Susan's Place Transgender Resources

Hello everyone.  This is Opaque and it is my first time posting to this group.  I am in my 6th day of HRT and would appreciate some honest, upfront communication.  Specifically, I have read several of the posts from other members on various transgendered topics, but I have not seen anything mentioned or related to DES which is commonly referred to as "Diethylstilbestrol".  This estrogen is a synthetic nonsteroidal estrogen that was first synthesized in 1938, and given to pregnant women to hypothetically reduce the risk of pregnancy complications and losses.  Well...my mother took DES when she was pregnant with me back in the 1960's.  I have read numerous articles that discuss DES sons and prenatal exposure to DES.  There is a high prevalence of individuals with confirmed or suspected prenatal DES exposure who self-identify as male-to-female transsexual or transgender, as well as some who have reported experiencing difficulties with gender dysphoria.  IS THERE ANYBODY OUT THERE THAT RELATES TO THIS???  Thanks.

Yes. I do.

You should also get screened for intersex conditions because DES can also do nasty things to your bodies abilities to make and respond to Testosterone properly so you may find that your responses to HRT are atypical. Specifically I know of at least one other case where it has induced an epigenetic modification on the genes controlling the aromatase metabolism. I have my strong suspicions that in me it was responsible for either inducing, or at very least making more complicated some physical abnormalities I have/had.

I was unwise enough to resist having blood tests for many years (back in the 80's they were less insistent about it) even when I was finally diagnosed with a form of PAIS but I relented this year and I was shocked to discover that taking a fairly normal postop dosage of estrogen was with me giving me blood levels in the stratosphere. I am now taking the MINIMUM possible dose and my levels are still high. The levels I had before reducing the dose were so high that my doctor says its a miracle that i am alive and haven't had a major stroke or thrombosis.

At the same time my T levels are literally zero.

So please make sure your medical team knows the facts and make sure they monitor you more carefully and thoroughly than normal.

Well Rejennyrated I will take what you say into careful consideration.  I do appreciate the quick response.  FYI, my doctor is aware of my exposure to DES and is working with me on that factor.  Have a great day!

Opaque

Hope you don't mind me butting in. I don't have any more information about DES.

But even if your present situation is down to DES, may I suggest, you are what you are, however you got that way.

As someone once said, you're the best person you know.

Hi Opaque!
Mom was taking it when she was pregnant with me. She had a stillborn 11 months before I was born and the doctor said that it was necessary to keep my alive. She was spotting super heavy when she first got pregnant with me. She's requesting medical records from the US military to find out (my father was in the military, I was born in 1969). Here's my approach though. To me, it really doesn't matter whether I was exposed or not. It doesn't change my life right now. I'm under a doctor's care, my life is going great. All of my blood levels were fairly normal before transition, I don't have abnormal genitals (that I was born with), and I'm sure I'm not IS or any of that stuff. I'm just me, DES or not :) My Mom is pretty insistent that she gets the records to find out for sure. She found the DES thing when I came out a few years ago and she was doing research. I have a book called "To Do No Harm" which is about DES exposure in the 50's - 70's, you might want to check it out. Just keep in mind that even if you were exposed, there is absolutely no conclusive link between exposure and anything gender-related. There is a lot of speculation but not much proof. Theoretically it makes sense that pumping a pregnant woman full of hormones in the initial stages of pregnancy would have some kind of affect, but scientists have not been able to approve it. So focus on your life; you told your doctor and they'll keep an eye on you (hopefully). Smile! Good luck in the journey, Meghan

Come to think of it , most children born in the early 1950's were commonly exposed to this chemical. I'll be 60 this year . I can't say for certain what effects this substance had on me . ellen

Keep in mind that DES was found in prenatal vitamins also, so even if your mom didn't take DES directly she may have taken prenatal vitamins with DES.

I fall into this category (my mom took some kind of prenatal vitamin when she was carrying me), so i don't know if I was exposed to DES or not. But this was in the early 60's, so it is possible.

It is interesting to hear some people say that there is no proof when there has in fact been a successful class action in the US which paid out large sums over this very issue. So while there may be voices of dissent, I think the balance of probability falls upon the fact that it did indeed cause some form of harm, however marginal or subtle, and indeed that those who marketed it during the 50's 60's and 70's probably know that this was the case even if they won't actually openly admit it.

Where I do agree is that you can't say for sure what effect it has had on your life, because you don't know what your life would have been like without it. I might well still have been PAIS intersexed, and even if I wasn't who is to say that my life would have been any better without being so. From where I sit my life looks pretty good all round, and that is one reason why I would never join one of these class actions or other forms of money grabbing. My own belief is that it probably acted as an amplifier, making any innate faults that one already had a disposition towards more likely to actually manifest.

Quote from: rejennyrated on September 20, 2010, 02:51:34 AM
Yes. I do.

You should also get screened for intersex conditions because DES can also do nasty things to your bodies abilities to make and respond to Testosterone properly so you may find that your responses to HRT are atypical. Specifically I know of at least one other case where it has induced an epigenetic modification on the genes controlling the aromatase metabolism. I have my strong suspicions that in me it was responsible for either inducing, or at very least making more complicated some physical abnormalities I have/had.

I was unwise enough to resist having blood tests for many years (back in the 80's they were less insistent about it) even when I was finally diagnosed with a form of PAIS but I relented this year and I was shocked to discover that taking a fairly normal postop dosage of estrogen was with me giving me blood levels in the stratosphere. I am now taking the MINIMUM possible dose and my levels are still high. The levels I had before reducing the dose were so high that my doctor says its a miracle that i am alive and haven't had a major stroke or thrombosis.

At the same time my T levels are literally zero.

So please make sure your medical team knows the facts and make sure they monitor you more carefully and thoroughly than normal.

Do you suppose those exceptionally high levels of E might explain why your boobs are so huge?

I'm a WWII baby, of course my mother took DES.  She also had an IS child one year before me that never left the hospital.  The birth certificate says female, the death certificate says male.

Quote from: pebbles on September 21, 2010, 04:14:24 PM
Do you suppose those exceptionally high levels of E might explain why your boobs are so huge?

Very likely yes - but I really wouldn't recommend anyone else to try it. Honestly its a genuine miracle I am alive.

I had something like ten times the normal levels of estrogen... That's certainly enough to give you a DVT. I only went to see the GP after my revision surgery, because my BP after the op went sky high! The surgeon had decided that as I was only on a low maintenance dose I didn't need to stop before the op. But when my BP ended up as 250/100 in the hours after surgery I thought - hang on this isn't right - I need to look into this... so without saying anything I went to the GP and finally relented (much to his surprise).

When the result came back he made me stop taking any and one month on to both our surprises I still had pretty well normal female levels which is rather odd. He wanted to investigate further and at this point he very nearly canceled my HRT completely but I have persuaded him to let me go back on the minimum dose because of my age. I am also of the opinion that this late in the day the why is now pretty irrelevant. I feel perfectly well so whatever it is hopefully it won't kill me.

What really scares me though is that pre-op (and because I had SRS after less than six months officially on HRT during the first couple of years post) I was put on the maximum normal dose which probably meant that in those early years I was running blood levels of maybe 20 times normal! That is like whoa! Scary frightening...

Still luckily I am still here, but I'm definitely going for breast screening when they offer me the appointment because after all those years on such high levels my risk of Breast cancer must be pretty frightening.

Quote from: rejennyrated on September 21, 2010, 04:47:03 PM
Very likely yes - but I really wouldn't recommend anyone else to try it. Honestly its a genuine miracle I am alive.

I had something like ten times the normal levels of estrogen... That's certainly enough to give you a DVT. I only went to see the GP after my revision surgery, because my BP after the op went sky high! The surgeon had decided that as I was only on a low maintenance dose I didn't need to stop before the op. But when my BP ended up as 250/100 in the hours after surgery I thought - hang on this isn't right - I need to look into this... so without saying anything I went to the GP and finally relented (much to his surprise).

When the result came back he made me stop taking any and one month on to both our surprises I still had pretty well normal female levels which is rather odd. He wanted to investigate further and at this point he very nearly canceled my HRT completely but I have persuaded him to let me go back on the minimum dose because of my age. I am also of the opinion that this late in the day the why is now pretty irrelevant. I feel perfectly well so whatever it is hopefully it won't kill me.

What really scares me though is that pre-op (and because I had SRS after less than six months officially on HRT during the first couple of years post) I was put on the maximum normal dose which probably meant that in those early years I was running blood levels of maybe 20 times normal! That is like whoa! Scary frightening...

Still luckily I am still here, but I'm definitely going for breast screening when they offer me the appointment because after all those years on such high levels my risk of Breast cancer must be pretty frightening.

I'd also imagine that's why your body responds so well to progesterone as progesterone inhibits on some level Estrogen uptake it also has a number of effects that counteract the negative effects of estrogen's... As in Progesterone's help balance the thrombotic factors produced with the liver and encourages the arterial endothelium to relax. Reducing the risk of blood clots. (P is the reason why women are less likely to have heart attacks until they are post menopausal)

But yeah given that's the case it's no wounder your body craves progesterone. Your body wanted balance.

I hope you don't mind me begin so bold as to suggest this and won't rip my head off... But I should point out that Body fat acts as a 'Sink' for estrogen as in Fat cells absorb estrogen then release it slowly, Umm I don't know for sure but based on your own testimony you are a 'large lady'... I'd suspect that your body is producing Some Endogenous Estrogens (either through hyperactive aromatisation hence why you have a T count of 0 or from the 'unidentified mass' behind your neovagina) And your body fat, is holding onto the extra estrogen from when your levels were massively abnormal and is now releasing it back into your system making it appear that your producing normal natal female levels of estrogen.

I'd suspect although I'm not a doctor The longer you keep your Estrogen level low the more the "E Sink" will gradually over time become depleted and you will regress somewhat to a level abit below what it ought to be. As your hormonal levels and thus optimum E dose are in an unpredictable state of flux it's shame they don't monitor you more.

I was born in the last years of the 50's.... and finally got my Ma to confess a few months back that all was not quite what we thought with her pregnancy...

I was an only child and post me she never conceived again but had multiple miscarriages...

(Being a devout catholic this was tough on her)

I'm with JennyR on this one.... there's strong proof of endocrine disruption with DES and even if we move into the wider (current) world, the seas are changing its chemistry.....which is affecting marine life sexual differentiation..

And male sperm counts in western lifestyle nations has been declining nicely for years

Quote from: pebbles on September 21, 2010, 07:30:28 PM
I'd also imagine that's why your body responds so well to progesterone as progesterone inhibits on some level Estrogen uptake it also has a number of effects that counteract the negative effects of estrogen's... As in Progesterone's help balance the thrombotic factors produced with the liver and encourages the arterial endothelium to relax. Reducing the risk of blood clots. (P is the reason why women are less likely to have heart attacks until they are post menopausal)

But yeah given that's the case it's no wounder your body craves progesterone. Your body wanted balance.

I hope you don't mind me begin so bold as to suggest this and won't rip my head off... But I should point out that Body fat acts as a 'Sink' for estrogen as in Fat cells absorb estrogen then release it slowly, Umm I don't know for sure but based on your own testimony you are a 'large lady'... I'd suspect that your body is producing Some Endogenous Estrogens (either through hyperactive aromatisation hence why you have a T count of 0 or from the 'unidentified mass' behind your neovagina) And your body fat, is holding onto the extra estrogen from when your levels were massively abnormal and is now releasing it back into your system making it appear that your producing normal natal female levels of estrogen.

I'd suspect although I'm not a doctor The longer you keep your Estrogen level low the more the "E Sink" will gradually over time become depleted and you will regress somewhat to a level abit below what it ought to be. As your hormonal levels and thus optimum E dose are in an unpredictable state of flux it's shame they don't monitor you more.

yes quite so - being a bit of a science freak (well I used to be a physicist) I have read up on it and that is pretty well exactly what we figured particularly the bit about hyper aromatisation. Docs are monitoring me very closely now! My arms are already like pincushions. So far 7 months on everything is holding remarkably stable at just about double normal levels. (which the doctor seems happy with)

Hi, Opaque!
I am a DES son. It just clicked for me this morning when i was reading about it on the DIYHormones yahoo forum. I was born in 1958 and my mother told me one time without any seemingly purpose that she took DES when she was pregnant with me. About two years ago I started crossdressing and feeling like this was what I wanted to do. I told my wife I didn't want to suppress it anymore. She's not too happy about it but we're still married. I am 54 at the present and taking dutasteride for BPH (Benign Prostatic Hypertrophy) and to make my hair grow (at least that's what I tell my doctors GP and Urologist). Really when I found out I had BPH and the doctor (uro) put me on finasteride, I continued on after he wanted me to and I told him I wanted to grow my hair. After that he advised Jalyn which is dutasteride and tamulosin (shrinks prostate). Sorry for going on and on but this is an ahah moment for me.
Kisses,
xxxx,
Jenny (Gorgonzola)

I was born in the early 1950's and have memories at age 13 of a doctor and my Mom discussing the whys of my much-smaller-than-usual penis.  It was bound to have been DES, as she admitted to me later on that she had taken drugs to prevent from miscarrying me (she had huge difficulties in getting pregnant with me and had also suffered an earlier miscarriage). 

When searching for reasons for my TG/TS feelings, DES showed up as a possible reason.  A few years later, I was able to pretty much nail down the DES theory through two facts:

1) Before beginning HRT, I had bloodwork that showed a testosterone level "in the cellar" and an estrogen level that was twice normal for a male my age.

2) After a bout of severe depression, my doctor was unable to get my symptoms under control until I was able to take a small dose of estrogen.  Apparently, my endrocrine system looks for estrogen to manufacture all of its various "products" instead of testosterone.  Until my testosterone levels dropped during "male menopause", it was theorized that my body simply converted T to E, then used it.  Then when I ran low on T, I got into BIG trouble.

I had a very quick and STRONG reaction to HRT.  I had breast pain within two days and breast budding within a couple of weeks.  Apparently, my body thought I was a girl in more ways than just my brain. 

I don't know if my birth Mother took it or not.  But I was born during the time when many women were on it.  Maybe it is why I am as I am.

Who knows.

I have had a very similar experience.  I was a DES son born in 1949.

I was a bit of a girly boy, but eventually got through a sort of male puberty.

My wife of 30 years was just shown a picture of me at age 18 and she said I looked like I was 11.

In my early 50's I began to exhibit the characteristics of "Low T".

My Testosterone was 150 on a male scale of 300-1100 and my E2 (Estradiol) was 80 on a 0-50 scale. In other words my T levels were about halfway between the low end of the male scale and the high end of the female scale.

Conversely, my E2 Levels were about halfway between the high end of the male range and the low end of the female range.

Taking testosterone injections raised my estrogen levels high enough to give me budding boobs in 6 months and a considerable "rack" within two years.

I gradually tapered off on the testosterone and began HRT with Estradiol Valerate injections.

I feel a lot better since I gave up my futile efforts to be male.  I retired six months ago, and am concentrating on a healthy diet and exercise.  I've lost a lot of upper body strength but I hear that's typical when you go from male to female.

I've come to realize that I was never really male at all... just trying to live up to other people's expectations.

Randi

Quote from: Carol on October 08, 2012, 04:38:20 PM
1) Before beginning HRT, I had bloodwork that showed a testosterone level "in the cellar" and an estrogen level that was twice normal for a male my age.
......
I had a very quick and STRONG reaction to HRT.  I had breast pain within two days and breast budding within a couple of weeks.  Apparently, my body thought I was a girl in more ways than just my brain.

My mother took "something" to make her feel better as prescribed by her doctor. She thinks that they were uppers. I know that's not DES, but it is an oddity.

  As more evidence arrives, It looks like I may be a DES son.  My mom had a daughter out of wedlock before having me and she gave her up for adoption.  She and my grandmother tried to get her back.  My mom also had anemia episodes before that, she tried to give blood for the WWII effort.  Two reasons for the doc to give her DES to prevent any miscarriages. 

  Joelene

I'm a son of DES... My mother was given it because I was a R factor baby. I was born a few weeks premature and I was in the hospital for several weeks after birth because of anemia. I almost died several times during that time and had multiple blood transfusions. I'm not sure about IS though. I do often wonder though. I never really developed my secondary sex characteristics and as far as T goes. It was impossible for my brain to process it. It made me so crazy most of the time. My parents would often get concerned about my behavior when I was growing up and throughout my young adult life. How I would just kinda short circuit and go all banana's.  Get all upset over nothing.
I have had wonderful results from Estrogen and Progesterone I can't complain no real big issues as of yet. It would be interesting to find out, but I wound't be surprised to find out that I am. I have defiantly been a lot more calm and friendlier to be around. I should have started HRT years ago.

I think I'm fourth generation. My great grandmother likely was given DES. My grandmother, from what I know, pry suffered from a lot due to DES. My dad, as a third generation son, clearly is suffering from gender issues that may or may not be related to DES. I would be fourth generation. Of course, this is all hypothetical on my part. I have no clear evidence that this is the case, nor do I care to do the research into it.

I am who I am.

Oh WoW,

No factual evidence, My Mum had a series of miscarriages before she had me. I was born in 1953 and she had been under medical treatment to enable pregnancy. I identified mentally as female from the day I identified as anything. I was the middle of three children, the other two were also female.

I haven't said this before but when I went on HRT I was taken off after 2 months as I produced more E2 than I was being given.  I won't go any further as it is private. But I was asked by my Endo if my Mum had been on hormonal treatment during her pregnancy with me me and I told her that I had no idea. We had little womb conversation that I recall (sorry).


I have no clue to how to access those previous medical records, even if they exist.


An old thread but a goodie.

Cindy

Hi! I am a DES son. My mom told me that she took it a few years ago. I didn't know that much about it at the time and we didn't discuss it at all. I think I told her thanks for telling me that and that was it. She had told me in other conversations that she had a rh factor which I still don't know much about but I think DES was prescribed for that situation. I think at that time and to some extent today doctors are just shooting in the dark at certain problems.
That's about all I'm going to say since some of my co-workers hack into my stuff on the network for their boyish entertainment.
Suffice it to say I am typical of other DES sons except I didn't have that many problems (yet).
I like to think most of what I am is what I want me to be and I am happy with it.
Jenny (gorgonzola)

Opaque thank you for finding this. I just checked my records and I am a DES son with R factor!! It was hard to find because I was adopted at birth in 1965! I also found an article: The Presence of Gender Dysphori at TransAdvocate.org  I matched almost every single symptom. I am very excited with this discovery, thank you again. Take care baby!  :)

  Well I might as well join the club I am also a DES son born Mar 1950. I find it a blessing that I was even born and have now recognized who I really am and feel an inner peace that I have never known for 63 years.Wish me a safe journey I see the endo Nov 5 2013.   Pat

It's never too late Pat. Go for it! I started at 47. Feels good to be free, doesn't it?  :)

  Jessica,  YES YES YES !:)

I think so.  I was born in 1969.  My brother and I both had testicular abnormalities, and I had to have vestgial "girl parts" removed when I was 12.  I always believed him to be bisexual as well.  So far he seems content with being a cisguy.  I haven't bugged my mother about this because it would probably crush her and it's basically irrelevant at this point.

HRT hit me like gangbusters too.  People say pics taken last year "must be someone else".  My lost hair came back quickly and I got passable cleavage in 8 weeks as well as a bit of a bubble butt, where it was flat as a pancake before.  I went full time after only 6 or so weeks of a low dose HRT.  I don't get many doubletakes anymore, but I suppose being 6'2" and built like a linebacker does make some people wonder.

I think the problem with DES is that the poll that established the link between DES and transsexualism was a "self-reporting" poll so it is not viewed with the same weight as a clinical study.

Having said that, I was born in 1949 to an unwed mother under the care of a teaching hospital and it is very likely she was given DES - she was given a number of medications and could not remember specific drug names. I was born with a number of medical problems including heart, respiration, and abnormal genitalia and spent the first 6 months of my life in hospital before being assigned 'male' and being adopted. I identified as female from earliest childhood and grew up thinking I was transsexual. At puberty, I had some male development and some female. At 17 I had my hormone levels tested and they were abnormal (high estrogen, low testosterone). I had SRS and transitioned fully at age 24 and trundled merrily through life. I was almost 60 before doctors told me I had a uterus.

Was it a result of DES or was it just "a roll of the dice"? I don't know and never will.

The more I find out about DES the more I believe that I was exposed to it. Unfortunately the medical records from back then are long gone so there is no way to know for sure.

I was born in the early 60's. My mother had a very hard time carrying me to term and she had a hysterectomy soon after I was born. For that reason alone she would have been a prime candidate for DES. She doesn't remember taking any medications during her pregnancy but she did take pre-natal vitamins, and I know that DES was often mixed into those so I believe that's how I was exposed.

I had a difficult childhood and got bullied and verbally abused all throughout school. I was shy and withdrawn, couldn't fight, and had no interest in sports. I was physically a very small boy and I looked quite femme, with a small face, a narrow chin and long eyelashes. I remained a small 120lb male until I was about 27 years old and then I finally gained some weight. In my very early years I had a lot of friends that were girls, until we got old enough that the "ick" factor popped up and they stopped being my friends.

Life went on. I got married and my wife and I tried to start a family. We had no success with that so we went to a fertility specialist, and after the first unsuccessful attempt he sent me to see a doctor who diagnosed an issue with my testicles that is often associated with DES exposure. I was pretty much shooting blanks.

At 45 I began to suspect that I was transgender.

At 51 I accepted the fact that I'm a transsexual.

So, yeah.

Was I exposed, Yes.

I was born in 1944, it was common to be used then, there were other complications also.  My one year older sibling (who died) was a hermaphrodite (birth certificate female, death certificate male).

My father and Mother had tried to conceive for several years when she became pregnant with me.  I was born March 29 1962.  I have some hospital documentation from that time that I found after my Grandmother died.  Not much helpful other than to confirm the birth.  On May 29, a new or altered birth certificate was issued and I was discharged from the hospital.  My father was on active duty Air Force and was gone but my mother went to my grandparents house, placed me and baby stuff on their table and left.  I have never met her. 

I have a severe metabolic disorder where I have slow phase 2 metabolism for almost everything and significantly reduced metabolism of aromatics via phase I or phase 2.  I am intersexed and I will not say what type right now until the medical folks quit argueing.  They even argue about MRI results.

I am still working with medical doctors.  I am still bothered about my birth - my first act in life at least contributed to my mother checking herself into an asylum.  I am still troubled with the metabolic problems.  I am what I am.  I am transitioning. 

Timeless post topic.

I'm DES, and I'm stage 4 TS.  Whatever the science is, and there is a lot out there now, I follow the models reported on wikipedia.

It makes complete sense to me.

What is a stage 4 TS?
Anyways - I think I did not get exposed to DES but my mother took "Gravibinan" - injections of estradiol and progesterone during pregnancy. Same goal - to make sure the pregnancy continues as she had low estradiol values herself. I doubt that it did much to me but who knows. I also wonder if possibly the docs used something else that she forgot... ;)

Natural estogens do not act the same way DES does, DES is a chemical.

Stage 4 Ts is Benjamine Stage 4.  It means my dysphoria allows me to live somewhat in both worlds, both roles.  It is not as straightforward as being a "true transexual".  There are large portions of me that remain male, mostly psychologically, and there is an overwhelming need for my female body.  So I operate "stealth" - living in a way that looks normal to most on the outside, but get me into a safe, private place and you'll find a fully transitioned trans-woman.  Like right now.

They have trouble classifying me. My hormone letter says I have "many autogynephic tendencies" and am "not a true transexual" and if I cherry pick that diagnosis I fit some of it rather well.  But since the auto theory is flawed and biased, it falls apart.  My therapist said it was a way to get me the hormones I so desperately needed.  Whatever.  I know who I am and why now.

So its not a transition stage its a standards of care stage.

I believe DES transitioned me in the womb first trimester, causing me to have estrogen receptors where most males do not, including and especially in the brain, that it reprogrammed my entire central nervous system to female and that it made me physically and structurally female until the darned testosterone finally became active at a very late puberty.  If only they knew what we know now, I would have been gorgeous.

Social conditioning abusively forced me to male, and there are many other things like I race cars and stuff.  But reality is that I am surely not male, and I'm not female either.  I am pre op transwoman.

Stage 4 unfortunately means no legal SRS by Benjamin Standards.  I am ok with that I am beautiful regardless.

Benjamin is what is used to determine hormone and SRS eligibility by the gatekeepers.  My gatekeeper fortunately recognized that it was clearly necessary for me to be on hormones - maybe because I have been starving for them ever since DES transitioned me in the womb.

Its all controversial here but I'll bet anyone its true.

I don't know where you live but very few of us were ever told we are stage anything. SRS is possible without any such thing, legally.

Benjamin scale is meaningless and no longer used for anything.

Hmmmmm.

I need to really get that understanding.  I probably am rationalizing too much again.

I keep searching for the "whys" as opposed to the "now what do I dos"

I think they were justifying the hormones, which have been a blessing to me.  And they said I don't fit Benjamin very well anyway.

A means to an end I guess.

Thanks for posting that.

Quote from: anjaq on February 06, 2014, 05:49:37 PM
What is a stage 4 TS?
Anyways - I think I did not get exposed to DES but my mother took "Gravibinan" - injections of estradiol and progesterone during pregnancy. Same goal - to make sure the pregnancy continues as she had low estradiol values herself. I doubt that it did much to me but who knows. I also wonder if possibly the docs used something else that she forgot... ;)

Gravibinan is an injectible drug containing a mixture of hydroxyprogesterone caproate (a progestin), and estradiol valerate. The fact that you've ended up trans supports a theory I have: that progestins are equally as capable of causing MTF transsexuality as DES was.

I think DES caused high rates of transness among DES sons by blocking their testosterone production during the second and third trimester of fetal development, which is when the brain development responsible for gender identity later in life seems to take place. If this theory is right then progestins (which also block testosterone production) should be capable of producing gender dysphoria and MTF transsexuality too. This is important because, while DES is a thing of the past and hasn't been used during pregnancy for decades, progestins were never withdrawn and are still quite widely used even now.

Hydroxyprogesterone caproate and dydrogesterone seem to be the two main ones; there's also one called allylestrenol that is apparently quite popular in Asian countries. There could be others, these are just the ones I know about. They're sold under many different brand names and formulations, Gravibinan being just one.

When doctors talk about them, quite often they're referred to as "progesterone", when in actual fact they're progestins (synthetic hormones designed to activate the same hormone receptors that progesterone does). This seemingly minor detail is quite significant because progesterone itself (in the quantities that occur naturally in the human body), doesn't prevent a male fetus from producing testosterone. Progestins, in the dosages commonly used during medical treatment, very probably do. One property of progestins is that they're extremely effective at suppressing testosterone production in adult men (spironolactone and androcur are both progestins, as is MPA, the drug most commonly used to chemically castrate sex offenders in the US!).

Quote from: Randi on October 08, 2012, 05:34:15 PM
My Testosterone was 150 on a male scale of 300-1100 and my E2 (Estradiol) was 80 on a 0-50 scale. In other words my T levels were about halfway between the low end of the male scale and the high end of the female scale.

Conversely, my E2 Levels were about halfway between the high end of the male range and the low end of the female range.

Taking testosterone injections raised my estrogen levels high enough to give me budding boobs in 6 months and a considerable "rack" within two years.
Randi

Exactly!!!  Those E and T levels are very close to what mine were when I went to an endo because my breasts were budding (T=148, E=87).  I went to a 40C prior to even starting E. 

Jen

HughE - did you find anything to support your hypothesis? I find it interesting. I know that progestins are harmful in hormone therapy but did not read anything about them in pregnancy

Quote from: anjaq on February 08, 2014, 07:37:37 PM
HughE - did you find anything to support your hypothesis? I find it interesting. I know that progestins are harmful in hormone therapy but did not read anything about them in pregnancy

"Anjaq", I gave quite a lengthly reply in another discussion "What causes transsexualism", so rather than repeat what I've said there, here's the link:
https://www.susans.org/forums/index.php/topic,157142.msg1355203.html#msg1355203

Basically, it's a known fact that exposure to external testosterone can make a female fetus partially develop as male across a wide range of animal species. Depending on how far into the pregnancy the exposure starts and how long it continues, you can end up with masculinised genitals, abnormal hormone regulation and impared fertility later or life, or partial or complete masculinisation of the brain.

Obviously doctors don't go around giving pregnant women testosterone, but, as a treatment to prevent miscarriages, they can give them quite high doses of synthetic female hormones. The theory I've come up with is that these female hormone derivatives can block fetal testosterone production, and thus produce the reverse effect of what testosterone would do, i.e. causing partial female development in a male fetus.

So far I've tried to confirm this theory by looking at the effects experienced by "DES sons". As this thread (and the one I've linked to) show, there certainly appears to have been a problem there! It's not just Susan's either, on all the trans sites I've been frequenting, you soon find DES being mentioned. Going on what I've seen, DES seems to have produced more or less the exact mirror image effects on the DES sons of what testosterone did in the sheep experiments, including feminisation of the genitals, causing problems with hormone regulation and impaired fertility later in life, and female brain development. I don't think the problem is limited to DES though, I think any exposure to synthetic female hormones during the criticial period when fetal sexual development is taking place is likely to produce similar effects. This is why the fact that you were exposed to gravibinan and not DES is so important. It supports my theory that the problem isn't limited to DES, and that treatments in current use are likely to be causing transsexualism too.

Gravibinan appears to still be in production, and I know that generic hydroxyprogesterone caproate and branded versions of it (e.g. Makena) are widely used in cases of threatened abortion and in women who've had recurrent miscarriages.

Given the high suicide rate associated with transsexualism, I think it's important to let people know that there are medications in current use that are potentially causing it!

Born in 1969, son of an R factor pregnancy that was high risk.  I'm a DES son too. This explain a great deal about my gender dysphoria.

Born in 1970 and a DES Son. My mother didn't even know she was given it by her doctor as they were in her prescribed prenatal vitamins.

Quote from: HughE on February 10, 2014, 09:07:16 AM

Basically, it's a known fact that exposure to external testosterone can make a female fetus partially develop as male across a wide range of animal species. Depending on how far into the pregnancy the exposure starts and how long it continues, you can end up with masculinised genitals, abnormal hormone regulation and impared fertility later or life, or partial or complete masculinisation of the brain.

I believe the it's expose to external estrogen not testosterone is the result of DES.

There is a Wiki here (http://en.wikipedia.org/wiki/Diethylstilbestrol) about it. The first sentence states:

QuoteDiethylstilbestrol (DES, former BAN stilboestrol) is a synthetic nonsteroidal estrogen that was first synthesized in 1938.

There is an interesting page about it here (http://www.antijen.org/transadvocate/id28.html) that you may find interesting.

Quote from: Sydney_NYC on February 10, 2014, 11:59:06 PM
Born in 1970 and a DES Son. My mother didn't even know she was given it by her doctor as they were in her prescribed prenatal vitamins.

I believe the it's expose to external estrogen not testosterone is the result of DES.

There is a Wiki here (http://en.wikipedia.org/wiki/Diethylstilbestrol) about it. The first sentence states:

There is an interesting page about it here (http://www.antijen.org/transadvocate/id28.html) that you may find interesting.

Sorry, I probably didn't word that very well. What I was trying to say is that there's an abundance of research (most of it carried out in the 1970s), showing that exposing a female fetus to external testosterone can cause it to partially develop as male, and this is true across a wide range of animal species. If the exposure takes place early in the pregnancy you get physical abnormalities (masculinization of the genitals), somewhat later and you get effects that, from what I was reading, look to be quite similar to an endocrine disorder that some women experience called polycystic ovarian syndrome or PCOS (basically the brain is no longer capable of correctly generating the signals that control the maturation and release of eggs, so you get impaired fertility and cysts building up in the ovaries, made of ripened but unreleased eggs). Later still and and you get partial or complete masculinisation of courtship and mating behaviour.

What this shows is that external hormones can make a fetus partially develop as the opposite sex, and if that happens, the way it manifests itself later in life is through genital abnormalities, endocrine disorders and impaired fertility, and the kind of psychological effects you'd expect from having a brain that's developed as the opposite sex (and depending on when the exposure starts and finishes, you can end up with only some of those effects or all of them).

That's what happens in animals implanted with testosterone during pregnancy.

Although obviously nobody's planning on implanting pregnant humans with testosterone, there are large numbers of people alive today who were exposed to very high doses of artificial female hormones during the critical period when their sexually dimorphic development was taking place, when their mothers were given hormone treatment to prevent miscarriage. DES was just the earliest of these treatments, a whole bunch of newer ones (including Gravibinan) took the place of DES when it was phased out in the 1970s, and have remained in use ever since.

Synthetic female hormones (estrogens and progestins) are basically completely alien to the male body and masculinity, and they're all highly effective at suppressing testosterone production in adult men. My theory is simply that the do the same thing to a male fetus as they would do to an adult man, and suppress his testosterone production when his mother is given one of these treatments to prevent miscarriage.

Based on what I've seen over the last couple of years, DES certainly seems to have been interfering with testosterone production in those unfortunate enough to be exposed to it. The thing that really surprised me wasn't so much the high rates of gender dysphoria, it's the fact that probably a third or more of the ones I've spoken to or whose personal stories I've read have genital abnormalities of some kind, and they're often quite serious things that required multiple surgeries to repair them too. There's a great deal of shame and secrecy associated with intersex conditions so it's not surprising that those affected and their families tend not to talk about it, but it's difficult to see how whoever was tasked with assessing what had happened to the DES sons could have failed to notice!

Scott Kerlin's summary that you've very helpfully linked to, illustrates very well what I was trying to say. With DES, you seem to get the exact mirror image of what happens in lab experiments where a female fetus is masculinized through exposed to testosterone,i.e. feminization of the genitals, endocrine disorders related to underproduction of testosterone, impaired fertility, and the kind of psychological effects you'd expect to see if someone had a female brain. That supports my original theory, that these hormonal miscarriage treatments can produce the reverse of what a testosterone implant would do, and cause a male fetus to partially develop as female.

Someone sent me a DES-related personal message, but I don't appear to have permissions to use the messaging or email functions, so can't reply to it directly. However, for anyone who's DES-exposed or interested in finding out more about DES, there's a facebook page,

https://www.facebook.com/DESInfo

which is being run in their spare time by some DES daughters, and is quite trans friendly (the main DES charity, DES action USA, isn't so trans friendly unfortunately). It has a fair bit of information about DES and, in the Notes section, some personal stories of DES sons.

There's also a small group, "DES: Society of Sons and Daughters"

https://www.facebook.com/groups/155114284675795/

to which I belong, along with most of the DES sons and daughters I've met online. It's a closed group because some of us have been talking about quite personal things, and didn't want them popping up on all our friends news feeds (most transgender groups on fb are closed, for that same reason). I didn't set the group up, but I'm sure the owner wouldn't object to people from here joining.

There was also a DES sons group in Yahoo groups, but unfortunately it doesn't seem to be active any more.

This thread gives me peace and the DES thing makes total sense with my life experience.  I appreciate the posts.

  Hi HughE  I think at 15 posts you will be able to answer, your almost there. Also my e-mail address should be available then too.  Pat

I have no solid evidence I was exposed to DES.  I have my suspicions.  I was born the year it was used the most.  My mother was 31 and had her own medical issues making me the result of a high risk pregnancy, so I suspect.  My mother died forty years ago so there is no way to ask.  My dad died five years ago so there is no way to ask him either.  The only one left from my parent's generation left to talk to is my dad's little sister who he didn't discuss issues like this with.  She was able to confirm the high risk pregnancy conclusively.  So I have "symptoms" to look at:

I had gynecomastia from the onset of puberty
I have had an urge to cross dress from the same time
I have wished that I were born female
My libido is very near NIL
I react BADLY to Testosterone
I have finally figured out that thing in the back of my mind that was just "wrong" was/is GID

I don't know, but I suspect.  I guess all this uncertainty is what those who sold DES are banking on to avoid all liability for their actions.  It stinks...

For anyone who's interested, here's some more DES links.

"DES Voices: From Anger to Action", an e-book written by DES mother Pat Cody following the death of her daughter from a DES-related cancer, available as a free download here:
http://www.lulu.com/shop/pat-cody/des-voices-995/ebook/product-17522743.html
Chapter 3 is devoted to DES sons, although she's glossed over the link to gender dysphoria, and I don't think she realised that the genital abnormalities DES sons were often born with, are actually the result of intersexed development.

A now defunct website dealing primarily with intersex, but this section seemingly set up by people associated with Drs Kerlin and Beyer's DES sons research group:
http://web.archive.org/web/20070904130339/http://www.intersexualite.org/Definitions.html

A second (also now defunct) website, specifically looking at DES as a cause of transsexuality:
http://web.archive.org/web/20090402011805/http://www3.telus.net/des1/index.html

The personal story of Dana Beyer MD:
http://desdaughter.wordpress.com/2013/08/15/des-other-daughters-neglected-evidence-of-prenatal-gender-development/
If you follow the links at the bottom of that page, there's a fair bit of information on that website about DES sons, and about DES in general.

Biography of Laura Amato, the founder of Laura's Playground:
http://www.lauras-playground.com/bio.htm

A DES thread on Laura's Playground:
http://www.lauras-playground.com/forums/index.php?showtopic=20727

A DES thread on Chameleons West Australia:
http://www.chameleonswa.com/forum/viewtopic.php?f=3&t=534
There's an interesting comment there, about it being used in the UK during the 1950s as part of a secret project to increase the birth rate!

http://news.google.com/newspapers?id=BmJOAAAAIBAJ&sjid=U0sDAAAAIBAJ&pg=3742%2C5111526&hl=en
A page from the Ellensburg Daily Record, Nov 8, 1962, about a court case against Nysco laboratories, Inc., a pill manufacturer that didn't clean their equipment properly after producing a batch of DES tablets. Their next production run was of childrens medicines, which became contaminated with DES. Apparently, thousands of boys and girls across America started developing breasts shortly afterwards as a result.
"The FDA said it can cause feminization in young boys". They knew this in 1962, but didn't withdraw approval for DES for a further decade  (and have never acknowledged the link with intersex conditions and transsexuality in DES sons).

http://prenatalexposures.blogspot.co.uk/
A blog put together by Jill Escher, the mother of two autistic children, who is trying to highlight the link between synthetic hormones and autism. Although in her case the exposure was to progestins rather than DES, there's plenty of information on her blog about the wanton way in which extremely high doses of newly developed synthetic hormones (including DES), were administered to millions of unsuspecting women in the course of treatment aimed at preventing miscarriages. It's a reminder that DES isn't the only offender here, and that the harmful effects of these substances likely go far beyond transsexuality in DES sons and the acknowledged problems in DES mothers and daughters.

An article I wrote about this time last year, published on CNN iReport:
http://ireport.cnn.com/docs/DOC-938285

An article I had published last September about the link between prenatal exposure to synthetic hormones and transsexuality:
http://www.hormonesmatter.com/hormone-treatment-pregnancy-gender-variance/

This is going to help a lot of folks when they hit this site

Thanks HughE.

I am utterly convinced DES is why I am hardwired female.  And it helps to know  that.  It actually helped save my marrage to have a physical cause.

I've just had a letter to the editor published in the current issue (issue 139, Winter 2014) of DES Action USA's Voice magazine. Although the magazine itself is only available to members, here's a copy and paste of the letter:

Letter to the Editor
Prenatal Hormone Exposure and Gender

I was born in New Zealand and I'm currently based in London UK. For as long as I can remember I've had a kind of partially feminine gender identity, but until recently never consciously acknowledged it. Then, a couple of years ago I realised that my body language, my pattern of arousal and orgasm, and my instinctive social behaviour are all very much more like what you'd typically see in a woman rather than a man - and that I have a body that's a bit like a cross between a man's and a woman's too!

Through research I've learned this is known as a "eunuchoid habitus", and is something seen in intersex cases. I have a feminine appearance with long, slender arms and legs and a female leg to trunk ratio, described as long legs with a comparatively short upper body. Overall I look quite different from the males in my family and a lot more like my mother and sisters.

In short, I'm not just psychologically intersexed because something unusual seems to have happened to my physical development too. But what?

The sex-determining chromosome, the Y chromosome, tells our undifferentiated gonads to turn into testicles (without it they'll turn into ovaries instead). All the genetic blueprints for actually building a male or female body are located elsewhere in your genome though, so everyone has the full set of instructions for both sexes.

Ordinarily this system works quite well and you'll develop as one sex throughout the pregnancy  But as I now understand it, certain conditions can cause a male foetus to underproduce (or a female foetus to overproduce) testosterone causing the developing body to follow a mixture of male and female instructions.

With most intersex conditions, the abnormal hormone situation tends to be there throughout the pregnancy. In my case, there seem to have been normal male levels of testosterone to start with and towards the end of the pregnancy too, but a limited period of very low testosterone in the middle. It didn't seem to match any conventional intersex scenario that I could find.

Then I read a passage in Brain Sex: The Real Difference Between Men and Women, by Anne Moir and David Jessel describing a pattern of behaviour commonly shown by teenage boys who were prenatally exposed to the artificial estrogen DES. The boys were described as typically shy, socially withdrawn, lacked self esteem, were regarded as sissies, bullied, ostracised by their peers, had no ability to fight back when attacked and no interest in sport. The authors depicted it as " feminized behaviour" and it matched my teenage years so closely it could have come straight out of my school report! That got me looking at a chemical exposure of some kind as the explanation for what had happened to me.

DES, and artificial female hormones in general are good at suppressing testosterone production in adult men. Why wouldn't they have the same effect on a male foetus? The dose of DES required to completely stop testosterone production in prostate cancer patients is 3mg per day; the starting dose for miscarriage prevention was 5mg per day.

DES Sons have the emotionally comforting knowledge that what happened to them was done to prevent miscarriage because their mothers desperately wanted and loved them. But that's not my circumstance. There was no medical reason for my mother to have been given DES and in fact, I suspect she most likely took an overdose of contraceptive pills in a failed attempt to end the pregnancy. As I see it, that could have severely disrupted my developing endocrine system so for a few weeks testoterone levels were limited. It's not something I'm going to be able to prove but for a variety of reasons I'm fairly sure that's what happened.

Since coming to that realization I've been trying to learn as much as possible about prental hormonal disruption and I feel a kindred spirit with the DES Sons I've connected with. Many seem to share similarities with me, including genital abnormalities, feminized behavior as teenagers, endocrine issues and gender variance. Several have also mentioned having a feminine appearance, leading me to speculate that both brain development and physical appearance may be linked to prenatal hormonal exposures of varying kinds.

One thing I've noticed, though, is that many of the gender variant DES Sons I've come in contact with seem to be more psychologicaly female than I am, and more fully identify as women than I do. Could DES use have resulted in more male to female transexuality than would have otherwise occurred in the population?  I certainly wonder.This also brings forward the importance of dose and timing in prenatal exposures. While, by my calculations, I had a brief exposure to a high level of synthetic hormones, DES Sons were exposed throughout much of their development in the womb.

With the growing understanding of damage caused by DES and the fact that it started serious investigation of endocrine disruption issues,  I'm writing in thanks that DES sparked this interest even though sadly, it did so much harm.  But where would we be today if the DES link to health issues had never been made?

I thank researchers for uncovering truths we already know and hope they continue their studies not only into DES but also into other hormones that could be having similar effects. My situation raised questions for me and I believe the answer is in what happened before I was born. While not a DES Son I feel a kindred spirit with gender variance.

I worry now that drugs still currently in use could continue wreaking havoc in the name of doing good. Pregnant women please be careful with the exposures allowed for your unborn children. We don't know all there is to know about their safety, especially those that could create hormonal imbalances before birth.

Sincerely,

Hugh Easton

"The boys were described as typically shy, socially withdrawn, lacked self esteem, were regarded as sissies, bullied, ostracised by their peers, had no ability to fight back when attacked and no interest in sport. The authors depicted it as " feminized behaviour"

That describes me perfectly growing up. I was born in the late 60's. I don't know if there is anything to it but it does seem to be too much of a coincidence. I do know my mom had a daughter before me that she gave up for adoption and a miscarriage before me. She also had another miscarriage after me when I was around 4 or 5 so all of her pregnancies seemed to be high risk. Unfortunately she died and I have no way of finding out. It would explain a lot.

I just thought I'd remind people about this terrible drug DES, which, up until about 1980, was widely used as a treatment to prevent miscarriages and premature births. An estimated 5 million mothers and a roughly equal number of unborn babies were exposed to DES, making it by far the largest drug related disaster in the history of medicine. Even so, not many people today have even heard of it (which illustrates how much power the pharmaceutical companies have when it comes to covering up their mistakes!).

DES is quite important as far as transsexuality is concerned, because it's one instance where medical hormones have quite clearly caused a large number of cases of transsexuality. Although DES itself was withdrawn from use 40 years ago, I think it's highly likely that other drugs still in use can similarly interfere with normal male development, with MTF transsexuality being one of the possible side effects.

Here's a list of symptoms that commonly seem to be associated with DES exposure:

Born between 1940 and 1971 (US) or 1980 (elsewhere)
Undescended testicles
Micropenis - a fully formed but considerably shorter than normal penis
Hypospadias
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development)
Vestigial female organs or organ remnants
Intersexed genitals similar to grade 3 PAIS
Other genital abnormalities

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle

Very shy, socially passive behaviour as a teenager
Difficulty forming friendships with boys; having a special affinity with girls
Being bullied a lot; having an inability to fight back
Having no interest in sport
People tending to assume you're gay; lots of men being attracted to you
Identifying as a woman, or part of you identifying as a woman while part identifies as a man

Depression
ADHD
Other seemingly non gender related psychological problems

Quote from: HughE on September 05, 2014, 05:49:34 AM
I just thought I'd remind people about this terrible drug DES ...

At some point in the 1970s my mother received an official notification from the hospital where I and my 2 sisters were born informing her that she had been prescribed DES during all three of her pregnancies.  The letter went on to recommend that she "notify any of her living children of this and encourage them to advise their physicians".  In her typical dysfunctional manner, my mother made copies of the notification letter and mailed one to each of us, with no further note or comment from her. 

I was already well down the path of transition long before this revelation and when we all received the letters from my mother, my oldest sister (who vehemently disapproved of my journey) made a point of pronouncing that our exposure to DES "had nothing to do with this (my being TS)".  That may or may not be the case - either way it really doesn't matter to me now.  My prenatal exposure to DES as well as SRS and all the other steps I took as a young adult in order to make a life that worked for me are all ancient history now.

Carol

  Thanks for the update Hugh you always have some great information for us. I just wonder how many of us had cysts on the left testicle My largest was 5.2 cm with smaller ones present.Also I have had pain down there since the early 70's.Spiro finally dulled the ache after I started HRT in Dec of 2013 its still there but not nearly as bad.A permanent solution is in the works for next year.  Patty

Quote from: HughE on September 05, 2014, 05:49:34 AM
I just thought I'd remind people about this terrible drug DES, which, up until about 1980, was widely used as a treatment to prevent miscarriages and premature births. An estimated 5 million mothers and a roughly equal number of unborn babies were exposed to DES, making it by far the largest drug related disaster in the history of medicine. Even so, not many people today have even heard of it (which illustrates how much power the pharmaceutical companies have when it comes to covering up their mistakes!).

DES is quite important as far as transsexuality is concerned, because it's one instance where medical hormones have quite clearly caused a large number of cases of transsexuality. Although DES itself was withdrawn from use 40 years ago, I think it's highly likely that other drugs still in use can similarly interfere with normal male development, with MTF transsexuality being one of the possible side effects.

Here's a list of symptoms that commonly seem to be associated with DES exposure:

Born between 1940 and 1971 (US) or 1980 (elsewhere)
Undescended testicles
Micropenis - a fully formed but considerably shorter than normal penis
Hypospadias
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development)
Vestigial female organs or organ remnants
Intersexed genitals similar to grade 3 PAIS
Other genital abnormalities

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle

Very shy, socially passive behaviour as a teenager
Difficulty forming friendships with boys; having a special affinity with girls
Being bullied a lot; having an inability to fight back
Having no interest in sport
People tending to assume you're gay; lots of men being attracted to you
Identifying as a woman, or part of you identifying as a woman while part identifies as a man

Depression
ADHD
Other seemingly non gender related psychological problems

As with your other list, almost all of this describes me perfectly with only few exceptions. However, my biological Mom has passed a long time ago, when I was six and she was all I had biologically. So I assume there's no way to find out if she was exposed to DES. I can ad this tho, I was born intersexed at only 8 months. I was a premie but that's all I know. I was born on Halloween 1964 tho, so it is possible my Mom was treated with DES. I just have no way of finding out.

Thanks for posting this info and for this thread. It has answered many of my questions I've had for many years.

Ally :icon_flower:

In the US, from 1958 to 1963, it was also prescribed as a fertility aid.  I am one of those....

It's worse than I can ever explain.  It just makes me cry.

Carrie... you may explain for me.  They need to know and you know everything.  You see me every day, you know the truth about what I am and how this has impacted me.

Hugs to all,

Jen

@Jen,

You think on my Reservation it might have still been in use in 1964?
Thanks in advance.
Ally :icon_flower:

Here's a list of symptoms that commonly seem to be associated with DES exposure:

Born between 1940 and 1971 (US) or 1980 (elsewhere) - YES
Undescended testicles - No, but my brother had one.
Micropenis - a fully formed but considerably shorter than normal penis - No, it was just unremarkable
Hypospadias - No
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Yes
Vestigial female organs or organ remnants - Yes
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Yes

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Yes, but I learned to fight back eventually.
Having no interest in sport - No, I like sports, but I just royally sucked at playing pretty much all of them.
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes, I even thought I was nonbinary for a time.  I don't ID as male at all anymore.  It was just part of an act that kept me from getting bullied.
Depression- Yes, but I'm not since transitioning.
ADHD - SQUIRREL! (No, not you, Laura...)
Other seemingly non gender related psychological problems - Yes, severe anxiety before HRT, as well as drug and alcohol abuse.

I can Identify with a lot of this^^^____^^^. Not all mind you but much of the above I can say yes to.

Ally :icon_flower:

Which countries outside of the US was this taken and when?

Quote from: Allyda on September 06, 2014, 04:45:08 PM
@Jen,

You think on my Reservation it might have still been in use in 1964?
Thanks in advance.
Ally :icon_flower:

American Indian res in 1964?  That was back in the day when the government experimented on people.   Possible. ..

I'll pm off - line

Hugs

Jen

Quote from: ImagineKate on September 07, 2014, 09:03:03 AM
Which countries outside of the US was this taken and when?

As far as I know, DES was used in pretty much any country that had Western medicine. It lost it's FDA approval in 1971, although some doctors in the US continued to prescribe it "off label" for several years after that. Outside the US, it continued to be used throughout the 1970s, and in parts of Europe even until the early 1980s apparently. If you were born after 1980, you probably weren't exposed to DES. However, DES was just the first of a whole range of artificial female hormones to have been used on pregnant women, and I think that if one of these drugs can cause transsexuality, then it's highly likely that others can too.

I would think that pretty much anything that disrupts a woman's endocrine system during pregnancy could cause this.  There were plenty of transfolk before and after DES.

I am curious as to how much DES raised the frequency of transpeople in the population.

Well, though I really would like to know either way, I guess whether I was exposed or not now is irrelevant cause my Mom has passed and there's prolly no way for me to find out. Native American society is a bit different in that we aren't the greatest record keepers. We have a strong oral tradition that is still widely in practice today. Prolly, the only way I could possibly find out if it was in fact in use on my Rez in 1964 is to actually go to my Rez myself, and ask members who are old enough to have worked in our medical facility in 1964, which in itself wasn't much back then anyways. Something I may just do after I get moved back out there after my SRS. If I could in someway find out if it DES was in use on my Rez back in 1964 it would make looking into it worthwhile to satisfy my curiosity.

Many thanks to Hugh and everyone who has posted.

Ally :icon_flower:

DES forms a very stable complex with estrogen target proteins.   I modeled the shape and binding and it probably is even better than estrogen.  I've never seen anything like this.  I am going to throw DES into a  much higher level model in the morning....  Interesting. 

If DES can cause it, than other can cause it.  That's possible but it would depend on the concentration (dose) and the binding constant with the target proteins.  (Why I'm looking at this suff...)

This stuff should never have been used.

Hugs,

Jen

Quote from: JLT1 on September 07, 2014, 09:06:55 PM
DES forms a very stable complex with estrogen target proteins.   I modeled the shape and binding and it probably is even better than estrogen.  I've never seen anything like this.  I am going to throw DES into a  much higher level model in the morning....  Interesting. 

If DES can cause it, than other can cause it.  That's possible but it would depend on the concentration (dose) and the binding constant with the target proteins.  (Why I'm looking at this suff...)

This stuff should never have been used.

Hugs,

Jen

Thanks hun for your research. It is greatly appreciated.

Ally :icon_flower:

Quote from: Allyda on September 07, 2014, 07:52:14 PM
Well, though I really would like to know either way, I guess whether I was exposed or not now is irrelevant cause my Mom has passed and there's prolly no way for me to find out. Native American society is a bit different in that we aren't the greatest record keepers. We have a strong oral tradition that is still widely in practice today. Prolly, the only way I could possibly find out if it was in fact in use on my Rez in 1964 is to actually go to my Rez myself, and ask members who are old enough to have worked in our medical facility in 1964, which in itself wasn't much back then anyways. Something I may just do after I get moved back out there after my SRS. If I could in someway find out if it DES was in use on my Rez back in 1964 it would make looking into it worthwhile to satisfy my curiosity.

It's highly likely that DES was used on your Reservation, because it's very cheap to manufacture. If the govt were going to supply your people with any medicines at all, that would have been one of them. The two decades when it was most heavily used were the 1950s and 60s, so you were born during the time when it was most likely to have been used too. If your mother had a history of miscarriages, was aged over 40 while pregnant with you, or there problems during the pregnancy, then there's a good chance she was given it.

Your chances of there still being medical records after all this time are slim, and seeing as your Mom has passed away, probably your only way of knowing for sure is if you have a sister or perhaps an aunt who knows. Female family members are much more likely to know, because after the link to cancer was discovered, quite a few doctors did tell their patients that they'd been the drug, and that their daughters might be at risk of cancer and should have regular cancer screening.

Quote from: HughE on September 08, 2014, 04:48:44 PM
It's highly likely that DES was used on your Reservation, because it's very cheap to manufacture. If the govt were going to supply your people with any medicines at all, that would have been one of them. The two decades when it was most heavily used were the 1950s and 60s, so you were born during the time when it was most likely to have been used too. If your mother had a history of miscarriages, was aged over 40 while pregnant with you, or there problems during the pregnancy, then there's a good chance she was given it.

Your chances of there still being medical records after all this time are slim, and seeing as your Mom has passed away, probably your only way of knowing for sure is if you have a sister or perhaps an aunt who knows. Female family members are much more likely to know, because after the link to cancer was discovered, quite a few doctors did tell their patients that they'd been the drug, and that their daughters might be at risk of cancer and should have regular cancer screening.

Thanks Hugh I really appreciate it. My mom was only 14 when she had me, and I do know from the times I was a bad kid, that she had trouble with her pregnancy. What that trouble was mind you is a mystery for when she got mad at me for being bad, naturally she didn't go into specifics. Native American medical care back then was in fact supplied by the Government and done on the cheap. Since the casino's were built though in the early 90's things got a lot better out on my Rez, for all those who wanted to have those benefits. There are some elders tho who still cling to the old ways and live in the bush. But they are few these days. Anyhoo, thanks for the info. I'll just have to live with the knowledge that it is possible DES had a hand in causing my intersex and trans conditions.

Ally :icon_flower:

The key point I've been trying to make is that there is a very strong correlation between DES and MTF transsexualism, both here and in every other place I've looked too. Not only that, but among the "DES babes" I've chatted to or friended on facebook, probably close on half were born with genital abnormalities of some kind (often quite serious things like strangulated hernias or an obstructed urethra, that required surgery immediately after birth). Probably half or more have female body markers and signs of hormonal problems too. I have mainly been meeting these people on trans support sites so there is likely to be an element of selection bias there, but even so, it's pretty obvious that there was a massive problem with that drug, and that there's been a cover up of some kind. If it's happened in the past with one of these drugs, then who's to say it isn't still going on with others?

The way I see it, there's definitely been a cover up of some kind. If you look at the CDC website on DES sons:
http://www.cdc.gov/des/consumers/about/effects_sons.html

there's a whole bunch of claims on there that don't stack up.

It says "DES sons are not at increased risk for infertility". This claim is based on a study, Wilcox 1995. However if you look at what they did in that study, they didn't do anything to actually measure fertility. All they did was ask the participants questions about the number of children, their age when the first child was born etc. Men produce so many sperm cells that, even with a lowered sperm count, they'll still be able to get a woman pregnant. All you're really measuring by counting the number of children is how keen someone was to have children. In my own case, I eventually experienced problems with sexual function and ejaculate volume, but it didn't happen until I was in my 40s. I fathered both my children when I was in my early 30s, so even though my testicular function eventually went pear shaped, it didn't have any effect on the number of children I had. Probably the same is true for most other people in a similar situation too.

I've found 3 studies in which they did measure fertility in DES sons, and found plenty of problems:

http://www.ncbi.nlm.nih.gov/pubmed/772199
J Reprod Med. 1976 Apr;16(4):147-53. "Structural and functional abnormalities in the sex organs of male offspring of mothers treated with diethylstilbestrol (DES)."

http://www.ncbi.nlm.nih.gov/pubmed/850321
J Urol. 1977 Apr;117(4):477-80. "Pathological semen and anatomical abnormalities of the genital tract in human male subjects exposed to diethylstilbestrol in utero."

http://www.ncbi.nlm.nih.gov/pubmed/37351
J Urol. 1979 Jul;122(1):36-9. "Association of diethylstilbestrol exposure in utero with cryptorchidism, testicular hypoplasia and semen abnormalities."

In those studies, nearly a third of their DES sons had severely abnormal semen, and there were similarly high rates of genital abnormalities too. So I think the CDC is fronting a massive whitewash there.

Another thing I've discovered is that the single largest cohort, or study group, of DES sons, the Mayo group, aren't typical DES sons at all. Their average exposure, 720mg over the course of the pregnancy, is around 15 times smaller than was the case for DES sons exposed to the standard "Smith and Smith" protocol for prevention of miscarriage (which is the vast majority of DES sons worldwide). Very few of the Mayo group had exposures starting earlier than 12 weeks after conception either, whereas in other studies, all the most severe genital abnormalities were associated with exposures starting earlier than 12 weeks. In other words, they've collected a bunch of people with a very small exposure to DES and who were exposed too late in the pregnancy to develop serious abnormalities from it, and made them their single largest study group of DES sons. Small wonder that they didn't find any clear evidence of abnormalities.

Here's one of the two studies they mention in which no clear evidence of genital abnormalities was found:
http://www.ncbi.nlm.nih.gov/pubmed/6357269

It was a study of the effectiveness of DES in treating toxaemia of late pregnancy, and it even says in the abstract:

"Those in the stilboestrol group started treatment at the 12th week of pregnancy on average..."

which would explain why there wasn't clear evidence of genital abnormalities, since for the majority of the participants, exposure would have started too late in the pregnancy to cause genital abnormalities.

Under the "Smith and Smith" protocol, treatment was typically started at 7 weeks or as soon as the pregnancy was confirmed, hence this study doesn't really tell us anything about the incidence of genital abnormalities in typical DES sons.

In the other study in which no clear evidence of genital abnormalities was found, Leary 1984:
http://jama.jamanetwork.com/article.aspx?articleid=395455

there isn't anything in the abstract to say when on average exposure started for the DES sons in the study, or what doses they were typically exposed to. However, since there's over 800 DES sons in the study, my guess is that it was drawing mainly from the Mayo cohort, in which case it's not surprising that there was no clear evidence of abnormalities.

There's another study mentioned on the CDC website,
http://www.cdc.gov/des/consumers/research/recent_psychosexual.html

"Psychosexual Characteristics of Men and Women Exposed Prenatally to Diethylstilbestrol" (Titus-Ernstoff et al., 2003)
In that study, they appear to have focused entirely on sexual orientation, and scrupulously avoided asking any questions about gender identity. Whether that was accidental or deliberate I don't know, but it's certainly helped to conceal what is by far the most important consequence for most natal males of being exposed to DES!

Quote from: HughE on September 07, 2014, 07:02:25 PM
As far as I know, DES was used in pretty much any country that had Western medicine. It lost it's FDA approval in 1971, although some doctors in the US continued to prescribe it "off label" for several years after that. Outside the US, it continued to be used throughout the 1970s, and in parts of Europe even until the early 1980s apparently. If you were born after 1980, you probably weren't exposed to DES. However, DES was just the first of a whole range of artificial female hormones to have been used on pregnant women, and I think that if one of these drugs can cause transsexuality, then it's highly likely that others can too.

Thanks. I was born in 78, so there is a possibility.

Born between 1940 and 1971 (US) or 1980 (elsewhere) - YES
Undescended testicles - No, .
Micropenis - a fully formed but considerably shorter than normal penis - So, how do I find this out LOL
Hypospadias - No idea
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Yes
Vestigial female organs or organ remnants - no
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones  big time.  That face there has no ffs
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - gyno only

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Yes, but I learned to fight back eventually.
Having no interest in sport - No, I like sports, but I just royally sucked at playing pretty much all of them.
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes, I am nonbinary
Depression- Yes, .
ADHD - Is that why I keep hitting the forum at work?  Undiagnosed. and likely.)
Other seemingly non gender related psychological problems - Yes, severe anxiety before HRT, as well as drug and alcohol abuse.
[/quote]

are you kidding me

Are you KIDDING me????????

There were more questions than I was aware of.

Ally you look great dear.

We have the smoking gun, and we live....and love.... and learn.

Nails out hair down heart wide open and living as best as I can, in many genders.

---Satinjoy

OK another thought. If DES had an effect of a lot of boys wanting to be girls in a patriarchal society and world. MTFs outnumber FTMs by how much and in a patriarchal society wouldn't most people crave and want to be male in a society where males have the advantage? I mean, really. What is the ratio, I think it was mentioned on this sight before. I mean seriously if it was a choice or just a psychological condition, why would anyone long so much to be female in a male ruled and dominated world when being male meant having all the advantages? Believe me, I have asked myself this question for a long time and my answer doesn't even make sense to me and that is I am hardwired female with female emotions and thinking. The big question is why? I mean I can understand why FTM strive for masculinity in a patriarchal world, God Bless them, but why would anyone want to be female in a male dominated world? It just doesn't make sense to me and really don't make sense why MTFs outnumber FTMs in such a wide margin. If it was 50/50 it would make much more sense.

So if DES could have that kind of affect, what about DNA and genetics. Could it make another whole generation susceptible to being transgendered either way, MTF or FTM?

Satinjoy- ARE YOU KIDDING ME!!!  That's freaking scary.

I knew but the scope is larger than I thought.  What I worry about is where it will be in a decade.  In me that is.  What else it did.

That is scary indeed. Sj

Quote from: Satinjoy on September 10, 2014, 04:52:27 PM

We have the smoking gun, and we live....and love.... and learn.

---Satinjoy

Dear Satinjoy. If we really had a "smoking gun" other than those of us that know and feel what DES has done to us. Well, we would already be rich. But maybe not either. I see advertisements for law firms all the time about class action lawsuits about this drug or that drug. Where I am it's about T for men, not FTM but men and the strokes and heart troubles it is causing now. Risperdal for ADHD too and about how it causes gynecomastia. Wow where do I find Risperdal on the street? I would rally love my little As to be more natural Bs. 8)

I think Hugh has it right about big Pharmaceutical companies. Your looking at whole generations, at least 2 that they would have to compensate more or less. That won't fly with big corporations. Sweep it under the rug and pay the lawyers and you'll never hear another word about it. Sorry to say it but that is the way it goes. Both to SJ and Jill. Big money can cover anything up and we are the ones that bear their cross. Maybe like the Tuskegee airmen, after the last of us is gone, big Pharma may have a comscience. But not right now while we still are here. :( Just a sad fact. The smoking gun is usually pointed at your own head unless it is something someone can bandstand against. Yeah it is sad and I may be a Debbie Downer, but too many time it has happened. :(

Quote from: Jess42 on September 10, 2014, 09:24:03 PM
Dear Satinjoy. If we really had a "smoking gun" other than those of us that know and feel what DES has done to us. Well, we would already be rich. But maybe not either. I see advertisements for law firms all the time about class action lawsuits about this drug or that drug. Where I am it's about T for men, not FTM but men and the strokes and heart troubles it is causing now. Risperdal for ADHD too and about how it causes gynecomastia. Wow where do I find Risperdal on the street? I would rally love my little As to be more natural Bs. 8)

I think Hugh has it right about big Pharmaceutical companies. Your looking at whole generations, at least 2 that they would have to compensate more or less. That won't fly with big corporations. Sweep it under the rug and pay the lawyers and you'll never hear another word about it. Sorry to say it but that is the way it goes. Both to SJ and Jill. Big money can cover anything up and we are the ones that bear their cross. Maybe like the Tuskegee airmen, after the last of us is gone, big Pharma may have a comscience. But not right now while we still are here. :( Just a sad fact. The smoking gun is usually pointed at your own head unless it is something someone can bandstand against. Yeah it is sad and I may be a Debbie Downer, but too many time it has happened. :(

My wife is an attorney who frequently defends against class action lawsuits.  Trying to get compensated for this would not be worth the years and years of wasted litigation time and potential costs, only to be rewarded with a voucher for like $50 off your SRS in the end if you're lucky, while the attorney who was dumb enough to piss up that rope in the first place would end up pocketing jack squat and end up in the poor house.

F*** it.  I'm just going forward.  I'd rather waste that time in front of a Marshall stack than a jury.

Quote from: Jill F on September 10, 2014, 09:32:54 PM
My wife is an attorney who frequently defends against class action lawsuits.  Trying to get compensated for this would not be worth the years and years of wasted litigation time and potential costs, only to be rewarded with a voucher for like $50 off your SRS in the end if you're lucky, while the attorney who was dumb enough to piss up that rope in the first place would end up pocketing jack squat and end up in the poor house.

F*** it.  I'm just going forward.  I'd rather waste that time in front of a Marshall stack than a jury.

Unfortunately Jill that will be more or less what would happen. Something like 50 bucks for us. Far better sometimes to look forward and hope that it has more of an effect on society and how society perceives us than anything else. 50 bucks isn't even worth a bottle of Dom Periogn to celebrate a successful courtroom win with.

Quote from: Jess42 on September 10, 2014, 09:37:03 PM
Unfortunately Jill that will be more or less what would happen. Something like 50 bucks for us. Far better sometimes to look forward and hope that it has more of an effect on society and how society perceives us than anything else. 50 bucks isn't even worth a bottle of Dom Periogn to celebrate a successful courtroom win with.

50 bucks won't even get you a Veuve Cliquot anymore.  *le sigh*  Screw it, I'm a Bollinger kinda chick anyway.  C'est la vie.

Quote from: Jill F on September 10, 2014, 09:40:41 PM
50 bucks won't even get you a Veuve Cliquot anymore.  *le sigh*  Screw it, I'm a Bollinger kinda chick anyway.  C'est la vie.

Ok, so dumb little redneck girl I am even in my forties. WTH is that? I do know C'est la vie though. That was a Bob Segar Song. But the Veuve Cliquot, I am lost. ???

Quote from: Jess42 on September 10, 2014, 09:43:25 PM
Ok, so dumb little redneck girl I am even in my forties. WTH is that? I do know C'est la vie though. That was a Bob Segar Song. But the Veuve Cliquot, I am lost. ???

It's a bottle of Champagne that costs about fifty bucks now if you're lucky.

C'est la vie?  En Anglais- (loosely) "Such is life." 

Born between 1940 and 1971 (US) or 1980 (elsewhere) - No, a few years late for the US, but my mom had several miscarriages before she had me and took "some special and hard to come by" drug to prevent me being a miscarriage
Undescended testicles - No
Micropenis - a fully formed but considerably shorter than normal penis - No, just below average,(For there to be an average there have to be some below average, even if most won't admit this)
Hypospadias - No
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Not sure
Vestigial female organs or organ remnants - Probably not
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Yes, but just gynecomastica and lack of body hair, bone structure is inconsistent, I have small hands but broad shoulders, wide feet but tiny thighs

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Was bullied a lot but I fought back
Having no interest in sport - I don't really like sports, but I love the uniforms. I can get into sports a little after a few six-packs
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Ye.
Depression- At times, but I perhaps had reason
ADHD - They tried to pin that one on me as a kid
Other seemingly non gender related psychological problems - Who doesn't

I'm not sure if I am a DES son, like I said in my answer, I was a few years late, but my mom took something that was hard to get, and well, it worked, I was not a miscarriage. Asking her is hard because talking about her miscarriages makes her really sad, and she doesn't seem to know what it was. I'm her miracle baby, they told her after her last miscarriage she'd never conceive again, if she were to know that what she did to keep me did something to me I don't know how she'd react. If being trans is the price I have to pay to be alive at all, I guess I can live with that...

Quote from: Jill F on September 10, 2014, 10:00:44 PM
It's a bottle of Champagne that costs about fifty bucks now if you're lucky.

C'est la vie?  En Anglais- (loosely) "Such is life."

OK, 50 dollar bottle of Champagne, I really hope the bottle is like a half gallon or so. If not I can make my own with a lot more alcohol content a whole lot cheaper.  :-X Or at least buy it a lot cheaper with more alcohol and less CO2. ;)

I do know what C'est la vie is. I am in Cajun country and know that saying. Anywhere else people say "Crap happens" but not as nicely put. Down here it's C'est la vie.

@Satinjoy: Thanks for the compliment and your words. Whether or not my Mom was given DES in 1964 remains a mystery. However I can say yes to many of those questions including an undescended testicle(I only have one), micropenis, and vestigial female organs, and other genital abnormalities, just to name a few. I could name more but I don't wanna tie up the thread.

Again I thank Hugh, and those of you whom have responded here.

Best Wishes!

Ally :icon_flower:

Regarding the smoking gun, and by the way Jill I miss your pic and your smile but love the guitars, but regarding this, it isn't the lawsuits, and I know its hard to back it all up, or I guess it is, but it gives me peace of mind to know why.  It also gave me something to say to my family.  If they thought I deliberately wanted to be transitioned, and I am transitioned, then my wife would have left and I would be alone.  But, because I made the personal case for DES womb transition, she accepted me as trans.  It softened the blow for her as she cannot handle seeing Satinjoy.  But she can handle the genderqueer presentation that is startling to say the least with a full transitioned body covered in nylon and not wigged or surgically changed.

Bottom line, I would be screwed if I didn't know about DES.

My fear and my question to you if I dare ask it, is what could happen to me later?  I have high E levels, intentionally, that is a factor, but its the male mental functions that I am concerned about.  I need that, I am nonbinary to the core.

Blessings  SJ

When I read about DES, I get the urge to ask my mother but always chicken out.  I was born in 62 so it's possible.  I also wonder about all the man-made chemicals in our environment these days that are endocrine disruptors.  Lord knows if you look up many pesticides, flame retardants, suntan lotions, cosmetics, etc. they are consider or suspected of being endocrine disruptors.   Could these chemicals also be contributing to the issue?

Just curious what people think.
Paige :)

Quote from: Paige on September 11, 2014, 01:29:15 PM
When I read about DES, I get the urge to ask my mother but always chicken out.  I was born in 62 so it's possible.  I also wonder about all the man-made chemicals in our environment these days that are endocrine disruptors.  Lord knows if you look up many pesticides, flame retardants, suntan lotions, cosmetics, etc. they are consider or suspected of being endocrine disruptors.   Could these chemicals also be contributing to the issue?

Just curious what people think.
Paige :)

There were transwomen before and after DES, so I think pretty much anything that can disrupt a pregnant woman's endocrine system could be to blame. 

Born between 1940 and 1971 (US) or 1980 (elsewhere) - 1978 elsewhere
Undescended testicles - Nope
Micropenis - a fully formed but considerably shorter than normal penis - Shorter than normal, shorter than my siblings. Not what I would consider a micropenis.
Hypospadias - No
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Not sure how to check
Vestigial female organs or organ remnants - Not sure
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones - Somewhat.
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Some gynecomastia, but lots of body hair, upper body muscle was not that difficult to build.

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Bullied quite a lot, tried to fight back, mostly failed
Having no interest in sport - Little interest in sport.
People tending to assume you're gay; lots of men being attracted to you - No
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes
Depression- Sometimes
ADHD - No official diagnosis, but I suspected
Other seemingly non gender related psychological problems - I think everyone has those

To be honest I don't even know and probably am not a DES son. I was my mom's first and was conceived shortly after she married my dad, based on wedding dates and my birth date.

  I was born in 1977 in Canada - Is there a chance that I could have been exposed to DES or something similar?  My mother has never said anything about the period when she was pregnant with me but I can identify with many of the conditions listed (no deformities though).  If the likelihood is there then I will try to ask her about it.

Born between 1940 and 1971 (US) or 1980 (elsewhere) - 1977 Canada
Undescended testicles - No
Micropenis - a fully formed but considerably shorter than normal penis - No
Hypospadias - Not that I'm aware of
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Not sure how to check
Vestigial female organs or organ remnants - Not sure
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones - Somewhat.  Frequently noticed as slightly different than typical by others but they could not quite figure why.  Very lanky and not heavily masculinized but have disproportionately bigger hands, feet and head.  Often told I look like my mother.
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Light body hair, upper body muscle near-impossible to build.

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - No, but a shift to desiring friendships with girls more started during puberty and continued to heighten from there onward.
Being bullied a lot; having an inability to fight back - Bullied occasionally, knew I was best off not fighting back.
Having no interest in sport - Would have liked sports more but never had sufficient strength or endurance for it.  I only participate now because of the social element.
People tending to assume you're gay; lots of men being attracted to you - Almost always assumed gay.
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes - I'd say I'm a bit of a blend but I am transitioning to a fully female identity and appearance.
Depression- Started in late teens and went slowly but steadily downhill over the next 20 years.
ADHD - No
Other seemingly non gender related psychological problems - Unfocused anxiety that progressively manifested itself with increasing physical ills.  Lowering my testosterone virtually eliminated all traces of this and any lingering depression extremely quickly.

Born between 1940 and 1971 (US) or 1980 (elsewhere) - 1970 (US)
Undescended testicles - Nope
Micropenis - a fully formed but considerably shorter than normal penis - Shorter than normal, but I don't think it's a micropenis, but probably close to it.
Hypospadias - No
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - non that I'm aware of
Vestigial female organs or organ remnants - Yes
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - Penis is lower than normal and the distance between the base of the penis and the anus is shorter than normal

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones - Feminine hips and nipples
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Some gynecomastia, some body hair, definitely had the inability to build upper body muscle

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Yes, despite being the tallest kid in school
Having no interest in sport - Zero interest in sports
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes
Depression- Sometimes
ADHD - Suspected, but was diagnosed with Asperberger's Syndrome in my 30's
Other seemingly non gender related psychological problems - Asperberger's Syndrome

I was my mother's first born and she didn't have any miscarriages or history of them. However her mom and grandmother did have a history of miscarriages. My mother was given pre-natal vitamins (by injection) from her doctor and it's believed that those pre-natal vitamins contained DES which was very common at the time.

One thing I noticed while chatting in trans groups on facebook about digit ratios and other feminine skeletal markers is that, among the trans women older than 40, they tended to have more pronounced feminine skeletal markers that the ones younger than 40. I'm wondering whether this is something that holds up among trans women in general, and whether it could be due to the change from primarily DES-based miscarriage treatments, to those using progestins.

Aside from making you trans, I think one effect of being exposed to synthetic female hormones such as DES, is that it can mess up the part of your brain that controls hormones (the hypothalamus), so that, later in life, it tries to regulate your hormones as if you were a woman rather than a man. That doesn't fully work, but it does affect your bone and muscle development enough as you're going through your growth spurt so that you end up with a body structure that's more like a woman's than a man's. Maybe progestins don't produce this effect as strongly as estrogens such as DES, or perhaps it's because of a change in prescribing guidelines (the treatments currently used for preventing miscarriages and premature births generally aren't started until quite a bit later in the pregnancy than typically happened with DES).

In my case, it was a lot more noticeable in my teens and twenties, after that testosterone exposure (even at below normal male levels) had masculinised my body to the point where I didn't look particularly different from most guys any more. I've still got the female digit ratio and leg to trunk ratio though (these haven't changed, because after you're aged about 20 or so, your bones stop growing).

Here's a list of biological markers of having below normal male testosterone during childhood and puberty, which are known collectively as a "eunuchoid habitus":

* long, slender arms and legs
* feminine looking facial features
* legs significantly longer than the height of your upper body
* an armspan more than 3cm greater than your height
* sparse or very fine body hair
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area)
* an inability to build upper body muscle
* gynecomastica
* a female carrying angle
* a female digit ratio

Basically you end up with a body structure that's more like the female members of your family than the male ones. This type of body structure is often associated with intersex conditions, and just by asking around, seems to be way more common among MTFs and transfeminine people than among the cis male population, particularly among those of us born in the DES era.

WoW I can say "yes" to All of the Above in this list^^___^^.

Ally :icon_flower:

* long, slender arms and legs YES
* feminine looking facial features YES
* legs significantly longer than the height of your upper body YES
* an armspan more than 3cm greater than your height No, but my 6'1" height is probably why.  I have a 70" armspan.
* sparse or very fine body hair YES
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area) Not sure, but probably.
* an inability to build upper body muscle YES
* gynecomastia No, but I did experience hard, painful buds behind my nipples for about a year at the start of puberty, disappearing after.  They were far more painful than my HRT-based development.
* a female carrying angle YES
* a female digit ratio 0.9565 puts me almost dead-center between the male and female means.  I don't know what to make of this but it falls in line with the fact that I consider myself somewhat androgynous.

  Very interesting!

Yesterday I was looking through Google Newspapers, and I found this article from 1982 about DES sons:

http://news.google.com/newspapers?nid=1320&dat=19820827&id=kj9WAAAAIBAJ&sjid=kOkDAAAAIBAJ&pg=1570,8074893

At the time the article was written, it probably wouldn't have been apparent that there were high rates of hypogonadism amongst those exposed in addition to the fertility problems, and I don't think anyone realised there were gender effects at that stage (since most of us go through a long period of denial during which we try to fit in as male).

Nonetheless, it reinforces my opinion that there has been a cover up as far as the effects of DES on biologically male people are concerned, and that the CDC are lying when they claim DES "sons" (many of whom are now daughters!), experienced virtually no effects as a result of their exposure.

Obviously, if large numbers of people can be born intersexed and/or transgender as a result of exposure to one hormone, and the public be kept completely in the dark about that fact, then it makes it increasingly likely that other medical hormones are producing similar effects.

  THIS IS ME !!!!!!!!!!!!!!!!!!!!!

Yes Mom was on Hormones during my pregnancy.She was prescribed progesterone shortly after August 1970 tubal pregnancy so she could successfully have a baby. I was born in November 1971. It all makes sense now. THANK YOU!!!!!!!!!!!!

Born in 1976 in the Uk
Mother had eight miscarriages
Medical records 'destroyed'
Female identity
Responded well to estrogen
Female carry angle
Female finger ratio
Low self esteem
Feminine features
Sparse body hair, little facial hair
ADHD like symptoms but not ADHD as I respond to speed
Depression
Testicular cysts
Varicocele
Low sperm count and motility
Low semen production
Low testosterone (bottom of male range)
Non specific orchitis (years of testicular pain)
Feminine hip to shoulder ratio
Bullied at school
Men attracted to me (is this seriously a diagnosis point)
Little or no hair loss
Potential gynomastica but mild
Lacked upper body strength

Other notes:
Sensitive to amines, tartrazine.  Hives, sleep disruption and hyperactivity
High iq
Right handed but ambidextrous as child
Father exposed to DDT in high levels- urinary cancers and altzheimers
Mother suffers from multiple sclerosis, womb removed

And a kicker... Mothers sisters confirmed being given DES.  Both had breast cancers and wombs removed.  One daughter is female identified pansexual but has mild gender dysphoria (feels she is missing penis several times a week, among other symptoms).  Does not feel need to transition.

Yay.

Quote from: Emmaline on December 07, 2014, 09:04:11 PM

Men attracted to me (is this seriously a diagnosis point)

Actually it is. I included it because I was trying to think of all the things that made me different from most men, and that was one of them. When I was younger, I had gay men trying to pick me up just about everywhere I went (and even some seemingly straight ones would start giving me strange looks and acting in an overly friendly way towards me!). Presumably people were seeing a not very masculine looking man with feminine mannerisms and body language, and the way most of them were interpreting it was to immediately assume that I must be gay. It certainly seems to set off gay men's "gaydar" anyway! The irony is that I'm fully gynephilic and don't have any sexual interest in men.

Quote
And a kicker... Mothers sisters confirmed being given DES.  Both had breast cancers and wombs removed.  One daughter is female identified pansexual but has mild gender dysphoria (feels she is missing penis several times a week, among other symptoms).  Does not feel need to transition.

Yay.

I have heard that quite a few of the DES daughters have tomboyish behaviour, and that some of them are trans too. My personal theory about that is that it's not due to DES itself, but to progestins. Progestins are a group of synthetic hormones designed to target progesterone receptors, and they were often co-prescribed alongside DES. Although they're supposed to be mimicking a female hormone, all the early progestins were actually derivatives of testosterone, and turned out to have androgenic effects on female fetuses (e.g. see the wikipedia article on progestin induced virilization).

I posted an excerpt from "DES: the complete story" on my facebook timeline, which is one example where progestins were used in addition to DES. The author, a DES mother, was put on the standard "Smith and Smith" DES treatment, but in addition was given progestin injections. When she developed a bad reaction to them, she was put on birth control pills instead for the remainder of the pregnancy (these were one of the earliest BC pills and contained 10mg of progestin per tablet, far more than modern ones do).

https://www.facebook.com/photo.php?fbid=524576487645524&set=a.251330518303457.36616.100002795317730&type=1

Quote from: Laurette Mohr on December 07, 2014, 08:01:45 PM
  THIS IS ME !!!!!!!!!!!!!!!!!!!!!

Yes Mom was on Hormones during my pregnancy.She was prescribed progesterone shortly after August 1970 tubal pregnancy so she could successfully have a baby. I was born in November 1971. It all makes sense now. THANK YOU!!!!!!!!!!!!

You're welcome! Just knowing that there is a simple (if unfortunate) explanation for why I'm not quite the same as most people made a big difference to me, which is part of the reason why I'm trying to let trans folks know about what happened with DES.

You say your Mom was prescribed "progesterone" (which usually means progestins). Does that mean you were exposed to progestins rather than DES? If so, that would support a theory I have that progestins can have similar effects as far as male development is concerned as DES (which if true is quite important, because some progestins are still being given to prenant women).

HughE Said

You say your Mom was prescribed "progesterone" (which usually means progestins). Does that mean you were exposed to progestins rather than DES? If so, that would support a theory I have that progestins can have similar effects as far as male development is concerned as DES (which if true is quite important, because some progestins are still being given to prenant women).

My Mom was prescribed BOTH DES and progesterone. I was born in 1971. My Mom tried to get pregnant from the year 1962 onwards. In 1967 they declared her infertile. In 1970  August 1970 she began bleeding heavily and was found to have a tubal pregnancy. They started her on both before I was conceived and was kept on it while I was in the womb.  Now I am here today.

A review of my symptoms pre HRT:

* long, slender arms and legs Yes
* feminine looking facial features No
* legs significantly longer than the height of your upper body Yes
* an armspan more than 3cm greater than your height No
* sparse or very fine body hair No
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area) No
* an inability to build upper body muscle Yes
* gynecomastica No
* a female carrying angle Yes, 18°
* a female digit ratio Right hand only

  I had higher than normal T male levels before HRT and during the 6 month time off of Spiro a year ago. Muscle mass gain during HRT could be attributed to a low number of T receptacles in my muscles with possibly higher E ones. Possible due to the lack of T receptacles in certain areas of my body that the effect of the pre-natal DES might have been more selective in my body. The pituitary gland may have allowed that high amount of T in my system to compensate. An increase of prostate problems above the average male over 50 appears to be a symptom of DES sons as well. It is to this late transitioner.

Joelene

I've just set up a photobucket account, so I can share some images here in support of my theory that, through the use of DES as a miscarriage treatment, doctors, the FDA, and the pharmaceutical industry have inadvertently created somewhere in the region of 5 million people, born between 1940 and the early 80s, who have male bodies but brains that developed as female instead of male.

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FTimelineofeventsassociatedwithmalesexualdevelopment_zps15559ee0.png&hash=5a2c384d052657298280feea307b5b89e3aef769)
From this diagram you can see that male genital development is already complete by 13 weeks after conception, the only ongoing processes after that point being elongation of the penis and descent of the testicles. It follows that testosterone suppression during the 2nd or 3rd trimester will have minimal effects on the genitals - the penis will just end up shorter than it would otherwise have been, and the baby might be born with undescended testicles or abnormalities associated with testicular descent (such as hydrocele or inguinal hernia).

The standard treatment protocol with DES involved a dose that progressively escalated over the course of the pregnancy, so that by far the heaviest exposure to the drug occurred during the second half of the pregnancy:

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FDEScompletestoryp4excerpt25pc_zps566721d3.jpg&hash=f979af2494867ac7099bd7ca9640b8bf4acc9fcf)
(excerpt from "DES: the Complete Story")

This excerpt also gives some idea of the colossal doses that were being used. Gram for gram, DES is roughly the same potency as ethinyl estradiol, so 125mg per day (or even 5mg per day) represents an enormous amount of artificial estrogen. This excerpt also highlights an often overlooked part of the DES story: that DES was often co-prescribed with progestins, most of which at that time were derivatives of testosterone.

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FSlide12AMAsexualidentitywebcast_zps7d8318d4.png&hash=a7b51f486332bec6b3664922b1f4f63e3244f6b9)
This is a slide taken from a webcast about the importance of prenatal testosterone in determining which sex your brain develops as. The earlier diagram about genital development (which shows relatively flat T levels for the duration of the pregnancy), is an oversimplification, and there's actually 2 peaks of T production that are implicated in masculinisation of the brain, one about 17 weeks after conception and the other at about 30 weeks. I think that in my case the first one was more or less completely wiped out by exposure to artificial female hormones, but the second one occurred more or less as normal. The result is that, psychologically, I'm not really a man or a woman but kind of a mixture of the two. There's also been an effect on my body's ability to control hormones, but more on that later.

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FBrainSex_ch2009_zps8f4ae3b5.gif&hash=f28fd124c627a273063d12e8734af3f1b2c39ede)
(excerpt from "Brain Sex" - click on image to enlarge it)

What this shows it that it's been known for a long time (the book was published in 1989, and the research they're discussing was carried out in the 1970s), that prenatal exposure to artificial hormones results in behavioural alterations later in life - feminized behaviour in males exposed to DES, masculinized behaviour in females exposed to artificial androgens (first generation progestins, danazol or anabolic steroids).

One minor quibble is that they've either poorly explained or misunderstood what happened, with their comment about why behaviour was feminized, even though the genitals developed as male. As I was saying earlier, I think that is just a matter of timing. Due to the way DES was being administered, I think testosterone production generally only started to be heavily suppressed after genital development had already completed, and so you've ended up with people with relatively normal looking male genitals, but brains that developed as female instead of male. If DES had been administered in heavy doses from beginning to end, I think the resulting "DES sons" would have had female reproductive organs as well as female brains.

It wouldn't have been apparent at the time "Brain Sex" was written, but I bet if you went back and talked to those hormone-exposed people now, you'd find that a lot of them are trans.

As discussed in this paper:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146061/

both male genital development and masculinization of the brain are driven by the action of testosterone (and its derivative DHT), not by whether you have a Y chromosome or not. In that paper they induced male development in genetic females by administering testosterone or DHT to the mother. It's only reasonable that administering a testosterone blocking drug (such as DES) to pregnant women should produce the reverse effect, of female development in genetic males. Based on everything I've seen since I first started looking at all this in 2011, that's exactly what's happened with DES, only the numbers affected are so large and the blame for what happened so widely spread that nobody is prepared to admit what happened, and the whole thing's been covered up.

I can't believe that I have never heard of this before. It answers so many questions. I was born in 1957. My mother said that she had a hard time carrying a baby. And her Dr.  told her that if she was ever going to have one it had to be right away. She had me and then had a hystorectomy soon afterward. This helps explain my small stature , low sperm count , cyst on testicles , low sex drive. I am a walking poster child for this and never knew it....WOW !!!! Wouldn't be surprised when I go in for blood tests for HRT that my levels may be closer than I think.

Yep, you're far from alone. Those sort of effects seem to be really widespread among DES "sons".

I recently found a free to view version of a paper, "Follow-up study of Male and Female Offspring of DES-Exposed Mothers",
http://journals.lww.com/greenjournal/Abstract/1977/01000/Follow_up_Study_of_Male_and_Female_Offspring_of.1.aspx

Click on "PDF" and you can download a full copy of the paper.

Although it was fine a couple of days ago, the link wasn't working when I tried it just now, so I've put a copy of the PDF on my Google Drive, just in case anyone has trouble accessing that one:
https://drive.google.com/file/d/0B-U464GiBN9tdjJFQ1FHcG9wUGs/view?usp=sharing

Table 1 shows the (absurdly high) doses that were being used under the standard "Smith and Smith" regimen for prevention of miscarriage (which is what the people in this study were exposed to):
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FBibbo1977Table1DailyDosageofDES_zpsff65f2bb.png&hash=d3cb14c3189a93521babb4e6b99f1a2bc53a35be)
This is of a drug with similar potency to ethinyl estradiol, something which is normally dispensed in micrograms, not milligrams!

If you look at this page about prostate cancer treatment:
http://www.hrpca.org/estrogens.htm

DES at doses of between 1 and 3 mg per day will completely suppress testosterone production in adult men (1mg per day is usually enough; 3mg invariably causes total testosterone suppression).
(as an aside, considering the increased risk of thromboembolism with even those comparatively low doses, there must surely have been a lot of fatalities amongst the women given DES miscarriage treatment!)

Anyway, what this shows is that the exposure was relatively modest during the critical period for genital development (7 - 12 weeks after conception), but very high (50mg+ per day) throughout the second half of the pregnancy, which (according to the monkey research) is when the differences between male and female brains arise. Unless a developing fetus is somehow magically immune to the effects of DES, that makes it more or less inevitable that anyone who was exposed to this treatment had their testosterone heavily suppressed throughout the critical period for sexually dimorphic brain development, which, in theory at least, should result in the brain developing as female instead of male.

Although this particular paper was only looking at the physical effects of DES exposure, there's still some very useful information from it - that there were much higher rates of genital abnormalities and signs of incomplete masculinization among the DES sons than the control group, and even more significantly, massive differences in fertility between the two groups.

"The most striking results are related to the sperm count. The average value of sperm density (count/ml) is approximately 2 times (factor of 1.93) lower in the DES-exposed group...The average quality score is in the pathologic range for the DES-exposed group (6.9) and normal for the control group (1.4.)...Ejaculate volumes of less than 1.5 ml were observed in 10 out of 39 subjects (26%) in the DES-exposed group versus 0 out of 25 in the control group...The results show that only 14 of 39 (36%) of the DES-exposed group can be classified as normal whereas the control group shows 18 of 25 (72%) with normal scores...11 of 39 (28%) of the DES-exposed group received scores greater than 10, classified as "severely pathologic", whereas none of the 25 subjects in the control group received this score."

If sperm counts are on average halved, then production of that other thing the testicles make - testosterone - has probably been halved too. That would explain why I, and seemingly a high percentage of DES sons, have developed a "eunuchoid" body structure and other signs of undervirilization.

It's also completely at odds with what the CDC says on its DES sons page:
http://www.cdc.gov/des/consumers/about/effects_sons.html

DES Sons are not at an increased risk for infertility

Obviously both statements can't be correct, either Bibbo et al (and quite a few people that I've chatted to on facebook and on this forum it seems) were somehow mistaken, or the CDC are telling a pack of lies. I think it's the CDC, and the FDA before them. They, the pharma industry along with whatever doctors were in the know, have all closed ranks to cover up the fact that, through promoting and prescribing this phoney quack remedy DES, they've inadvertently created several million people who are genetically male and were assigned male at birth, but have various intersex-related abnormalities and female brains.

Born between 1940 and 1971 (US) or 1980 (elsewhere) - Yes - 1962

Undescended testicles - No

Micropenis - a fully formed but considerably shorter than normal penis - Meh.... it was unremarkable

Hypospadias - No

Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Not sure

Vestigial female organs or organ remnants - Not that i'm aware of

Intersexed genitals similar to grade 3 PAIS - No

Other genital abnormalities - Yes - Found out i'm infertile when the ex and I tried to start a family. Got a brief exam down there and the doc noted what he thought was a varicocele. Don't know if there is anything else going on.

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones - Yes! Look at my avatar picture - female. I have always had a feminine face

Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Yes - very little body hair, small wrists and ankles, feminine legs and butt, my feminine face

Very shy, socially passive behaviour as a teenager - Yes!

Difficulty forming friendships with boys; having a special affinity with girls - Yes

Being bullied a lot; having an inability to fight back - Oh Lord yes!

Having no interest in sport - I royally sucked at playing pretty much all of them, and being a physically small kid the deck was stacked against me.

People tending to assume you're gay; lots of men being attracted to you - Not sure about this one; maybe. No one ever hit on me in an obvious gay pick up attempt, but guys would take a look at me and would immediately not respect me.

Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes, I even thought I was nonbinary for a time.  I don't ID as male at all anymore.  It was just part of an act that kept me from getting bullied.

Depression- Yes, but I'm not since transitioning.

ADHD - Ye..... what were we talking about again?

Other seemingly non gender related psychological problems - Yep - Alcohol abuse and some other stuff.

The weird thing about me is that my mom swears she didn't take DES when she was carrying me. Yet, the infertility, the abnormalities on my testicles, my very feminine appearance, and the fact that I am a transsexual all seems to fit perfectly with in utero DES exposure. This was the early 60's and there were all kinds of shenanigans going on with the chemical and pharmaceutical companies back then so who knows what I might have been exposed to it if wasn't DES.

I also was a physically small guy (110 lbs, 5'7", size 26 waist jeans) until I was about 25-26 and then I had a growth spurt and I filled out. I still don't know what that was all about.

I have assumed for years that DES was to blame for my GID.  Born in 1966 with my mom on a number of doctor prescribed things including vitamins which back then carried DES. 
I have two kids though, grew lots of body hair, had a feminine body, curvy hips (wah.. it went away when I filled out around 24), feminine bones, etc, etc, etc... I'm not just mentally a girl but have physical traits too. 
My hormone levels don't seem too crazy though. 

I very well could have been.  Our local hospital was/is used as a teaching facility.  I was born in late '68 and have always had slender arms that were highly resistant to building muscles.  When I come out to my mothere I'll have to ask her.  I'd always wondered if there might be some kind of link between gynecomastia and my gender disphoria.  Funny, when they started to grow I wanted them to grow more. 

-Alana

Quote from: HughE on January 15, 2015, 09:04:50 AM
"The most striking results are related to the sperm count. The average value of sperm density (count/ml) is approximately 2 times (factor of 1.93) lower in the DES-exposed group...The average quality score is in the pathologic range for the DES-exposed group (6.9) and normal for the control group (1.4.)...Ejaculate volumes of less than 1.5 ml were observed in 10 out of 39 subjects (26%) in the DES-exposed group versus 0 out of 25 in the control group...The results show that only 14 of 39 (36%) of the DES-exposed group can be classified as normal whereas the control group shows 18 of 25 (72%) with normal scores...11 of 39 (28%) of the DES-exposed group received scores greater than 10, classified as "severely pathologic", whereas none of the 25 subjects in the control group received this score."

If sperm counts are on average halved, then production of that other thing the testicles make - testosterone - has probably been halved too. That would explain why I, and seemingly a high percentage of DES sons, have developed a "eunuchoid" body structure and other signs of undervirilization.

I've made a couple of posts on another thread expanding on what I've said there, so I thought I'd transfer the gist of them to this one, in case anyone's interested and to keep everything in the one place.

In Bibbo 1977 (where the above quote came from) and a couple of other papers I've seen looking at the same cohort of DES sons, they're briefly mentioned the results of blood tests of the DES sons vs controls. The total T is a bit lower on average, but the results don't look very different from the control group. However, the blood work they've published is incomplete. All they've shown are the total testosterone, LH and FSH. They haven't shown two key measurements: sex hormone binding globulin (SHBG), and free testosterone.

Free T, not total T, is the important thing as far as the biological effects of T are concerned. SHBG is important because, if it's high, then it binds up almost all of the T in your body and you can end up with what looks like a quite respectable T level based on total T, even though free T is well below normal. From reading what people have said in some hypogonadism forums I belong to, a common problem they encounter through badly administed T replacement is that their estradiol (E2) goes high, and this in turn causes their SHBG to go high. They end up with what looks like quite a respectable total T level, but their free T remains low, and they continue experiencing the symptoms of hypogonadism.

The ideal SHBG level for males is apparently around 20 ng/dl. In the blood work I've had done, and in the blood work of 2 DES sons I've chatted to about this, our SHBG levels have all been around 40 ng/dl. None of us know our E2 levels (doctors hardly ever request E2 in blood work for males), however I've got gynecomastica and so has at least one of the DES sons I've been chatting to. As most of you probably know, breast development is a good indication of higher than normal male E2!

What I think is going on is that, in biologically male people who've been feminised by prenatal exposure to drugs such as DES, our bodies try to generate a hormonal state in between male and female. They do this by increasing E2 production to above normal male (perhaps by ramping up expression of the aromatase enzyme), and reducing T production to about half normal male. As a side effect, the lowered T production means the testicles don't grow to full size and only produce about half as much sperm as normal. Meanwhile, the elevated E2 causes SHBG to rise well above what it would otherwise have been, and all this excess SHBG results in a large reservoir of inactive T, which means the total T doesn't look too bad even though both the production and consumption of T are only about half of normal.

All this is speculation of course, since none of us had our hormone levels tested in our 20s, and the published research hasn't included measurements of SHBG or free T. However it would tie in with my developing a eunuchoid body structure and other signs of low T, something which (judging by the comments on this thread and what I've seen people saying on facebook), happens a lot amongst DES exposed individuals!

The two DES sons I've been chatting to (both of whom have gender dysphoria, but for personal reasons aren't currently in a position to transition), both have symptoms of hypogonadism and were refused treatment by their doctors because their T levels were "normal". One had a total T of about 500 ng/dl and the other 350ng/dl (which is actually well below normal), however the free T in both cases was very low - 60pg/ml and 71pg/ml, due to their SHBG being quite high. I don't have their blood work written down, but from memory the one with total T 500 had SHBG 45 and free T of 60 pg/ml, the one with total T 350 had SHBG about 35 and free T of 71 pg/ml. These are extremely low values for free T.

From a study aimed at determining what T levels should be in normal, healthy men:
http://press.endocrine.org/doi/full/10.1210/jc.2010-3012

"In a reference sample of 456 men, mean (sd), median (quartile), and 2.5th percentile values were 723.8 (221.1), 698.7 (296.5), and 348.3 ng/dl for TT and 141. 8 (45.0), 134.0 (60.0), and 70.0 pg/ml for FT, respectively. In all three samples, men with low TT and FT were more likely to have slow walking speed, difficulty climbing stairs, or frailty and diabetes than those with normal levels. In EMAS, men with low TT and FT were more likely to report sexual symptoms than men with normal levels. Men with low TT and FT were more likely to have at least one of the following: sexual symptoms (EMAS only), physical dysfunction, or diabetes."

I read this as saying that "normal" (within 1 standard deviation of the mean) total T in men ranges from 500 to 950 ng/dl, and free T 100 to 195 pg/ml. If your total T is below 348 or free T below 70 pg/ml you're in the bottom 2.5 percent of the range, the people with "slow walking speed, difficulty climbing stairs, frailty and diabetes". Both of the people I've been chatting to have free T levels at or below 70 pg/ml, and problems with low enegy, depression, brain fog, ED etc, typical symptoms of hypogonadism. One has already developed type 2 diabetes which has become insulin dependent. Yet they've both been refused treatment by their doctors. I don't know what doctors are basing these decisions on, but it certainly isn't based on science or improving the health of their patients!

Going on my experiences, your body seems to be able to handle having abnormally low hormone levels OK while you're young, but as you get older the hormone imbalance gets worse and worse, and you start developing all sorts of health problems as a result in middle age. Incidentally, going on female HRT protects you from all this, because the estradiol you take as part of your HRT replaces the missing T.

Those two haven't yet started on any kind of HRT. Unfortunately I don't have any blood work from prior to taking hormones, but here's two sets of blood work I had done last year, by which time I'd been on fertility meds for about 3 years.

In this first one,

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2F1stbloodworkAndropanel_zps1ce5f5f1.png&hash=27c71a78a7db696721298884445f1742d7369a9e)

I'd been taking my usual combination of fertility meds (clomid and HCG) and progesterone cream. Everything in that test looked OK, not just that part of the panel but everything else too (apart from my cholesterol being slightly elevated, but not enough to warrant taking action).

Using a separate online calculator, my calculated value for free T is 128 pg/ml, which is just a little bit below the average for free T (141.8 pg/ml) in that study of healthy men I linked to earlier. I felt pretty good the day of that test, alive, full of energy and with no aches or pains.

In this second test,

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2F2ndbloodtestresults_zps758e8d8c.png&hash=b5723155ec6ddc9b9794604143498426faa6c1ea)
(15.2 nmol/L = 438 ng/dl)

I'd stopped taking fertility meds for 5 days. You can see how the total T has fallen by about a third, and the LH and FSH readings have basically collapsed. The FSH is flagged as being below the lower limit of the lab range (and probably the LH reading would have been too, except there would still have been some HCG in my system, which shows up as LH unless they do a special test to exclude it). That second test is basically what secondary hypogonadism looks like - LH and FSH are low, and so is total T.

Using the online calculator, my free T would have been 86 pg/ml, so it had fallen below the "normal" (100 - 195pg/ml) range for healthy men, but was still higher than what the 2 people I've been chatting to are having to put up with. I'd felt rough the day before the test and quite unwell on the morning the blood was drawn (I was actually supposed to wait a further 2 days before having it done, but by that stage had decided enough was enough, why make myself sick for a further 2 days).

Unfortunately, the doctor I saw following that second blood test (who is the senior doctor at that practice) turned out to be a total bastard. He refused to refer me on to an endocrinologist, or for a DEXA scan to assess my bone density, or for an MRI scan to see whether I have a brain injury that might explain my being hypogonadal. This is despite the fact that, apart from the blood work, I look kind of intersexed, and a physical examination would show that I have eunuchoid proportions and other symptoms of hypogonadism. I got a very strong impression that, if it had been up to him, I wouldn't have even had the tests I've had done, and I was quite lucky that I saw a junior doctor there on my first couple of visits who ordered them for me. So I'm not sure what was going on there, perhaps the practice has to bear some of the costs for those tests, or maybe he was just one of those doctors who turn eugenicist when dealing with trans and intersex folk. Either way, he's basically trying to condemn me to a slow and horrible death, and it hasn't done a lot to restore my faith in medicine. It makes me wonder how many other people like me are out there with endocrine systems damaged by drugs such as DES, whose health is now failing as a result, and are being lied to and denied treatment by their doctors.

Interesting:
http://www.jaacap.com/article/S0890-8567(09)64914-5/abstract
"This report concerns the role of prenatal hormones in normal and abnormal psychosexual differentiation. Several studies indicate that perinatal treatment of infrahuman female mammals with diethylstilbestrol (DES) masculinizes certain features of their brain and behavior."

Quote from: anjaq on January 24, 2015, 09:54:42 AM
Interesting:
http://www.jaacap.com/article/S0890-8567(09)64914-5/abstract
"This report concerns the role of prenatal hormones in normal and abnormal psychosexual differentiation. Several studies indicate that perinatal treatment of infrahuman female mammals with diethylstilbestrol (DES) masculinizes certain features of their brain and behavior."

They haven't said what animal species they were studying in the abstract, however I gather that DES causes brain masculinisation in the two most commonly used lab animals, rats and mice. This is because, in rodents, brain masculinisation is mainly driven through estrogen receptors rather than androgen receptors. In rodent fetal brain cells, testosterone is converted into estradiol via the aromatase reaction, and this estradiol then activates estrogen receptors and switches on their genes for brain masculinisation. However, that's something that appears to be specific to rodents. It doesn't apply to human beings or Rhesus monkeys anyway. There's two lines of evidence showing this, firstly this paper:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146061/

in which two androgenic hormones, testosterone (aromatatizable) or DHT (non-aromatizable), both proved equally effective in masculinizing female monkeys' brains. This shows that estradiol isn't necessary for brain masculinization in Rhesus monkeys, and is a strong indication that the whole thing's being driven through androgen receptors, not estrogen receptors.

Secondly, there's the fact that CAIS women seem to universally identify as women, and have female rather than male behaviour. The sole difference between CAIS women and the genetically male people who turn into men is that they have a mutation which renders their androgen receptors inoperative, so all their development takes place as if there were no androgenic hormones present. Their aromatase enzyme, estradiol production and estrogen receptors are all completely unaffected by the mutation. If brain masculinisation were driven through estrogen receptors in human beings, there'd be large numbers of FTM CAIS women queing up for SRS etc. That's not what happens though, which basically proves that brain masculinization in humans is essentially entirely driven through androgen receptors, and estrogen plays no role.

That one odd quirk of rodent physiology appears to have led to a lot of confusion about the effects of DES on human beings, and to most researchers in the field barking up completely the wrong tree (as the paper you've linked to shows). DES is a powerful testosterone-suppressing drug, and the standard dosing scheme for miscarriage prevention resulted in doses more than 10x higher that what will totally suppress testosterone in an adult man, being administered throughout the second half of the pregnancy (which appears to be the crucial time as far as the brain development responsible for gender identity later in life is concerned).

   Hi Hugh, your testosterone description was interesting.My tt just before hrt was almost 1400 but the FT was only 80 and my e was over 40. The other one was tested also and was high but I am to lazy to look for it right now.They also checked a couple of more and I believe they were very borderline also.All that is ancient history now as my levels look like what I am  a woman.

   Hey Hugh I have another question. Has there been any research on those of us with cysts being more prone to hernias. My father his brother and myself all had to have the lower unit screened due to hernias. As far as I know my brothers did not have the cyst and never had to have a hernia repair.

Hi Hugh,

My being intersex my T before hrt was 38 while my E was 74 pg/ml. As a female hermaphrodite(Yes, I hate the "H" word and prefer IS. but for purpose of others understanding what I am it will suffice). Being born in 1964 I'm quite confident I may fall in this group despite being genetically female and the fact I was born on a reservation. I was also an 8 month preemie too but being a preemie I doubt has anything to do with it.

I truly thank you for all your work and study, also your time it took to research the information you've posted here. Finally i may possibly have some answers to the many questions i have, but am unable to ask my biological mom given she's deceased.

Again, thank you.
Ally :)

Quote from: justpat on January 25, 2015, 06:19:04 PM
   Hey Hugh I have another question. Has there been any research on those of us with cysts being more prone to hernias. My father his brother and myself all had to have the lower unit screened due to hernias. As far as I know my brothers did not have the cyst and never had to have a hernia repair.

Yes. I was born with a hydrocele, which worsened during my childhood until a loop of my intestine forced its way through the gap, producing an inguinal hernia.

I've recently found a paper which confirms that defects involving incomplete closure of the Processus Vaginalis (inguinal hernia, hydrocele, and cryptorchidism), and epididymal abnormalities, are all linked defects.
http://www.ncbi.nlm.nih.gov/pubmed/8911389

Association of epididymal anomalies with patent processus vaginalis in hernia, hydrocele and cryptorchidism.
RESULTS: A closed, partially closed and open processus vaginalis was associated with an abnormal epididymis in 14, 36 and 69% of cases, respectively. Epididymal anomalies were more frequent in association with undescended (72%) than descended (34%) testes.
CONCLUSIONS: These data confirm the observation of a higher incidence of epididymal anomalies associated with patency of the processus vaginalis irrespective of testicular position, and they support the theory that androgenic stimulation may be required for closure of the processus vaginalis as well as epididymal development.

Since epididymal cysts are a very common marker of DES exposure, in my mind, the likely explanation for these defects all being linked is that they're all common side effects of DES exposure, and a lot of the people who have them are DES babies (particularly in light of them also talking about a lack of androgenic stimulation as the cause!).

http://en.wikipedia.org/wiki/Processus_vaginalis

something  to  keep  in  mind. 
  back  when,  was  not  the  age  of  information.    so  mom  walks  into  the  docs  office,  the  rabbit  dies,  and  shes  handed  a  handfull  of  pills. 
  back  then,  there  were  no  real  questions,  or  answers.  mom  just  swallows  the  pills,  as  doctor  knows  best.
  I  read  stuff  on  this  issue  a  decade  ago.    most  women  simply  dont  know  if  they  took  it,  or  if  they  did,  in  what  frequency, duration   or  dose. 
  paper  records,  long  lost.  deceased  mothers,  long  list  that  makes  the  info  hard  to  find. 
  there  was enough  info  and  research  to  say  it  could,  and  probably  did  have  some  effect,  but  past  that,  its  history,  plain  and  simple. 
my  mom  passes  last  feb,  in  1014.  she  was  born  in  1917.    she  was  43  when  i  was  born.  I  am  57.   there  are  studies  that  suggest  a  womans  age affects  transgender  identifacaton,  especialy  if  conception  was  during  the spikes  or  lulls of  hormone  producton  of  menapause. 
  at  a  point,  we  are  what  we  are.  we  cant  change  it,  most  wouldnt  if  they  could. 
  point  being,  unless  there  are  underlying  medical  issues,  dont  lose  the  sleep  over  it. 

Quote from: lilredneckgirl on January 30, 2015, 01:05:24 AM
she  was  born  in  1917.    she  was  43  when  i  was  born.  I  am  57. 

I know this is silly but I just have to ask.   Something doesn't add up, 1917 + 43 = 1960, then you should be 55 or 54.  You're younger than you think ;-)

Paige :)

I recently acquired a book about medical diasters, "Worse than the Disease", that includes a fairly substantial section on DES. This is what the authors had to say about the role of the regulatory authorities in the disaster.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FWorsethantheDiseaseDESregulatoryfailure_zps7383e828.jpg&hash=ffd5a31a94600eed5e9c649e78af4f3fcc6a1aa8)

They're talking about the FDA and USDA, however, as I was saying earlier, it looks like much the same applies to the CDC too. I've just found a transcript of a teleconference in which a bunch of senior doctors at the CDC are blatantly lying about the incidence of genital abnormalities and fertility disorders in DES sons.
http://www.cdc.gov/des/consumers/tele/DESSonsTeleconference.pdf

Referring back to what it says in the paper I've linked to earlier (with similar findings in two other studies of that group of DES sons, the Dieckmann cohort).
"The most striking results are related to the sperm count. The average value of sperm density (count/ml) is approximately 2 times (factor of 1.93) lower in the DES-exposed group...The average quality score is in the pathologic range for the DES-exposed group (6.9) and normal for the control group (1.4.)...Ejaculate volumes of less than 1.5 ml were observed in 10 out of 39 subjects (26%) in the DES-exposed group versus 0 out of 25 in the control group...The results show that only 14 of 39 (36%) of the DES-exposed group can be classified as normal whereas the control group shows 18 of 25 (72%) with normal scores...11 of 39 (28%) of the DES-exposed group received scores greater than 10, classified as "severely pathologic", whereas none of the 25 subjects in the control group received this score."

Compare that to what the senior CDC official in the teleconference, Dr. Titus-Ernstoff, says:

"As most of you know, DES exposure has strong effects on fertility and reproductive outcomes in women. Consequently, the influence of DES on these outcomes in men is of key interest. Results from a few studies, including those based on the Dieckmann and Mayo men, provide little evidence of sperm abnormalities, although one study suggested that sperm motility might be lower in the DES exposed men. DES exposure does not appear to be associated, however, with low sperm counts or with Eliasson scores, which seem to be unaffected by DES exposure. "

There's no two ways about it, she's telling a total pack of lies!

Reading through it, that whole teleconference was nothing short of a whitewash. Along with outright lies about the incidence of genital abnormalities and fertility disorders, they've dodged the gender identity issue and talked about sexual orientation instead. I don't see how it can be a mistake or misunderstanding. The whole thing reeks of a cover up to me.

Looking at the Q&A section, some very valid points were raised which the CDC officials completely evaded:

Q:
"Dr. Titus-Ernstoff, I am with the DES International Network, and I'm pleased to connect with you and Dr. Messing as well. We've not had a chance to actually talk before, but I think it might be worthwhile in the future.
I have a question briefly. Our network is about five years old, and I'm quite familiar with your research study on psychosexual effects and have been through actually the entire range of studies going back to the 1970s that have looked at psychosexual effects and gender issues in DES exposed people. I wonder if you would briefly just address the question of why it could be possible that although your study seems to be finding "no or very little impact on adult sexual behavior," we have, in fact, in our network found over 100 individuals with known or likely exposure who also have a history of gender variance experiences or transsexualism."

A:
"Sure. I'd be happy to address that. First of all, I think what I'd like to do is talk about why you are seeing something that's very different from what we've seen. I think that we can start with the possibility that some of the people that are in the network do not have confirmed DES exposure. A very important strength of the NCI study is that every single person in that study has DES exposure confirmed by medical records. While medical records may not be infallible, that's about as close to perfection as we can get."

What she fails to mention is that, firstly, in their research, they were only looked at sexual orientation, not gender identity. Since they never looked for it, it's hardly surprising they found no effects on gender identity. Secondly, the study group of DES sons they used, the Mayo cohort, aren't typical DES sons at all - their average exposure was much lower than under the standard "Smith and Smith" regimen for prevention of miscarriage (720mg over the course of of a pregnancy vs 12 grams under "Smith and Smith", according to one of the CDC's own papers, or a 15x lower dose than most typical DES babies were exposed to).

...
Q:
"Yes. I have a question, please. My son, I was a DES mother, and it wasn't found until he was 40 that his testicles did not develop. What I was wondering, they did the testosterone test on him, but I worked in the medical field ,and what I was wondering, is it important to monitor the testosterone and the estrogen level? Because from what I understand if the estrogen level creeps up sometimes that can destroy the testosterone. I may be wrong. I don't know."

A:
(a completely nonsensical answer from one of the other Drs at the teleconference to what was a very valid question)

...

Q:
"Hi. Given Dr. Titus-Ernstoff's psychosexual study did not include gender identity and given the large amount of studies which indicate that proper testosterone levels are very important to the masculinization in men ... and that many university lecturers discuss the relationship between prenatal hormone levels and gender identity, i.e., Harvard Medical School, University of South Florida, etc., and even the Merck Manual states biological factors such as gender complement and the prenatal hormone largely determine gender identity, does the CDC have any plans to acknowledge any of these studies and university lecturers and their continuing research on DES exposure to genetic males?"

A:
"...In our study, we had a hard time evaluating homosexual orientation, even though it's not that rare. To look at something more subtle, like gender identity, or more rare, like transsexuality, would be almost impossible in our study..."

Really? Being trans is harder to spot than being gay? What planet do these people live on? From memory it was something like 150 out of 500 DES "sons" who identified as women in the Kerlin/Beyer study, which is hardly rare either.

The whole thing just reinforces my opinion that there are plenty of people in the pharma industry and the upper echelons of organisations such as the CDC and FDA, who know all too well about the link between DES exposure and trans/intersex, and they've all closed ranks to keep the public and the unfortunate victims in the dark about it.

Quote from: HughE on January 30, 2015, 09:10:20 PM
The whole thing just reinforces my opinion that there are plenty of people in the pharma industry and the upper echelons of organisations such as the CDC and FDA, who know all too well about the link between DES exposure and trans/intersex, and they've all closed ranks to keep the public and the unfortunate victims in the dark about it.

Thanks HughE,

Interesting reading.   It's interesting that the U.S. avoided the Thalidomide horror story, but didn't manage to avoid the DES mess.  On the other hand, if you look at all the things being done by chemical and pharmaceutical companies during this time, I'm guessing they just got very lucky with Thalidomide.

Paige :)

HughE, thanks so much for this series of posts regarding DES.  I recently had a bout of testicular pain, and at age 61 and a DES son, this was particularly alarming.  In the ultrasound, sure enough, multiple epididymal abnormalities were noted.  By the time I got to see a urologist, though, the pain had gone away, so he dismissed the abnormalities when he found out that I was a DES son.

Another thing that's odd is my body's reaction to T and to E.  I've been on light doses of both at different times in my life.  (I'm currently considering transition, so I'm pre- a normal transitioning dose of HRT.)  T made me angry, sullen, depressed, in short a real a** to live with.  E on the other hand calmed me, made my anti-depressant work better and improved my overall focus and mental abilities.  That shouldn't have happened if I were a "normal" male.

I'm also quite hypo-thyroid, the first instance of such in either side of my family.

Some else here mentioned a growth spurt at age 25 or so.  I had that same experience.  I was this skinny underdeveloped something until around that time, then bam, finally grew shoulders and chest and began to look a lot more "male-ish", at around 24 or 25. 

In any case, it's apparent that DES upended the normal operation of my endocrine system as well as causing all of the developmental issues.

Thanks again.  This has made fascinating reading. 

Hello, what was the exact cut off for use of DES? I was born October 72. I have rather wide hips for a male, small wrists, can double cross my legs, and my ring and index finger are the exact same length.

Quote from: GothFriendly on February 09, 2015, 11:59:49 PM
Hello, what was the exact cut off for use of DES? I was born October 72. I have rather wide hips for a male, small wrists, can double cross my legs, and my ring and index finger are the exact same length.

The FDA withdrew its approval for DES as a treatment for preventing miscarriages in 1971, however plenty of doctors within the US continued to prescribe it "off-label" for years after that. In Europe, the FDA guidance didn't apply, and it continued to be used throughout the 1970s. I'm not sure about the situation in Australasia, but probably they carried on using it throughout the 1970s too. By about 1980 it was being phased out as a treatment for preventing miscarriages in most parts of the world, so people born more recently than that are unlikely to have been exposed to DES (although they could have been exposed to some of the other hormones that replaced DES).

So the answer is, yes, you could well have been exposed!

Quote from: HughE on February 10, 2015, 02:24:21 PM
The FDA withdrew its approval for DES as a treatment for preventing miscarriages in 1971, however plenty of doctors within the US continued to prescribe it "off-label" for years after that. In Europe, the FDA guidance didn't apply, and it continued to be used throughout the 1970s. I'm not sure about the situation in Australasia, but probably they carried on using it throughout the 1970s too. By about 1980 it was being phased out as a treatment for preventing miscarriages in most parts of the world, so people born more recently than that are unlikely to have been exposed to DES (although they could have been exposed to some of the other hormones that replaced DES).

So the answer is, yes, you could well have been exposed!

Wow, thank you!

I was going through some old papers and found the report from the fertility doctor from years and years ago back when my ex and I were trying (and were failing) to start a family. Can anyone decode this med-speak? I have no idea what it says. I'm curious if what was said earlier about the effects of DES on the reproductive system might have affected me.

"Semen analysis performed on <date>. Noted total motile ct. of 18.7 x 10 (6) with %30 overall motility and progression of +1 +2. Penetrak was 35 and post wash 24 hour survival noted %70 motile with %50 +2 and %20 +3 progression - sparse density noted on the swim up. Morphology noted %70 normal forms, but also noted %15 of the specimen with acrosomal deficiency".

It also notes a "Possible ocele".

Hi Eva,

Normal sperm count is 40-300 X 10 (6)...It doesn't appear you have this number.  Rather, they state that you had 18.7 million that were motile (moving spontaneously) and that was 30% of the total.  The swim up numbers appear OK.  Overall, those numbers indicate you could have fathered a child.  I do not understand the "sparse density on the swim up" comment.  The word "ocele" is unknown as well.....if they meant "varicocele", that is talking about the veins that drain the testicles....  Lost on that one.  Sorry.

Hugs,

Jen

Quote from: JLT1 on February 14, 2015, 06:58:54 PM
Hi Eva,

Normal sperm count is 40-300 X 10 (6)...It doesn't appear you have this number.  Rather, they state that you had 18.7 million that were motile (moving spontaneously) and that was 30% of the total.  The swim up numbers appear OK.  Overall, those numbers indicate you could have fathered a child.  I do not understand the "sparse density on the swim up" comment.  The word "ocele" is unknown as well.....if they meant "varicocele", that is talking about the veins that drain the testicles....  Lost on that one.  Sorry.

Hugs,

Jen

Hi Jen-

The ocele reference was indeed a reference to a varicocele. The doctor I got sent to for an inspection after this report was made thought there was one there.

Thanks for the info - i'm curious about what caused me to be TG, although i'm not consumed about it. I was wondering what this writeup meant, and whether it might be consistent with things that were reported earlier in this thread. I guess i wasn't shooting as many blanks as I thought I was. Of course it doesn't matter now because I have disabled everything down there with hormones  :laugh:

Right now the theory about me is DES as my mom said they gave her a lot of hormone stuff when she was pregnant but I'm not 100% sure. For me though it matters less and less as every day I feminize more and more. What's kind of reassuring is my brother said he knew I was different growing up but couldn't exactly pin it down.

I too had varicocelle and low motility plus the morphology wasn't all that good. We had tons of help that cost a lot of money, something like over 100k in treatments over 5 cycles of IVF, mostly paid out of pocket as insurance would cover very little.

Eva,

I mentioned this to my therapist, as a reason why I might be transgender.  She replied that it's basically irrelevant and we shouldn't question why, just because we are is sufficient.  If you were really male why would you question it?  You wouldn't.  We are female, in spite of some of our exterior detailing.  To quote a bad Jenifer Aniston movie title "Just Go With It"! 
Hugs

-Alana

Quote from: Alana_Jane on February 15, 2015, 04:45:05 PM
Eva,

I mentioned this to my therapist, as a reason why I might be transgender.  She replied that it's basically irrelevant and we shouldn't question why, just because we are is sufficient.  If you were really male why would you question it?  You wouldn't.  We are female, in spite of some of our exterior detailing.  To quote a bad Jenifer Aniston movie title "Just Go With It"! 
Hugs

-Alana

Hi Alana-

I'm really not obsessing over why this happened; it happened and there isn't anything I can do about it so i'm just trying to move forward in my life and not worry about it. My therapist gave me the same advice as yours did.

Still, that doesn't mean that I don't ever think about it so I try to keep up with the latest news and discoveries about our condition to satisfy my own curiosity. I was born in 1962, my mom had a difficult time carrying me to term, and I have many of the symptoms of being exposed to DES - but my mom says she didn't take it which kind of leaves me a bit puzzled. She would have been a prime candidate for DES and I was born in the era where it was heavily used. She could have taken vitamins or something else with DES in it but who knows. Those records are all long gone by now.

I happened to run across this old report and thought I'd put it out here and see if anyone could make sense of it, mainly to add to my understanding of what might have happened when I was in the womb, and since there had been some discussion of this topic earlier in the thread.

Quote from: GothFriendly on February 09, 2015, 11:59:49 PM
Hello, what was the exact cut off for use of DES? I was born October 72. I have rather wide hips for a male, small wrists, can double cross my legs, and my ring and index finger are the exact same length.

Just for interests sake, I have similar features a, was born in August 75 and know my mum didn't take DES..

ImagineKate:

Quote
Right now the theory about me is DES as my mom said they gave her a lot of hormone stuff when she was pregnant but I'm not 100% sure. For me though it matters less and less as every day I feminize more and more. What's kind of reassuring is my brother said he knew I was different growing up but couldn't exactly pin it down.

It made a big difference to me also, just to know that there's a simple explanation for why I'm the way that I am, and that it's not anything I've done, but just because an unfortunate set of circumstances led to me being exposed to artificial female hormones while I was still in my mother's womb.

Even if the hormone in your case weren't DES, then it's quite likely that it's the cause of your female gender identity. As I've been trying to tell people, if one of these female hormone derivatives can cause a whole bunch of biologically male people to end up with female brains without people realising what's happened, then it's highly likely that others are doing the same thing too.

Alana_Jane:

Quote
I mentioned this to my therapist, as a reason why I might be transgender.  She replied that it's basically irrelevant and we shouldn't question why, just because we are is sufficient.

Eva Marie:

Quote
My therapist gave me the same advice as yours did.

This is quite troubling really. Surely, as health professionals, gender therapists have a duty of care to take note of and duly report to the appropriate authorities, any medication side effects that their patients experience (especially one as serious as ending up trans, with its high incidence of comorbidities and high suicide rate). Yet this doesn't appear to be happening. Why not?

I mentioned DES as a possibility the first time I met my therapist (still not sure if it applies to me). She started to tear up, then told me she had been counselling one if the women in the original lawsuit. She said she was sorry but hadn't even considered how DES would have affected male babies.

I really don't know, I've not asked my mother.  It's not certain that she did or didn't.  That said my therapists point, is that I shouldn't question that I'm female anymore than she would.  I guess that our generation tends to self question on this point a little too much.  In this era, in contrast to ours, pretty much almost all children know and are allowed to be which gender they want to. 

-Alana

Quote from: kelly_aus on February 15, 2015, 05:56:29 PM
Just for interests sake, I have similar features, was born in August 75 and know my mum didn't take DES..

That actually supports one of the points I've been trying to make, that far more of us have signs of eunuchoidism than is the case for the cis male population. Eunuchoidism is the result of chronic below normal male testosterone production, and is something that's often associated with intersex conditions. If there are physical differences between us and cis males even prior to us starting on HRT, then it shows that (even though the psychological effects are what gets people's attention), transness isn't actually a psychological disorder at all, but is the result of something that's happened to us to disrupt our normal male development.

For a fair number of us in the over 40 age bracket, that "something" appears to have been DES, however the other point I've been trying to make is that ANY testosterone-suppressing drug or chemical is likely to be capable of doing the same thing, if administered during a pregnancy when the unborn baby happens to be male. That's likely to include progestins (which are potent testosterone suppressants in adult men), as well as corticosteroids in higher doses, and maybe even non-hormonal drugs that suppress testosterone in adult men, such as opiates and anticonvulsants. There are heaps of medicines  that are capable of suppressing testosterone in adult males, that are (or potentially could be) used in pregnant women, and I think (along with the fact that so many have already been exposed and potentially affected), the upheaval to current medical practice that would be required if the problem were acknowledged, is probably a big part of the reason why nobody wants to admit to it.

In 1847, Dr Ignaz Semmelweiss discovered that, by washing his hands in an antiseptic solution in between visiting each patient, he was able to drastically reduce the death toll from infections among mothers giving birth at his hospital. However, practicing cleanliness would have meant a radical departure from how doctors at the time worked, and they rejected his discovery on the grounds that "a gentleman's hands couldn't carry disease". Semmelweiss was ignored, ridiculed, and ended up being committed to a lunatic asylum where he died. It wasn't until decades later that Joseph Lister made a similar discovery, and this time was more successful in persuading the medical profession that practicing hygiene improved patient survival rates. In the interim, thousands of women had died needlessly from infections carried by the doctors attending them. Doctors are absolutely capable of carrying on for a long time with a practice that is harming and killing large numbers of their patients, purely for the sake of their own convenience. Perhaps this is one instance where they need a bit of a nudge from outside their profession to encourage them to do the right thing!

Quote from: HughE on February 17, 2015, 05:21:26 PM
That actually supports one of the points I've been trying to make, that far more of us have signs of eunuchoidism than is the case for the cis male population. Eunuchoidism is the result of chronic below normal male testosterone production, and is something that's often associated with intersex conditions. If there are physical differences between us and cis males even prior to us starting on HRT, then it shows that (even though the psychological effects are what gets people's attention), transness isn't actually a psychological disorder at all, but is the result of something that's happened to us to disrupt our normal male development.

Due to the somewhat odd nature of my family, I know my mum didn't actually take anything - not even 'vitamins'.. I also had a 'normal' T level at 12/13 when I had some surgery done - hydrocele repair.

  I found the mention of progressive illness interesting.  From mid-puberty onward for about twenty years I slowly but surely felt worse and worse.  My nerves were always running way-high almost like a mild electric current flowing through my body, I was getting chronically tired and I was experiencing nausea almost every morning which often was enough that I wouldn't eat breakfast.  My mind also felt like it was racing and couldn't slow down (it's really hard to describe the feeling - almost like a pressure squeezing my skull).  HRT virtually eliminated all this in short order.  I can't be certain if T, E or both levels were responsible, if I reacted badly to T whether high or not, or if I was missing E.  I started anti-androgen first alone and felt immediately better though and then estrogen more than cleared my crushing depression.  The only way I can describe my experience is it felt like my entire system was slowly poisoning itself and the only thing that fixed it was completely reversing the hormone balance.  I started HRT at age 36 and I'm now nearly 38.  I can't bear to think how I would have felt now if I'd continued life without it.

  I don't think I'll ever be able to prove anything I might have been exposed to during my mother's pregnancy in 1976-77.  I'd certainly much rather be able to state unequivocally that I suffered from a birth defect though than have people think its all in my head.  I don't understand why ->-bleeped-<- is still often looked at as some sort of personal fantasy or delusion.  I was physically sick from my condition and needed relief from that far more than I needed transition.  I was so sick that alone it was enough to put me on the edge of suicidal.  It seems that some people have felt things like me to a lesser extent but that overall the extent of my misery was unusual.  I can say without any doubt that HRT cured everything that was wrong with me.  It's very likely that whatever is abnormal about my mind and body goes all the way back to fetal development.

  I'm curious as to what other meds and treatments might have been in use in Canada through 1977 since there was mention made of other things.  Are there any reliable statistics for how many transpeople were the result of completely drug-free births?

Quote from: kelly_aus on February 18, 2015, 04:05:49 PM
Due to the somewhat odd nature of my family, I know my mum didn't actually take anything - not even 'vitamins'.. I also had a 'normal' T level at 12/13 when I had some surgery done - hydrocele repair.

No one's claiming that all cases of transness are due to drugs like DES, just that exposure to external hormones looks like it's one of the things that can make it happen. Anything at all that lowers T production or blocks its effects in genetic males, or increases T production/mimics the effects of androgens in genetic females, could in principle lead to someone becoming trans, if it exerts its effects during the critical period for brain development (which, in humans, seems to be the second and third trimester of prenatal development). It's quite difficult to say unequivocally that you weren't exposed to DES though, as it saw a lot of use as a growth promoter in poultry and cattle, and there are known to have been several large scale food contamination incidents in which thousands of people developed symptoms of estrogen exposure. There's also at least one incident where several batches of children's medicines were inadvertently contaminated with enough DES to cause breast development to occur.

It's quite interesting that you developed a hydrocele. The same happened to me too. It looks like it's one of the things that can occur when T is suppressed during your prenatal development (I think I posted a link a while ago to a paper showing that cryptorchidism, hydrocele and inguinal hernia are all defects that are thought to be linked to androgen suppression).

Violet Bloom:

QuoteI found the mention of progressive illness interesting.  From mid-puberty onward for about twenty years I slowly but surely felt worse and worse.  My nerves were always running way-high almost like a mild electric current flowing through my body, I was getting chronically tired and I was experiencing nausea almost every morning which often was enough that I wouldn't eat breakfast.  My mind also felt like it was racing and couldn't slow down (it's really hard to describe the feeling - almost like a pressure squeezing my skull).

In my case, I was fairly happy throughout my childhood, as soon as I hit puberty everything went horribly wrong. Although some of it was undoubtedly due to isolation and bullying, I think hormones probably played a part too. I'd go through cycles of being energized to an almost manic degree through to being deeply depressed. I used to eat like a horse without putting any weight on either. Then, around the time I turned 30, my metabolism changed somehow. I started to put on weight, and also started growing hair on my chest and to become progressively more male-looking (up until then I'd only had vellus body hair and was very androgynous-looking). Psychologically I became a lot more stable too. I married, and settled down into a moderately successful career in computing (although I never felt very happy with life, and had a nagging feeling of something being wrong, that I was somehow different from other people, that never entirely went away).

Then, shortly after my 43rd birthday, something changed again. I had a couple of weeks during which I felt very horny, and then my sex drive vanished (almost literally overnight), and I began to develop most of the symptoms of acute hypogonadism (e.g. as described on this page: http://www.griffinmedical.com/male_hormone_modulation_therapy.html). That page is about developing low T as a part of the normal ageing process, although in my case it was far from normal, being a very abrupt change rather than a gradual one.

That's how things stayed until 2011, when I found out about DES and realised that I had symptoms of hypogonadism, and started on the HRT that I'm currently taking. So in my case it was more like a series of quite abrupt stepwise changes rather than a gradual downwards progression. I actually felt reasonably well healthwise (apart from never being physically very strong) up until the age of 43, and since starting HRT I've again been feeling fairly well most of the time.

Some other meds that are likely to have T-suppressing effects and are commonly used in problem pregnancies are: hydroxyprogesterone caproate (a progestin), and corticosteroids (eg prednisone, dexamethasone etc).

I'd likewise be interested to know whether there are any stats for the percentage of trans folks born following drug free pregnancies, vs ones where medical treatment had to be administered.

Quote from: kelly_aus on February 15, 2015, 05:56:29 PM
Just for interests sake, I have similar features a, was born in August 75 and know my mum didn't take DES..

I was born in '73. 5'10", wrists and ankles are considered medium for a female my height. Right now, never on hrt, 36-30-40. (Pokey butt, not as wide as I would like) Female carrying angle. Index and ring finger same lengths. I knew I wasn't quite a normal boy as early as I can remember. Odd thing is my mom just told me tonight that she had some type of hormone injections every two weeks for pretty much her whole pregnancies with me and my sister. My sister has had extremely rough periods and is unable to have children. Even crazier is that my grandmother took hormones during her pregnancy as well. My mom was thought to have been unable to have children either so she called me a miracle.

Never really going know for sure I suppose. I just hope to wake up breathing each day and that things never get to be unbearable.

I know my Mum had problems with conceiving and was given 'hormone treatments' back in the 1950s.  Ever since I started living as myself I've always wondered if that was why I was TG.  In her 70s after I came out Mum would sometimes get quite tearful and upset that she'd 'ruined my life' somehow by having those treatments.  I used to tell her that I was glad to be here rather than not and that I was happy with my new life.

As a child I did have some intersex issues that were 'fixed' with surgery when I was 14.  I can remember having sore nipples too, but they went away after I was 'fixed'.  I was tall for my age (runs in the family), but very much a slow developer and child-like in my behaviour. I hated sports, team sports in particular, but later became a good distance runner.  My Dad was a good man, but being constantly told I was a 'sissy' or that people would think I was mentally deficient because of the games or toys I wanted to play with was really hurtful.

Quote from: ToniR on May 02, 2015, 11:12:11 PM
I was born in '73. 5'10", wrists and ankles are considered medium for a female my height. Right now, never on hrt, 36-30-40. (Pokey butt, not as wide as I would like) Female carrying angle. Index and ring finger same lengths. I knew I wasn't quite a normal boy as early as I can remember. Odd thing is my mom just told me tonight that she had some type of hormone injections every two weeks for pretty much her whole pregnancies with me and my sister. My sister has had extremely rough periods and is unable to have children. Even crazier is that my grandmother took hormones during her pregnancy as well. My mom was thought to have been unable to have children either so she called me a miracle.

I've read mum's medical records of her pregnancy, she was not prescribed anything, nor did she take any OTC meds - except for a small glass of Guinness to combat morning sickness, as recommended by her doctor.

Quote from: Lady Smith on May 02, 2015, 11:47:39 PM
I know my Mum had problems with conceiving and was given 'hormone treatments' back in the 1950s.  Ever since I started living as myself I've always wondered if that was why I was TG.  In her 70s after I came out Mum would sometimes get quite tearful and upset that she'd 'ruined my life' somehow by having those treatments.  I used to tell her that I was glad to be here rather than not and that I was happy with my new life.

As a child I did have some intersex issues that were 'fixed' with surgery when I was 14.  I can remember having sore nipples too, but they went away after I was 'fixed'.  I was tall for my age (runs in the family), but very much a slow developer and child-like in my behaviour. I hated sports, team sports in particular, but later became a good distance runner.  My Dad was a good man, but being constantly told I was a 'sissy' or that people would think I was mentally deficient because of the games or toys I wanted to play with was really hurtful.

I've just been doing some further reading on DES and I'm not sure what I'm feeling right now.  All of a sudden I've had the hunches I've had for so long about my past and childhood confirmed and I don't know whether to cry or to get angry or what.  All those crap years of being picked on and bullied at school, being belittled and disapproved of by my own father.  All that terrible confusion over why I didn't feel like other boys did or even that I could identify with other boys.
It wasn't a genetic accident that led to me having scary and painful surgery that nobody ever really explained to me properly when I was 14.  It was all down to a medical treatment that Mum accepted in good faith.  And no I'm not angry at Mum, - the truth is I don't know who I should be angry at.

Yes I'm not sure if I'm mad or just upset. Basically it was either not being born or being born having been subjected to meds that may or may not have caused me to have the issues and feelings I've dealt with all my life. I think I'd rather just not know.

Quote from: ToniR on May 02, 2015, 11:12:11 PM
I was born in '73. 5'10", wrists and ankles are considered medium for a female my height. Right now, never on hrt, 36-30-40. (Pokey butt, not as wide as I would like) Female carrying angle. Index and ring finger same lengths. I knew I wasn't quite a normal boy as early as I can remember. Odd thing is my mom just told me tonight that she had some type of hormone injections every two weeks for pretty much her whole pregnancies with me and my sister. My sister has had extremely rough periods and is unable to have children. Even crazier is that my grandmother took hormones during her pregnancy as well. My mom was thought to have been unable to have children either so she called me a miracle.

From the sounds of it, your grandmother may well have been given DES, which would mean your mother is a DES daughter. I've been told that, while the majority of DES grandchildren are fine, there are sometimes "third generation" effects seen in DES grandchildren, and that can include gender identity problems as well as some of the same intersex-related abnormalities that were associated with being directly exposed to DES (such as hypospadias). So that's one possible explanation for you being trans. 

However, the fact that your mother was given injections throughout the pregnancy means that you're almost certainly hormone exposed yourself - probably not to DES though. DES was sometimes given by injection, but much more usually as tablets. My guess is that, rather than DES,  the drug your mother was given is much more likely to have been another type of artificial female hormone, a progestin called hydroxyprogesterone caproate. My understanding is that hydroxyprogesterone caproate is more usually given as weekly injections, however it has quite a long biological half life (around 15 days), so it can also be given fortnightly. DES has a much shorter biological half life (around 5 days I think), so if it were DES, your mother would have needed injections a couple of times a week.

From what I've read about it, hydroxyprogesterone caproate should be quite effective at suppressing testosterone production, and should therefore be capable of causing female brain development in biological males. So that, I think, is the more likely explanation for you being trans.

Sorry to hear about your sister. Aside from the trans thing, another problem that seems to occur very commonly as a result of these hormone exposures is that they damage your endocrine system. That's probably what's happened to your sister.

It appears that you have really done your homework I can totally appreciate that. I have tried to figure out what it was my mom was given and I thank you because I haven't had any luck. This is really a lot to process.

First a thanks to Hugh for his constant work and effort on this subject.


I am 100% certain that I was DES exposed (as my mother talked informed me @ 18 or so and was quite strong about educating me to that fact).

Understand this has been one of the biggest AH HA's of my life.  Though at the end, I still have to deal with being me and what that all means (my privilege BTW).

Thanks

Tawni!

i was exposed to something, but my mom doesnt have those medical records anymore, theyve been long lost.

when she was ~4months pregnant with me she had severe bacterial pneumonia with a 105+ temp for almost a week before my grandparents took her to the doctor, and they had to put her on a ton of medication, and did something to try to save the pregnancy. penicillin and something else.  turns out her and i were alergic to penicillin and they had to give us a 3rd medication because of it.  no idea what the other 2 i was exposed to in there were but the temperatures were probably plenty enough to fry some things.

i was most likely going to be born brain dead is what the doctors were telling her.   thank god im not.

Quote from: Mai on June 23, 2015, 10:52:55 PM
i was exposed to something, but my mom doesnt have those medical records anymore, theyve been long lost.

when she was ~4months pregnant with me she had severe bacterial pneumonia with a 105+ temp for almost a week before my grandparents took her to the doctor, and they had to put her on a ton of medication, and did something to try to save the pregnancy. penicillin and something else.  turns out her and i were alergic to penicillin and they had to give us a 3rd medication because of it.  no idea what the other 2 i was exposed to in there were but the temperatures were probably plenty enough to fry some things.

i was most likely going to be born brain dead is what the doctors were telling her.   thank god im not.

Prior to about 1960, DES was the sole hormone used for miscarriage prevention. From the 1960s onwards, progestins were used too, and from the early 1970s, corticosteroids started to be used in problem pregnancies as well (to promote lung maturation if it was thought the mother was in imminent danger of giving birth prematurely). DES had largely been withdrawn from use as a miscarriage treatment by the early 1980s, while progestins and corticosteroids are still in use even now.

What all 3 types of hormone have in common is that they suppress testosterone production. DES and progestins completely suppress it, while corticosteroids can reduce it by up to 60 percent in animal experiments (whether that's enough to produce a female gender identity I don't know).

DES was usually given as a tablet, as were the early progestins. The currently used generation of progestins are given as an intramuscular injection, usually weekly. I'm not sure how corticosteroids are typically administered in the pregnancies where they're used.

my mom took psychiatric medication while she was pregnant with me, she was going to stop it through her pregnancy but the doctor told her it was fine and wouldnt effect me.....thats always bothered me

Quote from: AleksiJason on June 25, 2015, 02:04:32 PM
my mom took psychiatric medication while she was pregnant with me, she was going to stop it through her pregnancy but the doctor told her it was fine and wouldnt effect me.....thats always bothered me

I don't know about psychiatric drugs in general, but anticonvulsants (the drugs used to treat epilepsy) have been linked with gender dysphoria. This is thought to be because they interfere with hormone metabolism in the developing fetus.

http://www.ncbi.nlm.nih.gov/pubmed/10097803
"Prenatal exposure to anticonvulsants and psychosexual development"

QuoteAnimal studies have shown that prenatal exposure to the anticonvulsant drugs phenobarbital and phenytoin alters steroid hormone levels which consequently leads to disturbed sexual differentiation. In this study, possible sequelae of prenatal exposure to these anticonvulsants on gender development in humans were investigated. A follow-up study was carried out in phenobarbital- and phenytoin-exposed subjects and control subjects matched for age, sex, and the mothers' ages...As a group, exposed and control subjects did not differ with respect to gender role behavior, although higher numbers of prenatally anticonvulsant-exposed subjects reported current or past cross-gender behavior and/or gender dysphoria. Three prenatally anticonvulsant-exposed subjects were transsexuals and had undergone sex reassignment surgery, a remarkably high rate given the rarity of transsexualism. In addition, two exposed males had exclusively homosexual experiences, whereas none of the control males reported exclusive homosexual behavior. The groups did not differ in attainment of pubertal psychosexual milestones.

Quote from: Opaque on September 20, 2010, 01:39:11 AM
Hello everyone.  This is Opaque and it is my first time posting to this group.  I am in my 6th day of HRT and would appreciate some honest, upfront communication.  Specifically, I have read several of the posts from other members on various transgendered topics, but I have not seen anything mentioned or related to DES which is commonly referred to as "Diethylstilbestrol".  This estrogen is a synthetic nonsteroidal estrogen that was first synthesized in 1938, and given to pregnant women to hypothetically reduce the risk of pregnancy complications and losses.  Well...my mother took DES when she was pregnant with me back in the 1960's.  I have read numerous articles that discuss DES sons and prenatal exposure to DES.  There is a high prevalence of individuals with confirmed or suspected prenatal DES exposure who self-identify as male-to-female transsexual or transgender, as well as some who have reported experiencing difficulties with gender dysphoria.  IS THERE ANYBODY OUT THERE THAT RELATES TO THIS???  Thanks.

Hi Opaque,
Great topic!!!
I was also impacted by DES. My experience is this...My mom was given huge doses of it while pregnant with my oldest sister...huge, massive doses in order to prevent miscarriage/premature birth. In my research, I discovered that the drug stays in the mother's fatty tissues for a lifetime but gets re-released into her bloodstream when she's under tremendous stress.
My sister--the one the DES was for--she was born sterile with various female reproductive issues. My second-oldest sister wasn't affected in any measurable way--despite having an early hysterectomy--but my mom's pregnancy with her was unremarkable and no notable stressors.
When my mom was pregnant with me, they were told they were going to have a boy as soon as the sonogram could detect--but they weren't sure as the genitalia wasn't formed enough and they were kinda taking a guess. During the pregnancy, my mom went through some seriously bad family crisises, and I think the DES in her system affected me. I was supposed to be born in one month, but I wound up being a few weeks late into the next month.
My hypothesis is that my body/mind were wired for female but the DES caused disruption of development and initiated the development of certain boy parts. However, when I went into a major university clinic hospital for eval prior to beginning HRT/SRS, they at first throught Kleinfelter's syndrome but being aware of the DES exposure, thought that the drug was the cause of my mind/body disconnect. Further, detailed internal studies showed remnants of ovaries that were shriveled and useless. The gender doctor described my case as intersex, but being my parents were struggling enough with the situation and in order to expedite my surgery timetable, he just listed me as transsexual and started the usual protocol.
I truly believe that DES has been instrumental in causing my developmental issues. I have two older and 1 younger brothers, none of whom show any signs of physical damage from the DES exposure because our mom's pregnancies with them was quiet and non-stressful(or at least as un-stressfull as pregnancy can be lol)

I'm not sure whether everyone will able to access this google books preview, but hopefully it works. It's a preview of "The Greatest Experiment Ever Performed on Women" by Barbara Seaman.

https://books.google.co.uk/books?id=HHm1qkcgFSUC&pg=PA37&lpg=PA37&dq=Dr.+Karl+John+Karnaky&source=bl&ots=ZoAtDy84FQ&sig=KQvfmqX6HwxAOe0a6aKaCcjtIRc&hl=en&sa=X&ved=0CCoQ6AEwAWoVChMI0JKF2-P5xgIVgrgUCh1vCA0H#v=onepage&q=Dr.%20Karl%20John%20Karnaky&f=false (https://books.google.co.uk/books?id=HHm1qkcgFSUC&pg=PA37&lpg=PA37&dq=Dr.+Karl+John+Karnaky&source=bl&ots=ZoAtDy84FQ&sig=KQvfmqX6HwxAOe0a6aKaCcjtIRc&hl=en&sa=X&ved=0CCoQ6AEwAWoVChMI0JKF2-P5xgIVgrgUCh1vCA0H#v=onepage&q=Dr.%20Karl%20John%20Karnaky&f=false)

The search I used drops you near the end of the chapter, but if you page back through it, it provides some interesting new insights into the story of DES.

Nazi scientists working for German pharmaceutical giant Schering (now Bayer I think) had developed and patented an artificial estrogen, ethinyl estradiol, and it looked like the Nazi regime was going to profit handsomely from the discovery (at the expense of women needing estrogen replacement). Accordingly, British chemists collaborated on developing an easily manufactured nonsteroidal substitute for ethinyl estradiol, and DES was the end result. By not patenting it, they made it freely available to all, and the Nazis' dastardly plan to corner the world estrogen market with ethinyl estradiol was foiled.

DES was never intended to be used in the reckless way that it ultimately was, and Dodds and his fellow scientists who made the discovery, had considerable misgivings about its potential to cause cancer and other adverse effects from the beginning. Unfortunately, US pharmaceutical companies seized on this inexpensive yet exceedingly potent estrogen, and started marketing it for all sorts of highly inappropriate purposes (including miscarriage prevention).

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FGEPW%2520DES%2520experimental%2520intersexuality%2520p38_zpspvxa6foy.png%3Ft%3D1438250839&hash=c233b653d9ac76b83f3a81577838d36df4dfcb37)

This is an excerpt from p38-39 of the preview, and shows how it was already known within a couple of years of its discovery, that DES causes intersexuality in male animals exposed to it in the womb. Astoundingly, despite that knowledge, DES was subsequently promoted as a treatment for preventing miscarriages, and used in somewhere in the region of 10 million pregnancies worldwide. You do have to wonder what was going on behind the scenes at the FDA. How did DES ever gain approval for use during pregnancy, considering that it was known almost from day one that it causes intersexed development in male lab animals? What did they expect to happen when it was given to human beings?

  OUCH! One passage in that says: However, her [Dr. Olive Smith] husband says. "you can do all kinds of things to rats and mice by giving them overdoses." This scientific shrug of the shoulders cannot reassure the maimed.  No it doesn't. These women were given overdoses as seen in the table in response #104 on this thread. My mom and myself were two of the 'rats.'

Joelene

Does anyone else ever want to dig up someone's remains, reanimate them and then, well, violence of your choice?

It was all about money then and it's all about confuse the issue and deny now. This drug makes many lives very difficult and outright kills others. 

But, by denying it now, they make it more likely that there are other drugs out there today doing the same thing.

Jen

Lies and greed from big corporations, - why should we be surprised?  ::)

When I found out about DES and that I was a DES child I was angry enough to want to dig somebody up and kill them again, but now for my own sanity I've decided to let that anger go.  I'm 61, - do I want to go about being angry for the rest of my life?  No I don't, life is far too short for that.  I'd much rather find contentment with what I already have and get on with it.

I've seen enough so that, as far as I'm concerned, there's a mountain of evidence showing that DES induces female brain development in biologically male fetuses, and, in human beings, the way this often manifests itself later in life is as MTF ->-bleeped-<-.

If one medically prescribed hormone can do this to large numbers of people and the whole thing pass completely unnoticed as far as the public are concerned, then who's to say other hormones aren't doing the same thing? Hardly anyone knows what medicines they were exposed to before birth, and, by the time you've reached adulthood,  it's usually difficult or impossible to establish whether exposure took place (since medical records often no longer exist, and people's memories of what medicines were given during a pregnancy decades earlier tend to be quite unreliable). You're actually more likely to be able to find out with DES than with other hormones due to the fact that, during the 1980s, there was quite a lot of publicity about DES causing cancer, and a lot of doctors did the right thing and informed their patients who'd been given it of what happened.

So, IMO there's good reason for thinking that there could be medical hormones still in use that are continuing to cause ->-bleeped-<-. Even if by some amazing stroke of luck there aren't, the fact that ->-bleeped-<- is a kind of intersex condition and that, for many of us in the over 40s age group, it was caused by a medicine given to our mothers while they were pregnant, is something that the public should know about. I'm sure it would go a long way towards helping us gain acceptance from our families and the public at large, and I think it makes a strong case for us being given assistance with things like hormones and surgery too.

Good grief is this thread still rumbling on?

I was the second person to post on this back in 2007/8 - so I'm on record as being affected.

In my case, I suspect that my mother was well aware of what had been done, because a.) she had some medical training and interest herself (she produced medical radio programmes) and b.) she had a private obstetrician and c.) in the late 1950's evidence was already beginning to accumulate - which probably explains whu I was monitored pretty carefully for those days.

However in my case there was a matching positive side because of course that knowledge may have contibuted to the unusual degree of gender expression lattitude I was afforded when growing up.

I cant be bothered to get angry - this chemical changed my biological destiny yes - but it has given me a good and interesting life, and I cannot regret that. I have symapthy of course with those who suffered for being different, but on the whole I did not, and so I cannot regret an experience and journey which has on the whole given me more joy than sorrow.

Quote from: HughE on August 01, 2015, 09:17:55 AM
I've seen enough so that, as far as I'm concerned, there's a mountain of evidence showing that DES induces female brain development in biologically male fetuses, and, in human beings, the way this often manifests itself later in life is as MTF ->-bleeped-<-.

If one medically prescribed hormone can do this to large numbers of people and the whole thing pass completely unnoticed as far as the public are concerned, then who's to say other hormones aren't doing the same thing? Hardly anyone knows what medicines they were exposed to before birth, and, by the time you've reached adulthood,  it's usually difficult or impossible to establish whether exposure took place (since medical records often no longer exist, and people's memories of what medicines were given during a pregnancy decades earlier tend to be quite unreliable). You're actually more likely to be able to find out with DES than with other hormones due to the fact that, during the 1980s, there was quite a lot of publicity about DES causing cancer, and a lot of doctors did the right thing and informed their patients who'd been given it of what happened.

So, IMO there's good reason for thinking that there could be medical hormones still in use that are continuing to cause ->-bleeped-<-. Even if by some amazing stroke of luck there aren't, the fact that ->-bleeped-<- is a kind of intersex condition and that, for many of us in the over 40s age group, it was caused by a medicine given to our mothers while they were pregnant, is something that the public should know about. I'm sure it would go a long way towards helping us gain acceptance from our families and the public at large, and I think it makes a strong case for us being given assistance with things like hormones and surgery too.

My Mum often said she was worried that the hormone therapy she was on in the 1950s had affected my older sister and I.  At the time I didn't really know anything about DES, but once I did it became all too plain to me that yes indeed my sister and I had been profoundly affected.  I haven't mentioned anything about this to my sister because she has managed to make a happy and stable life for herself for some years now and I don't think she needs to suffer the same distress and upset that I've recently gone through these past months.
I worry a lot that my demi-girl identifying daughter has intersex characteristics because of my exposure to DES.  She tells me I shouldn't feel upset and guilty about it, but I can't help worrying because she's my child and I love her.

As to the question of family acceptance too much water has gone under the bridge for all the hate speech and insults cast at my daughter and I to be easily undone.  If I could even manage to get certain members of my family to actually listen to me and give me a fair hearing I very much doubt that it would change anything.  We'd still be the embarrassing freaks whom they don't want anybody to know about.

Having seen how slowly the government in my country has dragged their heels over compensation and assistance to other groups in NZ society who have suffered health problems from exposure to chemicals or radiation I wouldn't want to hold my breath waiting for any kind of assistance.  At least I live in a country with a public health system so I can get HRT, medical treatment and any necessary follow up tests at little or no cost.  Actual humane and realistic assistance with SRS isn't likely to happen anytime soon going by some of the comments our prime minister and his cronies have made lately.  My daughter might see it happen when she's my age, but it won't be in my lifetime.

I may as well add my name to this thread.   DES was probably the reason I was born at all, since my mother had miscarried frequently prior.   In that light, I'm okay with it.   

And, I've dealt with the results of DES exposure as well as possible.   I do find my body frustratingly immune to hormones.   I never masculinized before (small stature, no body hair, no beard), and haven't really feminized since starting HRT or after SRS.   And, mentally, I find myself in between genders as well.   

So, life goes on, it's all water under the dam.   I would be interested if the medical industry ever wakes up to what happened.

^^THIS^^

If DES is the reason I'm here to type this today, then I can't completely vilify it.  I'd rather have a moderately sucky life than no life at all.

the time frame is right , but I have no idea if my mother had it. It really doesn't matter. If she did it would explain a lot because I became aware of myself at 4 years old so nothing after birth caused it. It would be interesting to know , but I really like who I am so it really doesn''t matter if it was extra E or something in my genes.  The more I transition the more I'm happy for who I am . I wouldn't change a thing even if it turned out I was a lab rat.

Quote from: Lady Smith on August 01, 2015, 11:08:24 AM
My daughter might see it happen when she's my age, but it won't be in my lifetime.

Quote from: Megan Rose on August 01, 2015, 12:18:16 PM

So, life goes on, it's all water under the dam.   I would be interested if the medical industry ever wakes up to what happened.

There are more and more people who are becoming aware.

Just look back what has changed the last years, for example concerning lgbt issues.

Historically there were times when people were ready for more openness and some old resistances raised their head. They could not stand the test of time.

People are getting more and more aware, also within large groups. This is supposed to continue, imo possibly at an exponential rate.
Things like court rules for lgbt marriages people have also said would take some time.
Lets hope for positive surprises.

hugs

Quote from: Megan Rose on August 01, 2015, 12:18:16 PM
I may as well add my name to this thread.   DES was probably the reason I was born at all, since my mother had miscarried frequently prior.   In that light, I'm okay with it.   

Sorry to tell you this, but there was a large, case-controlled study carried out at the University of Chicago and published in 1953, which showed that DES is completely useless at preventing miscarriages. In fact, the DES group had a higher rate of miscarriages than the control group! Other studies later confirmed that result. That didn't stop the  pharma industry and the FDA though, they continued to promote DES for miscarriage prevention for almost a further 20 years.

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FDESplex%2520ad%25201957_zpsseipmnj9.jpg&hash=60535cadbc65d97a2444bf00492f6e763e20d86c)

(This advert appeared in 1957)

Quote from: HughE on July 31, 2015, 05:17:53 AM
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FGEPW%2520DES%2520experimental%2520intersexuality%2520p38_zpspvxa6foy.png%3Ft%3D1438250839&hash=c233b653d9ac76b83f3a81577838d36df4dfcb37)

This is an excerpt from p38-39 of the preview, and shows how it was already known within a couple of years of its discovery, that DES causes intersexuality in male animals exposed to it in the womb.

I've done a bit more investigation, and tracked down a total of 8 papers published by R.R. Greene and coauthors, between 1938 and 1942, 5 of which have "Experimental Intersexuality" in the title. I don't have institutional access so can only see the page 1 previews, but that's enough to gain a fair idea of what they were doing, and what results they were seeing. Here's one which pretty much sums it up:

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FExperimental%2520intersexuality%2520p1_zpsbblc2sbb.png&hash=9314b99bccd40f3a30f2dbd89cb7be79e4b48421)

Basically, external estrogens (estradiol esters and DES) administered during pregnancy caused male rat fetuses to develop as female, while external androgens (testosterone esters) caused female rat fetuses to develop as male.  This is something they demonstrated repeatedly in several different experiments involving thousands of rats. Considering how, at that time, hormones were still comparatively rare and expensive substances and not readily available, there can't have been many people doing that kind of research, and there's no way the pharma industry, the FDA, and DES pushers such as Dr Karnaky and George and Olive Smith can not have known about it. I find it absolutely astounding that they went ahead with DES (and later, andogenizing progestins) as miscarriage treatments regardless. As a result, millions of pregnant women have ended up being given high doses of hormones with estrogenic or androgenic properties.

Greene and his co-authors appear to have been spot on with their research too, since there's quite a few of us in this thread with first hand experience of the feminizing effects of prenatal estrogen exposure!

I have my suspicions, and no evidence, that whatever they replaced DES with is responsible for the continued rate of transgender births AND for the rate of autism spectrum disorders, leading to the correlation between the two conditions. Hey, one of my college friend's brothers is a medical researcher. Perhaps I should put a bug in his ear!

hmm makes me wonder,i read all of this thread and it makes want to ask my mom if she took anything when she was preg with me in 1965. ive always had a female body with one exception male genitals,i was always different from other boys,i liked being around girls,from 13-24 i could eat like a horse and not gain weight,i didnt reach my full hight til i was 16,didnt have facial hair til i started dry shaving,i do got big feet size 13 in men and womens shoe..the reason i shaved was wanting to try and look male,did not work like i thought it would,now i look like a woman with a mustache,or worse the bearded lady..lol. didnt have no prob fathering 3 kids though ..i was constantly bullied i didnt look like i could fight back,they learned looks were decieving,for i was bone strong,never massed muscle outside of growing breasts at 13 i was lucky they are small enough not to get noticed til i take my shirt off,always loved and still love skirts and dressess...alot of things to think on....

Quote from: Dee Marshall on August 06, 2015, 11:24:23 AM
I have my suspicions, and no evidence, that whatever they replaced DES with is responsible for the continued rate of transgender births AND for the rate of autism spectrum disorders, leading to the correlation between the two conditions. Hey, one of my college friend's brothers is a medical researcher. Perhaps I should put a bug in his ear!

This (and other branded variants of it) is basically what replaced DES:

http://www.makena.com/

Hydroxyprogesterone caproate is a progestin, the same class of hormones as medroxyprogesterone acetate (Provera). While hydroxyprogesterone caproate itself doesn't seem to normally be given to natal males, there are almost certainly some people on this site with personal experience of Provera. Provera is a potent testosterone suppressant that is often used as a chemical castration agent for sex offenders (it's actually not advisable to take it as part of trans HRT due to its link with severe depression and suicides, however there are some ignorant doctors who prescribe it regardless).

I don't know for certain that hydroxyprogesterone caproate is a testosterone suppressant too, but it seems highly likely that it is, since its wikipedia page says it has similar effects to Provera, and progestins in general seem to be highly effective at suppressing testosterone in adult men (in addition to being antiandrogens, both spiro and androcur are progestins, and this probably contributes to their testosterone suppressing abilities).

There's also the fact that there's a contraceptive injection called Perlutal, which is very popular among trans women in Latin American countries. It contains a progestin called dihydroxyprogesterone acetophenide, which is chemically quite similar to hydroxyprogesterone caproate, and you'd expect them to have quite similar pharmacological effects. Although I can't talk about the actual milligram amounts used, the dose of Perlutal that produces testosterone suppression and feminization in trans women is several times less than the dose of Makena that's typically used for preventing preterm births. That's why I think there's a very real likelihood that Makena (and other variants of hydroxyprogesterone caproate) could be continuing to cause ->-bleeped-<-.

There's probably other medicines too, for instance it's quite likely that birth control pills or injections can do it if they're used during pregnancy.

Well there are other chemicals said to be not unproblematic...
some softeners in plastics for example...
many people use glass containers therefore for example...

hugs

I know for a fact that my mother was given DES in 1951 during her pregnancy with me.
I found this thread fascinating. Thanks to you all for sharing this information.

Quote from: Laura_7 on August 08, 2015, 09:26:08 AM
Well there are other chemicals said to be not unproblematic...
some softeners in plastics for example...
many people use glass containers therefore for example...

hugs

One of the points I've been trying to make is that, here are people getting all wound up about weakly estrogenic environmental EDCs (BPA etc), and yet millions of women are putting powerful endocrine disrupting compounds into their bodies every day (in the form of pharmaceutical hormones), in doses that are more or less by definition high enough to have biological effects, without giving it a second thought. Perhaps environmental EDCs are contributing to the problem, but I'm sure that for most ordinary people (women especially), by far the largest source of exposure to manmade endocrine disrupting compounds is pharmaceutical hormones.

Presumably everyone's assuming that medicines prescribed by a doctor have been through rigorous safety testing and everything else, and must be OK. However, when you look into the history of how hormones were developed and turned into medicines, that's not what happened at all. With DES, doctors and the pharmaceutical industry adopted an amazingly gung ho approach, ignoring all the evidence of cancer and deformities that were coming out of the research on animals, and pressed ahead with trials on human beings. Once it had been trialled and appeared to work OK without causing too many immediately obvious problems, they put it into general use without further ado.

I'm sure much the same happened with birth control pills too. When you look at the hormone dosages in first generation birth control pills, they must have been causing quite a few fatalities from blood clots and cardiovascular disease. After the first decade of use, they completely reformulated birth control pills and made the dosages a lot smaller, presumably because the body bag count was so high. I found an article from the Sunday Times here in the UK, in which a reporter had discovered that most of the safety testing for the long term effects of contraceptive pill use had been faked. Why would the pharmaceutical industry need to do that I wonder?

So, one reason why I think the world needs to know about DES and how it can cause transsexuality, is that some of its effects may well apply to hormones that are currently being consumed by millions of women every day. Aside from that, there's the sheer injustice of what's happened to us and to transgender people in general.

Quote from: HughE on August 11, 2015, 10:01:35 AM
One of the points I've been trying to make is that, here are people getting all wound up about weakly estrogenic environmental EDCs (BPA etc), and yet millions of women are putting powerful endocrine disrupting compounds into their bodies every day (in the form of pharmaceutical hormones), in doses that are more or less by definition high enough to have biological effects, without giving it a second thought. Perhaps environmental EDCs are contributing to the problem, but I'm sure that for most ordinary people (women especially), by far the largest source of exposure to manmade endocrine disrupting compounds is pharmaceutical hormones.

Hi Hugh,

The thing about EDCs is they are everywhere.  They're in food cans, detergents, flame retardants, food, toys, cosmetics, and pesticides.  The list of current and past pesticides that are known EDCs is astonishingly long and that doesn't include the "inert" materials that go into the formulation. 

The thing is they can have cumulative/synergistic effects that no one has tested.  When DDT, an EDC, was thinning the shells of raptors, what was it doing to pregnant women.  They gassed streets regularly and very few took any precautions.

Another source would have been the vinyl hairspray of the 50s and 60s.  The companies that sold it quietly pulled it from the market before the public caught on, but hair salons of that time had terrible air quality.  If I remember correctly the air quality was an order of magnitude worse than what government regulators thought was safe in a factory environment.

These are just two examples there are many more.

I agree that the first birth control pills were much stronger when they first came out, and could have very easily had some effect.  But I do think the chemical industry has played quite a role in this too.

Take care,
Paige :)

Quote from: Paige on August 12, 2015, 07:44:34 PM
I agree that the first birth control pills were much stronger when they first came out, and could have very easily had some effect.  But I do think the chemical industry has played quite a role in this too.

I think you're probably right that chemicals are contributing to the problem. However, the thing about medicines is that they're more or less by definition being given in a dose big enough to have a biological effect, whereas with EDCs, the exposure (at least as far as human exposures are concerned) tends to be below the threshold for obvious biological effects. If the average person were being exposed to enough environmental EDCs to suppress testosterone production for instance, the average man in the street would become impotent, sterile, and start to develop all the symptoms of acute hypogonadism. It would be immediately obvious that a mass poisoning was taking place, and try as they might, corporate interests and corrupt government agencies wouldn't be able to keep it quiet. So we can be fairly sure that environmental EDCs aren't present at a high enough level in most people to cause significant testosterone suppression.

With pharmaceutical hormones it's different. Women naturally have high levels of female hormones in their body, so it takes a fairly high dose of estrogen or progestin on top to produce significant biological effects (especially pregnant women, whose hormone production is in overdrive). Males have much lower levels of estrogen and progesterone in their bodies, so much less artificial estrogen or progestin is needed to produce noticeable effects in men. With women's hormonal contraception, it seems that a dose high enough to work as a contraceptive in women is more or less inevitably going to be high enough to shut down testosterone production in males. That's certainly the case for Depo Provera (which has been used for chemical castration of sex offenders), however I think it's likely to apply to other injectible contraceptives and birth control pills too. Since the doses of estrogen (and more recently, progestin) are quite a bit higher in the hormone treatments used for preventing miscarriages and premature births, it's fairly inevitable that doctors are inadvertently creating biologically male people who've partly developed as female whenever they use these hormone treatments in pregnancies where the fetus is male.

We know for a fact that it happened with DES, however it's highly likely that progestins can do it too (and any form of hormonal contraception, if it's taken during pregnancy). Considering how many women take contraceptives and are given medical treatment involving hormones, that's why I think medicines are likely to be a more important cause of ->-bleeped-<- than environmental EDCs.

A few weeks ago I was chatting online with Caitlin McCarthy, the screenwriter who is currently trying to get Wonder Drug The Movie (a docudrama about DES) into production. She thinks a big part of the reason why the effects of DES on natal males have received so little attention, is because whenever the media have wanted to talk to DES exposed people, the only people they've been able to find have been DES mothers and daughters. She suggested setting up a register of natal males who were exposed to DES (I'm not sure that DES "sons" is an accurate description for the majority of us!), who are willing to speak to the media.

It seemed like quite a good idea. I originally approached DES Action USA to maintain the register, however they didn't appear to be very enthusiastic about doing so, and I've ended up getting another organization, DES Info (who have historically been a lot more trans friendly than DES Action), to do so instead.

If there's anyone reading this who has a history of DES exposure and would like to participate, please email DES Info at: DESInfo411@gmail.com , saying that you'd like to be included in the register and whether you want to remain anonymous. If you've already posted a story somewhere of how DES has impacted your life, it wouldn't hurt to include a copy of that as well. Obviously the more people we have on there who've ended up trans as a result of DES exposure, the harder it'll be for TPTB to deny the connection.

I don't know whether anything will come of it, but (especially now that Wonder Drug looks to be a lot closer to getting funding), hopefully an opportunity will arise for getting our side of the story into the news.


Thanks!

I know it's not quite what you're looking for, but as a different data point, my mother was a DES baby, and I'm here. Very little is known about the effects on the next generation, but there do seem to be further effects and mutations.

*
The  potential irony of the Diethylstilbestrol issue was on my mind when my first endocrinologist prescribed it to me during my early years on ERT (1979 - 1981).  I asked him about it; he told me it made no matter to me as an adult M-F since I was not getting pregnant.  This was before my exploratory (1982) that added new light to my new circumstance.

On the other hand, as an adoptee with no information about my biological family, I have no way knowing that I am or am not included in the issue as an inter-sex child of a mother who took DES.  I am not aware that any physician has tested me for DES exposure - whether as a child or since I began medical care for my transition and hereafter.  Perhaps that DES study contact can help that determination.

Thank you.

*

Is there a test to see if you are a DES son? I think I am, my mom had a miscarriage/still born before me (I was born in 1969) and it was commonly prescribed to prevent miscarriage. My mom is not on speaking terms with me so I can't ask her. A test would help.

Quote from: rachel.i.prince on August 31, 2015, 11:16:37 AM
Is there a test to see if you are a DES son? I think I am, my mom had a miscarriage/still born before me (I was born in 1969) and it was commonly prescribed to prevent miscarriage. My mom is not on speaking terms with me so I can't ask her. A test would help.

No known test is available. By records only. Ask a friendly aunt or other family member who knows your mom's medical history while she was carrying you. Mine by the clues my mom told me with the big one a few years after she died. She lost a daughter before I was born to adoption plus she had a history of anemia. My mom wanted her back as stated in a letter. My mom and I did discuss such hot topic things such as abortion, she will not discuss DES when it came out in the 1980's that it was causing fertility problems to those who were in the womb at the time of the dosing. A lot of lawsuits caused the closing of those records. My mom may have had a guilt feeling after I came out to her in 1977.

Joelene

My Mum always worried that the 'hormone therapy' she was given back in the 1950's had affected my sister and me.

Dr Scott Kerlin is expert on DES.

His research indicates that 1/3 of DES exposed males are transgender. If you consider how many of us are in denial, the real figure could be much higher.

Put his name in Google and you'll find reams of research.

http://www.desaction.org/documents/SCOTTKERLINRpt2005.pdf

I wonder, IF drugs with similer properties, were/are use for schizophrenia :(

A bit of digging, and I see that, schizophrenia is a possible side affect of being exsposed to DES infetus.

My mother, and my grandmother were both diagnosed with schizophrenia. And although my great grandmother had no psycotic illnessess, her pregnacey with my grandmother corolates to the time DES was still the go to mis carrage reducing treatment.

I have no information as to wether, my great grandmother had any miscarriges. But sighs....

I have been reading this thread and the more i read it seems me and my sister both was affected by this drug.  We always wondered why my sister would be around my dad more and i was around my mother.  Growing up my sister went hunting with dad, and all boy things with him.  I did some like fishing, but i never liked hunting. I seemed to always be around my mother doing things with her.  Now as i read this it seems me and her fit right in with this.  My mother and father has passed and so has my sister.  So there is no one to ask.  The doctor is long dead. If true it would answer a lot of questions.  My daughter and granddaughter has problems also, i am thinking their problems may come from this.  I am going to pass this along to them so they can ask their doctors if this could be the root or part of their problems. Bad thing with the small town we live in, the doctor that delivered me and my sister also delivered my daughter. 

I'm the fourth child of five, I was born in 1961. My mother went into labor with me at six months and was given something at the hospital to stop it. I was born six weeks later. I was six weeks premature, weighing four pounds even.

Quote from: Joelene9 on August 31, 2015, 03:53:49 PMNo known test is available. By records only.

What a pity there is no test.  I have often wondered if there was something like that in my past.  I never had the confidence nor a close enough relationship with my mother to ask.  And, as she is no longer alive, I have missed my chance.  Unless my older brother (who is gay) had that conversation with her, there is no one who would know.

Ultimately, it makes no difference.  What is, is.  Still it would be nice to understand it.

Quote from: RomeoEcho on August 29, 2015, 01:35:40 PM
I know it's not quite what you're looking for, but as a different data point, my mother was a DES baby, and I'm here. Very little is known about the effects on the next generation, but there do seem to be further effects and mutations.

I have heard that the natal male children of DES daughters (i.e. "DES grandsons") have a considerably higher than normal incidence of the same kinds of problems that were often seen in DES sons, hypospadias and undescended testes being two examples. Since both of those are markers for below normal testosterone during prenatal development, it stands to reason that some of these people would have had below normal male testosterone during the key period for brain development too, and ended up trans as a result.

The main reason I haven't talked about "3rd generation" effects is because I don't have any clear idea what could be causing them (whereas with direct DES exposure, considering the doses used, it's easy to see how it could suppress fetal testosterone production and cause fetal development during that part of the pregnancy to occur as female instead of male). All I know is that there does appear to be an unusually high incidence of DES-like symptoms in DES "grandsons" (who may now be living as granddaughters!). The other thing I've noticed myself from talking to DES daughters, is that a lot more of their kids appear to be autistic than is the case for the general population.

One theory I've heard is that DES exposure changes the epigenetic programming in a DES daughter's eggs. All the eggs a woman has as an adult, actually formed while she was still a fetus, during the first five months of her prenatal development (e.g. see: http://prenatalexposures.blogspot.co.uk/p/fetal-sperm-and-egg-overlooked-tissues.html ).

"Based on a survey of autism parents, we have found severity of neurodevelopmental symptoms to generally be more severe when the mother was exposed than if the father was exposed.  That may be due to the fact that maternal germ cell development remains relatively arrested as compared to the male germ line after birth."

The author of that blog, Jill Escher, was exposed to a cocktail of synthetic hormones during her prenatal development. She doesn't identify as trans, but gave birth to two children with autism. She thinks the hormones she was exposed to damaged her eggs, and that's what ultimately led to her children being born with autism.
http://prenatalexposures.blogspot.co.uk/2013/05/worse-than-thalidomide-consequences-of.html

As Jill's blog entry illustrates, although DES received virtually all of the publicity, doctors were actually handing out colossally high doses of several other manmade hormones at the same time, and the number of people exposed to these hormones could well exceed the numbers exposed to DES (and as I've mentioned previously in this thread, these other hormones could well be a cause of MTF transsexuality too, since  the entire progestin class of hormones are highly effective at suppressing testosterone production in adult men).

Quote from: HughE on September 02, 2015, 02:49:22 PM
I have heard that the natal male children of DES daughters (i.e. "DES grandsons") have a considerably higher than normal incidence of the same kinds of problems that were often seen in DES sons, hypospadias and undescended testes being two examples. Since both of those are markers for below normal testosterone during prenatal development, it stands to reason that some of these people would have had below normal male testosterone during the key period for brain development too, and ended up trans as a result.

The main reason I haven't talked about "3rd generation" effects is because I don't have any clear idea what could be causing them (whereas with direct DES exposure, considering the doses used, it's easy to see how it could suppress fetal testosterone production and cause fetal development during that part of the pregnancy to occur as female instead of male). All I know is that there does appear to be an unusually high incidence of DES-like symptoms in DES "grandsons" (who may now be living as granddaughters!). The other thing I've noticed myself from talking to DES daughters, is that a lot more of their kids appear to be autistic than is the case for the general population.

One theory I've heard is that DES exposure changes the epigenetic programming in a DES daughter's eggs. All the eggs a woman has as an adult, actually formed while she was still a fetus, during the first five months of her prenatal development (e.g. see: http://prenatalexposures.blogspot.co.uk/p/fetal-sperm-and-egg-overlooked-tissues.html ).

"Based on a survey of autism parents, we have found severity of neurodevelopmental symptoms to generally be more severe when the mother was exposed than if the father was exposed.  That may be due to the fact that maternal germ cell development remains relatively arrested as compared to the male germ line after birth."

The author of that blog, Jill Escher, was exposed to a cocktail of synthetic hormones during her prenatal development. She doesn't identify as trans, but gave birth to two children with autism. She thinks the hormones she was exposed to damaged her eggs, and that's what ultimately led to her children being born with autism.
http://prenatalexposures.blogspot.co.uk/2013/05/worse-than-thalidomide-consequences-of.html

As Jill's blog entry illustrates, although DES received virtually all of the publicity, doctors were actually handing out colossally high doses of several other manmade hormones at the same time, and the number of people exposed to these hormones could well exceed the numbers exposed to DES (and as I've mentioned previously in this thread, these other hormones could well be a cause of MTF transsexuality too, since  the entire progestin class of hormones are highly effective at suppressing testosterone production in adult men).

Yeah, the third generation problem is much more of a mystery. Partially because there are so many options, and also because research couldn't really start in ernest until recently. I was almost in a study for third generation des, but wasn't able to. I'd heard the explanation of the egg development problem, and also possibly a different hormonal response to pregnancy. My mother seems to solidly identify as a woman, and doesn't really understand gender identity. Though I probably did not experience low testosterone in utero since I identify as male, but if her eggs had some alteration in development, it could have caused any number of things in me. I am very much on the autistic spectrum though. I was unaware of that connection, and am now intrigued.

I know that I questioned what caused this in myself for years. And, a theory needs data points to make it a theory and not just a guess. The largest data point that so many fail to recognize is that there are so many of us. Many of us have felt this way from our earliest memories without external influences that can easily be identified. We are counted, although loosely, at least to the point of being recognized. We have other guesses whether it be DES, the size and nature of our hypothalamus, or hormone levels in our mommys' tummies. But the real data, the fact that we are here and that there are so many of us, can not be simply brushed aside. Ultimately, this is what has helped me understand that I am okay. I AM normal. It doesn't matter how or why, I AM.

Cindi

Hi All,

So I finally got the nerve to ask my mother about taking medication during pregnancy.  She told me she didn't have much morning sickness with me or my younger sisters.  My brother who is a year older apparently gave her much more.  When I asked her about medication, she told me our family doctor at the time didn't believe in giving anything more than gravol for morning sickness.

Anyway, she's a nurse so I guess she would remember.
Paige :)

Quote from: Paige on September 04, 2015, 11:31:23 PM
So I finally got the nerve to ask my mother about taking medication during pregnancy.  She told me she didn't have much morning sickness with me or my younger sisters.  My brother who is a year older apparently gave her much more.  When I asked her about medication, she told me our family doctor at the time didn't believe in giving anything more than gravol for morning sickness.

Hi Paige, you're getting mixed up with thalidomide! Thalidomide was the drug given for morning sickness.

DES was prescribed in pregnancies where the mother was thought to be at heightened risk of miscarriage (for instance if she was very young or aged over 40; had a prior history of miscarriage; suffered from diabetes; started bleeding or had other signs of going into premature labour). During the 1950s and 60s, they were even adding it to pregnancy vitamins, so it was used in some pregnancies where there were no problems at all.

It was normally dispensed as tablets, but from what I've been told, it looks like they were sometimes injecting mothers with it too.

Quote from: HughE on September 08, 2015, 01:49:26 PM
Hi Paige, you're getting mixed up with thalidomide! Thalidomide was the drug given for morning sickness.

DES was prescribed in pregnancies where the mother was thought to be at heightened risk of miscarriage (for instance if she was very young or aged over 40; had a prior history of miscarriage; suffered from diabetes; started bleeding or had other signs of going into premature labour). During the 1950s and 60s, they were even adding it to pregnancy vitamins, so it was used in some pregnancies where there were no problems at all.

It was normally dispensed as tablets, but from what I've been told, it looks like they were sometimes injecting mothers with it too.

Hi Hugh,  that probably makes it more doubtful my mother was given it.  She had no trouble as far as I know, 4 kids in 5 years.  Maybe I should ask her again, but it sounds unlikely.

Thanks for all the info,
Paige :)

I've recently found a photo that graphically illustrates the power of estrogens to cause female development in biological males:

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FChemical%2520intersex%2520in%2520Fathead%2520Minnows_zpscjzkuu7x.jpg&hash=34d632e9bb1b1c571ded429739f809a615b9de13)

Here's the article that image came from:

http://www.activistangler.com/journal/2014/8/4/scientists-find-more-mutated-intersex-fish-in-nations-waters.html

I've also tracked down what appears to be the original research that gave rise to the feminized fish:

http://www.researchgate.net/publication/260436624_An_environmental_oestrogen_disrupts_fish_population_dynamics_through_direct_and_transgenerational_effects_on_survival_and_fecundity

The estrogen used in the research was ethinyl estradiol, which is in many ways the sister compound of DES. Both manmade hormones are extremely potent estrogens that were developed in the 1930s, have similar pharmacological properties and similar potency weight for weight, and and have seen extensive use in medicine. DES is considerably cheaper to manufacture though, so became the treatment of choice for miscarriage prevention and other uses involving high doses of estrogen. While DES was eventually pulled off the market due to its link to cancer, ethinyl estradiol remains in use, and is in fact the estrogen most commonly used in birth control pills.

Looking at the research linked above and the photo, it has an astonishing ability to induce female development in male fish. The doses used in the experiments that gave rise to the fish in the photo were tiny, ranging between 5 and 20 nanograms per litre added to the water the fish were raised in. You'd need to drink hundreds of gallons to get the same dose of ethinyl estradiol as is contained in a single contraceptive pill, so the water isn't hazardous to human beings. Although the researchers don't say, presumably the reason the fish are so sensitive to it is because they process several times their own bodyweight in water through their gills every hour, so in a sense they are doing the equivalent of a person drinking hundreds of gallons per day!

Nonetheless, this research shows how even very small doses of a manmade estrogen with similar properties to DES, can alter male development so completely that you end up with a biologically male fish that's virtually indistinguishable from a female. Similar effects have been noted in rats prenatally exposed to DES (see the "Experimental Intersexuality" research I mentioned previously), except I haven't been able to find any photographs of the sex-transformed offspring. It should come as no surprise that biologically male human beings exposed to very high doses of the same drug, undergo female development during the time the exposure is taking place.

Hi Hugh,

I'm just wondering if you might have an answer.  At what stage in a pregnancy back in the late 50s or early 60s would a Dr have normally prescribed DES.  Would it have been right at the start or sometime later?   And at what point would right at the start be?  My guess is that it's probably no earlier than at least four to six weeks after conception.  A delay in administration of DES would answer the question of why so many are transsexed in the brain but exhibit no explicitly visible intersex conditions.


Sent from my iPhone using Tapatalk

  My cousin, a water quality chemist for the USGS was involved with this study as well as the other findings of other pharmaceuticals in the streams and rivers. Xenoestrogens are another type made as byproducts of manufacturing are getting in the system as well.

Joelene

  When I changed family doctor at the start of my transition I ended up with a duplicate copy of my medical file with records going back to age 5 in 1982.  My original doctor was a naturopath, which almost entirely ruled out the use of mainstream drugs for me or my mother.  I did however find a record of being prescribed Tofranil by another doctor for the purpose of trying to halt my bed-wetting habit of the time.  My family doctor stated in a letter to my mother that he was concerned about Tofranil because it was also known to be prescribed as an anti-depressant.  Until I just read those pages now I never knew I'd been taking a potentially harmful drug!

  The only reason I mention this is that quite often drugs may not be what they seem.  While my Tofranil ingestion obviously came to late to likely have had any effect on my childhood development, it is illustrative of the need to really dig into every bit of information you can get.  Drugs that a pregnant mother may have taken may have been viewed as completely innocuous because of the prescribed use in her own case.  The mother may not have a clue that something they took could have been involved in generating birth defects.

  I was reading a webpage, http://www.cdc.gov/des/consumers/about/history.html (http://www.cdc.gov/des/consumers/about/history.html), which has a huge list from 1976 of all the known drugs that were based on DES or related chemical formulations.  It kinda scary to think just how easily women could have taken such a medication without really understanding what they were getting into.

  Although I can't point to an obvious drug-related source for my transgender condition, I get the feeling that erring on the side of statistics and logic points to such a source and that I just don't have enough information to clear up the story.  I'm prepared to accept that my condition is purely a 'fluke' but I'm not placing my bets there just yet.  I really hope that medical science and open study and discussion of the whole trans issue will progress to the point that I can get an answer within my lifetime.  I don't need an answer - I'd just really appreciate one.

When I first started HRT during the primitive days here in New Zealand I was prescribed Stilbestrol.  I did not like it and it did not like me; - could've been due to some kind of left over organic memory I suppose ;)  I was put on Permarin after that which was a whole different story which I won't go into here.

Quote from: Deborah on October 24, 2015, 08:50:41 AM
I'm just wondering if you might have an answer.  At what stage in a pregnancy back in the late 50s or early 60s would a Dr have normally prescribed DES.  Would it have been right at the start or sometime later?   And at what point would right at the start be?  My guess is that it's probably no earlier than at least four to six weeks after conception.  A delay in administration of DES would answer the question of why so many are transsexed in the brain but exhibit no explicitly visible intersex conditions.

There's a table of doses taken from the 1953 Physician's Desk Reference here:
http://ireport.cnn.com/docs/DOC-1071366 (http://ireport.cnn.com/docs/DOC-1071366)

(the PDR is the industry "bible" that tells doctors how to prescribe a particular medication)

Apparently, that same table was published in the PDR every year until 1962, when it was replaced by a less specific recommendation to use doses of 25 - 100mg per day (even after that, most doctors probably stuck to what was in that table, since it was what they were already familiar with).

I put that table into Excel to see what the cumulative dose over the course of a pregnancy would be, and here's the results:
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FSmith%2520and%2520Smith%2520regimen%2520daily%2520dose%2520and%2520total%2520dose_zps3dhqqn0k.png&hash=0cf2e36439a56cd7bc566d4f9255fa2581d4d02d)
So, a total of 11,718 mg of DES over the course of a pregnancy if the dosing schedule was followed to the letter (which it probably was in a lot of cases, since it was the manufacturer's recommendation, and the patient would potentially have grounds to sue any doctor varying from it).

When you consider that a dose of between 1 and 3 mg per day will achieve suppression of testosterone production to castrate levels in an adult man being treated for prostate cancer, you can see how large these doses were, and how it's virtually inevitable that a male fetus exposed to this treatment would no longer be producing any testosterone during the second half of the pregnancy (which appears to be when all the important differences between male and female brains arise).

Note that the starting point was 7 weeks after the final day of the last period, which doesn't necessarily correspond to when conception actually occurred (it could be anywhere from that day up to a month later). For that reason alone, there'd be a fair bit of variability over how heavy exposure actually was during the critical period for genital development (between 7 and 12 weeks after conception), which probably explains the wide range of variability in effects on the genitals (anything from relatively normal looking male genitals to something that looks like high grade AIS). There wasn't nearly as much variability during the critical period for brain development though; it was uniformly high. It makes me think there must still be quite a lot of people who are trans as a result of DES but have yet to come out, either because they're in denial about it or are remaining closeted for personal reasons.

Interesting that I just read that DES was used in the 1940s for the purpose of, "The first reported attempt of hormonal manipulation to reduce pathological sexual behavior occurred in 1944, when diethylstilbestrol was prescribed to lower testosterone levels.".  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565125/#!po=1.61290

Where does the testosterone come from to masculinize a fetus?  Is it produced by the mother or the baby?


Sent from my iPhone using Tapatalk

just got into reading this thread (from the beginning) the other day and so much of it seems to apply - two years ago (at 61) I was really hitting bottom depression-wise and eating myself to death - since I was a kid I had gender and crossdressing issues but trans was not a "thing" so parents and society forced me along the straight path - marriage and family kept me there but I never felt right and when I finally started therapy for my depression my therapist thought I might be trans and recommended an endo to check me out - first blood test hormone results were so whacked out he did a series of tests to make sure there wasn't some form of cancer causing them - like others the T and E were both floating in limbo land at the time - with guidance and input from my therapist when the endo finally asked which hormone I want to supplement I chose the E - so E it was along with spiro - T levels refused to budge any lower so upped the dosages - 3 months later same thing and upped them again - now after a year plus on HRT I am hyperkalemic from the spiro and about to start on Lupron to try and knock out the T - now the endo is thinking that DES might be involved but with mom and dad both gone there is no way to prove it so just have to trudge along and see what happens

be well
jenifer

Quote from: Deborah on October 27, 2015, 10:48:42 AM
Where does the testosterone come from to masculinize a fetus?  Is it produced by the mother or the baby?

It is produced by the baby.  According to Wikipedia ("sexual differentiation"):

QuoteSpecific genes induce gonadal differences, which produce hormonal differences, which cause anatomic differences, leading to psychological and behavioral differences, some of which are innate and some induced by the social environment.

So during the time a baby is supposed to produce testosterone to do various things including brain differentiation it is receiving from 1 to 25 times the anti androgen dosage required to chemically castrate an adult male sex offender.  Normalize that to body weight and it's probably a dosage between 90 to 2250 times higher.

And who said the pharmaceutical indistry  didn't have our best interests in mind.  (Sarcasm Intended).


Sent from my iPhone using Tapatalk

Quote from: HughE on September 08, 2015, 01:49:26 PM

DES was prescribed in pregnancies where the mother was thought to be at heightened risk of miscarriage (for instance if she was very young or aged over 40;

My mom was 19 when she had me, which is probably why they gave it to her.

I am also a DES son. I have wondered just how far the effects of DES go?
I have had and have spermatocele's, vericoceles, as well as a small meatus (opening of the penis) and fathered 4 failed pregnancies more than likely to poor sperm quality.
Body wise, I am built like a female. My bone structure, is that of a small boned female. I am 5' 6" tall @ 135lbs. I have low muscle mass as well. My women's clothing size is a 2-4. My shoe size is 6 to 6.5 W (men's) depending on the brand. My hands are 3\4 of an inch smaller than the average male. I have a more feminine digit ratio as well. My ring size is 8.5.
My mentality, is that of a female as well. Iam into and do most of the things women do. I also have always had good motherhood instinct. I mother hen my friends kids really bad. Lol Not in a bad way though. If one of her kids is in the grocery cart at the store, I can't be any further than 3 ft. from it. Lol
Pretty much the only things that are physically male about me is my sexual gender and effects of male puberty.
The only things I have in common with men, is my sexuality (only interested in women) and I am mechanically inclined, which can be a female thing as well.
So basically I feel that I am a female physically and mentally, with male genitals and effects of male puberty.
So is it possible that I am a result of what I would call "incomplete male fetal development syndrome" aka IMFDS? Lol
Is anyone else on here the same way? Do any of you have the smaller than normal body size and such?

Quote from: Paige on September 08, 2015, 10:42:52 PM
Hi Hugh,  that probably makes it more doubtful my mother was given it.  She had no trouble as far as I know, 4 kids in 5 years.  Maybe I should ask her again, but it sounds unlikely.

Thanks for all the info,
Paige :)

Hi Paige-

I was born in 1962 and my mom had a dreadful time carrying me to term - it seems like she would have been an ideal candidate for DES. She is still alive so I was able to ask her about it and she is very certain that she took nothing but some sort of vitamin. She says that the vitamin was over the counter. I don't know if DES was mixed into over the counter vitamins but I kind of doubt it.

So i'm in a similar boat as you - I seem to have some of the classic DES symptoms with no clear source of DES exposure.

I was born in the early 60's and during that time there was lots of chemicals around that might mimic what DES does so who knows what I might have been exposed to.

At the end of the day I guess that it doesn't really matter but it would be nice to know.

Quote from: Eva Marie on October 30, 2015, 09:51:56 AM
At the end of the day I guess that it doesn't really matter but it would be nice to know.

Hi Eva Marie,

Yes I agree.  It really doesn't matter because we are who we are and there's nothing wrong with that.   

Take care,
Paige :)

Quote from: Paige on October 31, 2015, 03:25:47 PM
Hi Eva Marie,

Yes I agree.  It really doesn't matter because we are who we are and there's nothing wrong with that.   

Take care,
Paige :)

True enough.  I spent some months feeling very angry about it all, but that wasn't going to change anything so it's best to just get on with my life.

Here are my symptoms
Born between 1940 and 1971 (US) or 1980 (elsewhere):  Yes - 1962

Undescended testicles: I believe so, but it finally descended on it's own not long after birth.

Micropenis: No but I have a small pee opening.

Hypospadias:  No

Carry angle: Feminine

Digit ratio: Feminine

Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development): Yes I had one large one removed about 6 years ago and will need to have another large one removed again soon. I also have varicocele's.

Vestigial female organs or organ remnants:  Not that i'm aware of; however for some unknown reason, I periodically have "symptoms of ovulation". I have had an ultrasound, Ct scan and they have no idea why.

Intersexed genitals similar to grade 3 PAIS: No

Other genital abnormalities: Yes. I have fathered at least 4 miscarriages with 3 different women.

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones: Yes. I have a very small bone structure; that of a small boned female. My elbow breadth is only 2.25 inches. Women's clothes seem to fit me better. Clothing size 4; shoe size 6.5 men's; ring size 8.5; head circumference 22 inches. My hands are 3/4 of an inch shorter than a man's hand.  As far as my facial features? I hate mirrors, cuz who I see in the mirror doesn't match who I am. Lol But my face is kind of in between I guess.

Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle: When I had a beard, it was not very thick. I have no chest hair. I had a little hair on my belly. I have gynecomastia. I have never had the ability to build upper arm strength. I was always "the weakling".

Very shy, socially passive behavior as a teenager: Yes

Difficulty forming friendships with boys; having a special affinity with girls: Yes

Being bullied a lot; having an inability to fight back:  Yes!

Having no interest in sports: I was never into sports of any kind. The only sport I love, is figure skating.

People tending to assume you're gay; lots of men being attracted to you:
I have had a few guys hit on me. I don't feel that I "act gay", but I know that people can see that I have feminine traits.

Identifying as a woman, or part of you identifying as a woman while part identifies as a man:
I identify myself to others as a male physically, only because I don't think I would be accepted as a woman physically at least. I think people know, that I am more feminine than masculine for sure.
I think some people may tolerate it, but not truly accept me being who I really am. The is a HUGE difference between tolerance and acceptance.
I have had over a dozen women say that "it's awesome to have you for a friend cuz you are like on of the girls" Lol
I feel like I am 2 separate people sometimes.

I always had good motherhood instincts. I find myself doing the "mother hen" thing a lot with other peoples kids.

Depression: Yes

ADHD: Yes!

Other seemingly non gender related psychological problems: Not really. I always do what the voices in my head say to do. Lol I am so kidding!
Ultimately I feel that I am a result of incomplete male fetal development.

I've produced a more comprehensive version of the table of DES daily dosages, highlighting the critical periods for genital development and for development of the permanent structure of the brain. From that, hopefully it's easy to see why biologically male people who were exposed to that treatment ended up with male bodies but female brains. I've also added a column showing the daily dose at that point in relation to the maximum dose used in prostate cancer treatment (3mg per day), which is sufficient to totally suppress testosterone production in an adult man.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FDES%2520Daily%2520dose_zpsilliypcc.png&hash=d618eb9415934032bd59a42cd3ae42408fdc880b)
If that treatment schedule were to be followed to the letter, the cumulative dose over the course of a pregnancy would be 11,718 mg, roughly the same amount of artificial estrogen as is contained in half a million contraceptive pills!

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FDES%2520Lipellets%2520advert_zpswwpdwlbf.jpg&hash=869f14a46e030336ddb247f1d9ca3c627dd7d8a0)
Aside from its use in preventing miscarriages, another use for DES was to feminize cockerels, a process known as caponization (or in this advert, "lipellization"). The lifetime dose required to turn a cockerel into what is effectively a female bird is 15mg, 781 times less than the cumulative dose over a DES pregnancy in human beings! It's fairly obvious that there are likely to be long term consequences for the biologically male children who were exposed to that treatment, and that permanent feminization of the brain is a plausible outcome.

There's no way to know now since mom's gone and the doctor plus his records are long gone.  Mom was an RN and worked in the doctor's clinic (small town no hospital).  Dr. Dallas was big on prevention so DES is something he may have given in late 1948 when she was first pregnant.  I do show a lot of signs though.  Cryptorchidism at birth, life long small amount of gynecomastia and transgender.  Or maybe I just got "lucky" in the genetic lottery.

I did an interview on the 12th April for Transition radio, the main topic of discussion being the link between DES exposure and MTF transsexuality. Also mentioned are progestins, a second type of synthetic hormone that has also been extensively used for miscarriage prevention, and which I suspect could be a cause of FTM transsexuality.

Here is my page on their website:

http://www.transitionradio.net/hugh_easton.html

and here is the interview itself on youtube:

https://www.youtube.com/watch?v=QkyFUwLe22I

I hadn't noticed this thread before.  Yup, I'm a DES son.  My mom actually told me about this about 10-11 years ago when she got a question on this as part of a very long term study on women's health she was enrolled in.  (She was an RN, and the school she graduated from has been running a long term study for many decades.)

She was on high doses of DES for miscarriages when she had me, and again for one of my brothers.  I had the undescended testicles problem, and delayed onset of puberty, kick-started at age 15 with what my dad called 'vitamin shots, so you'll grow up right'.  (Gee, thanks, Dad.)  Yes, probably testosterone.  I also had all the classic DES childhood problems, poor coordination for sports, getting bullied, etc.  The freshman year in high school with undescended testicles made for extra locker room hijinks. 

Nasty side effects from that stuff.

The thing is, for me knowing that DES might have been involved is almost a distraction.  Whether or not I blame that drug, I have the dysphoria, anxiety,and depression from trying to prevent as male and bury my real self for decades, and the course of treatment is unaffected by whether or not DES is to blame.

I'm working hard to get better.

I founded the DES Sons support network online 17 years ago, and we still provide support and outreach for others. I have personally been contacted by more than 1000 DES-exposed males and a significant number report gender-related issues or concerns. If you'd like to know more, you can contact me at skerlin2000 at yahoo dot com.

In case anyone missed it, in May, Florida TV station broadcast a news segment about the link between DES and trassexuality:

http://www.wtsp.com/news/health/can-a-drug-make-you-transgender/215234337

I'm wondering if there's any way of building on that success and getting wider coverage for the story. Does anyone here have any ideas?

An interview has just been published with psychologist Dr June Reinisch, who is one of the world's leading experts on the effects of being prenatally exposed to synthetic hormones on people's psychology and behaviour later in life.

http://www.germlineexposures.org/reinisch-qa.html

There are some real gems in it which go a long way towards explaining how millions of people ended up being exposed to high doses of DES, even though it was only newly developed and largely untested.

QuoteThere were physicians, particularly ob/gyns, who wanted to do whatever they could do to help women to either get pregnant or stay pregnant. Their treatments were experimental, that is not based on research data but on their clinical understanding of the medications and how they might help their pregnant women who were having difficulty having children. The physicians in general aren't scientists. They're artists. They're the artists of medicine...The doctors took ideas from the drug company detail men, or they came up with their own ideas, but it was not evidence-based – just based upon their own experience and sense of what worked for them.

She also explains why, as an adult, it's often difficult or impossible to establish whether you've been prenatally exposed to pharmaceutical hormones. Medical records very often no longer exist, and even the mothers given the hormones often have no recollection of it afterwards.

QuoteWhen I interviewed these women after the pregnancy, they didn't know what they took—sometimes they didn't remember that they took anything. But I had read their records and I knew what the doctor gave them. I would say, for example, "Don't you remember taking little red pills every day?" "No." They were so focused on being pregnant, maintaining their pregnancy, having the baby, that they had forgotten all about it, including even when they received regular hormone injections. My studies included women who had been taking injections twice a week all the way through their pregnancy. Often they too had no remembrance of it whatsoever. Often the women weren't even told the names of the drugs. It's hard to believe that but it's absolutely true. Or if they were, they did not register.

One other thing that's happened recently is thart I've obtained a copy of a paper in which the testosterone levels of Rhesus monkeys were measured at several points during their prenatal development. The reason for falling back on research on Rhesus monkeys, is that I've gained a strong impression that no one's ever measured the equivalent in human beings. Several times I've seen a chart in which a peak of testosterone occurs at week 17 and then it falls to near zero levels for the remainder of the pregnancy, e.g.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FPrenatal%2520testosterone%2520HCG%2520and%2520LH_zpsbp3yrhdv.gif&hash=32c1d40f46df2e2c5cf021fb29905243b1a9f64f)
However I have a strong suspicion that researchers have just been requoting the same original decades old source that is not based on actual measurements, but just someone's belief that testosterone during the second half of prenatal development isn't important. There's plenty of first trimester material to work with in the form of aborted and miscarried fetuses, but how do you measure fetal testosterone late in the pregnancy without endangering the baby? You can't, and that's why I have a strong suspicion that no one has ever actually measured it in human beings.

Anyway, the results of the Rhesus monkey research are summarised in this figure taken from the paper:
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi79.photobucket.com%2Falbums%2Fj150%2Fmightyhugh%2FRhesus%2520fetal%2520testosterone%2520Fig%25202_zpsakdbhiip.png&hash=948d12b5a0a9c0903b939838fb84f086208df054)

Samples from both male and female fetuses were collected at four points during their fetal development. The first sample (at about day 55) is probably when the monkeys are at a similar point in development to human fetuses around week 17 after conception. You can see that, in males, although testosterone does fall following the peak, it doesn't drop to zero, and it rises again later in gestation. Throughout gestation, male testosterone levels are several times at least higher than in females (although the gap narrows near the due date). It's this difference in testosterone levels that determines whether you get a male or female brain, and I guess the reason females also produce some testosterone is because they need the ability to carry out some male-like behaviours too (just less than in males), so their brains also undergo some masculinisation during normal prenatal development.

Rhesus monkeys are one of the closest animal models to human beings, and I'm sure that the equivalent measurements in humans would show something fairly similar. Now imagine what happens when you throw DES into the mix, at doses more than 10x higher than what will induce complete suppression of testosterone in an adult man (which is what happened during the second half of the pregnancy with DES, when it was administered under the standard dosing schedule for miscarriage prevention that was published annually in the PDR). In a male fetus, instead of being produced at several times the female level throughout the second half of the pregnancy, its production would have dropped to near zero for most or all of that time. As a result, you'd expect to end up with people with highly feminine brains (perhaps even more feminine than an ordinary woman's brain). That does appear to be exactly what's happened too!

Was I exposed? I'm not sure - my birth is closer to the tail end of the US precription range, but the NHS does what the NHS wants.

I do have a grade 3 varicocele, and an epididymal cyst - diagnosed at 19. My mother was an RN at a teaching hospital. I was born somewhere around a month prem - her being an RN I have no reason to 'doubt the dates ;)

Was my mother exposed - quite possibly. This is where family history gets interesting. My grandmother had a uterine deformity, and previous miscarriage(s) before my mum. Mum was born at the very early age of the age range for large scale exposure of the population. My grandmother also worked in the manufacture of ammunition during the 2nd war, and will have had heavy exposure to guanidine nitrate and related compounds - many of which do not have published endocrine impacts.

I have female digit ratios, and am able to double cross my legs (mid 40's). My hips are larger than my rib cage, and the same width as my shoulders (external). My feet are (in properly lasted shoes) a 9 1/2, small for my 6' 4" stature. Yes to gynaecomastia, and female shaped shorts are a much better fit. I have non-typical fat deposition, and have great difficulty losing weight.

As a family 'joke' we place our oddities the down to my mothers defective genes. The fact that she had a radical hysto in her mid 30's, and now is nearly crippled with osteoporosis of her back, all point to some medical oddities in our collective past... If she will ever tell me, I am not sure.


Sno.

Always will be an unknown for me but i suspect i was. She was at an advanced age for the day and had miscarriages. The only I wish the medical records from the 1960s were stored some place. Still, i am reading up on it more.

Symptom wise i am a mixed bag: I have the female digit ratio. Never had issues with coordination or body development. and good at athletics. Hips are well developed. Some gynecomastia before hormones.  Was never that shy or bullied. Genitals on the smaller side but not micro. Difficult forming friendships with guys for sure. Guys hitting on me - absolutely my whole life. Depression, GD and light ADHD.

Wow - interesting to me.

If anyone thinks they might have been prenatally exposed to DES and is looking for a way of confirming exposure, if you have any teeth extracted, I'd suggest getting them off the dentist and storing them somewhere so they can later be analysed for drug traces in the tooth enamel. I don't know for sure whether DES traces can be retrieved from adult teeth, but there's good reason for thinking it might be possible. Most of your tooth enamel forms between about 4 months after conception and birth, which covers nearly all the time period over which DES was typically administered. It becomes completely sealed off from the outside world within a year after birth, and after that remains essentially unaltered (apart from tooth decay) for the remainder of the tooth's life. So there's good reason for thinking that traces of DES (or progestins) might remain within it, if these drugs were administered during the pregnancy.

  does anyone know the the year this was stopped?
i found one website that says 1978 and the rest including c.d.c. say 1971.

  i think i remember my mother saying something about her taking something. when pregnant with either me or my brother. she later found out it was discovered to be possibly bad for a fetus and had regrets from what she heard.

Quote from: 1972scarednalone on November 21, 2016, 01:58:47 PM
  does anyone know the the year this was stopped?
i found one website that says 1978 and the rest including c.d.c. say 1971.

The FDA never actually banned DES, instead all they did in 1971 was withdraw their approval of it as a treatment for preventing miscarriages. Many doctors within the US continued to prescribe it "off label" for several years after that. Outside the US, the FDA guidance didn't apply, and most European countries continued using it throughout the 1970s (I think it remained an officially sanctioned treatment in Spain until 1983). Apparently it continued to be used right up until the 1990s in some parts of the Third World.

If you were born in North America, Europe or Australasia after 1980 then you're unlikely to have been exposed. Prior to that, you could have been, particularly if there were risk factors such as a mother who was very young or aged over 40; a prior history of miscarriage; or medical problems arising during the pregnancy leading doctors to believe there was a risk of miscarriage.

DES isn't the only manmade hormone to be used during pregnancy. There's a class of hormones called progestins, which are also derivatives of a female hormone (in this case progesterone), and have feminizing effects if they're administered to adult men. There's good reason for thinking that these drugs too could be a cause of MTF transsexuality. Unlike DES, they were never withdrawn, and some are still in use even now.

  I have found 2 1980's TV programs concerning DES, although they are weighted towards the DES daughters physical problems. One was from a January, 1980 telecast of Lou Grant (Edward Asner) sitcom about a newspaper room. In this episode, reporter "Billie" (Linda Kelsey) investigates a lawsuit brought on by a DES daughter and found out that she is one as well. I saw this program shortly after it was mentioned in the newspaper. Another is a 60 Minutes Australia from 1983 similar to the one I saw earlier on one of similar TV news magazines here in the US.
  Both of these programs showed the same info such as the magazine adverts for DES, destruction of patient records by the doctors themselves, a 1953 paper that found that it was useless preventing miscarriages, and the same pessimism that any study could be done to account of any real correlation of disorders by DES exposures to the embryo or fetus than was already known. The 60 Minutes piece shows the PSA clip that Linda Kelsey made about DES put out here in the US at the intro and past the middle of the report. The 60 Minutes piece only mentioned the DES sons only briefly.
  I did try to start a conversation about this to my mom around 1983 but she would not answer me. I thought it was because of her first diagnoses and treatment of cervical cancer. She died of that after a relapse 8 years later.
  I noticed that the NIH and the CDC had taken down any mention of any gender dysphoria and prostate cancer correlations from their websites more than 3 years ago. We will never know.

Lou Grant episode "Inheritance": https://youtu.be/VHH5f2i1Sgo?list=PL3D4F4A11812DAE00

60 minutes Australia report: https://youtu.be/PNFnOjuoGLw?list=PL3D4F4A11812DAE00

Joelene

I asked my mom when I came out to her. She said the only thing she took was RX prenatal vitamins. I've read where DES was added by some manufacturers to vitamins. Still a mystery.

The local hospital I was born at destroys all medical records over 10 years old. Can you say wtf? I may never know anything about my medical situation at birth.

My bone structure is feminine. The bone shapes are female, knee and elbow angles sacrum and Sacrial angle to the ilium hip bones, ect. My pelvis is wider than my chest. Best answer I have gotten from a doctor is that the bone shapes are formed in utero. The final pelvis is based on the growth of the three hip bones before fusing however the sacrum and thereby the opening of the greater sciatic notch is determined before birth.
I had a seemingly normal male puberty except hair growth was late. My chest volume was small like the girls until nearly 17. Up until then with my wide pelvis I looked a lot like the girls without big bulky clothes on. My hip placement did not get to widen beyond my pevis width hardly at all. Not a definate male trait but I suspect a little estrogen in my teens would have made a much more significant hip. Although I didn't realize it exactly back then, I had a feminine shaped pubic hair area until around 20 when my chest started growing some hair. My back only ever grew a scattering of hairs. Around 30 my chest hair went from sparse to much more including belly hair down to the pubic area. I also then grew hair in the middle lower back that I hadn't had before.
I do not have a "normal" perineal raphe. It is instead like a slight depressed groove I suppose you would call it. The skin has like a scar tissue feel. This extends from my anus to my scrotum. The lower part of my scrotum just has a wide dark area running halfway up then it forms a raphe line. The raphe near the end of the penis splits then comes back together just before the head.

Josie, your results sound fairly similar to mine.

My exposure was definitely through prescription prenatal vitamins. The DES content is what made them prescription-only.  As with many folks, the old prescription bottles sat on the medicine cabinet shelf for a few decades past expiration, so I saw that brown bottle pretty much every day in my youth.  Mom took them during my pregnancy and one of my brothers.  She talked to me about this a few years before she passed away, when she was reminded of the DES exposure by an annual questionnaire she received as part of a very long term study program.

My brother had a surgery at around 6 months to correct a 'urinary problem' at around 6 months.  I didn't have any surgeries that I can see, but I did have undescended testicles, as well as almost no body hair and some feminine skeletal traits.  The issue with undescended testicles was corrected in my teens as part of my 'cure' with testosterone treatments.

My brother was even more introverted and solitude-seeking than I was.  He disappeared several years ago, and I often wonder if there's a "Joan P" out there somewhere now.

Sometimes I think I'm just looking for things to give myself some better feeling of validation.

I've looked into things like skull shape. To me I seem to have a mostly feminine skull. I do have a masculinized chin length, mild brow bossing, Roman shaped nose, ect. However I also have the obtuse angled jaw bone with tapering to the center. In other words not anywhere near square jawed. Overall smaller than most guys heads.

My mom says I didn't have any surgeries except the foreskin removal. My guess is my perenium raphe area was just not fully formed when I was born so it has a scar like feel to it. I'm also pretty sure that the area on my penis where the raphe line splits my urethra is open to the back side of the skin there.

I guess I'm just a freak of nature. I've always felt like a freak, now I am getting used to being ok with it. ;)

My older brother may also have been exposed the same. He has some of the similar skeletal traits like the wider pelvis than chest but is also several inches taller than me. His bone size is thicker than mine. Interestingly he is gay. We have talked just a bit about it, he has no female feelings/instincts. He was quite surprised and confused when I confessed the things I feel. He does not understand the female wants in my head.
While I'm 5-11 I have small wrists and thinner bones. One of the things the CT scan I had a while back has shown is even my hip sockets are on the very small range for a man and within the "normal" female diameter. My hip sockets are smaller than my sciatic notch width is.

About 8 big wows to everythhing in this thread.  Born in the US in August 1971, I was just early enough to possibly have gotten a shot of these, especially given my parents had been married nearly 6 years when I came along, so, even though my Dad doesn't remember the GP treating my (late) mom with anything, I can certainly see it having happened.  The hospital, however, was closed a couple decades ago, the doc is long gone, so there's no trail to follow anymore AFAICT.  I'm just grateful that my daughter shows no 3rd-generation effects.  Our only real (genetic) weirdness is being significantly taller than anyone in my family.  So be it.

Obviously I havent read the entire thread, but. Born in 1964 near Toronto, mom had a miscarrage prior to my birth. I do know she took some medications to prevent it again. while I can ask her what it was I can almost guess with some certainty what it was.......

I'm a DES son.  My brother had a cyst, which was corrected when he was young, looked like a third ball.  I'm 61 now and after years of wondering, I feel like I'm both genders, not necessarily at the same time, but sometimes most definitely one or the other or neither.  I've decided to start hrt next month to hopefully grow my breasts and feminine curves while still presenting as a male and hopefully still pleasure my wife.
What I am pissed at is that DES was even allowed to be used!



Sent from my iPhone using Tapatalk

My mother told me she was given shots to keep from having a miscarriage while pregnant with me in 1959.  Could these shots have been DES and could that be why I have the problems I have.  I ask her what the doctor was giving her and she just say's she does not know.  Is there a way of finding out?

Yes I am. After coming out to my mom, and after doing research, my mom told me she was on DES for about 6 months during the first 6 months (duh) of her pregnancy, and was abruptly removed from DES.

She did have cancer in her uterus which was removed.

Since there are no medical records available I don't know much more about this, however I am, and so is my mom, pretty sure this the reason of my gender dysphoria.

Quote from: DanaS on August 24, 2018, 03:57:55 AM
Is there a way of finding out?

I am afraid not, since her Dr. records are probably no longer available, just like my mom's

Quote from: DanaS on August 24, 2018, 03:57:55 AM
My mother told me she was given shots to keep from having a miscarriage while pregnant with me in 1959.  Could these shots have been DES and could that be why I have the problems I have.  I ask her what the doctor was giving her and she just say's she does not know.  Is there a way of finding out?

Hi, Dana!

Welcome to Susan's Place.

Unfortunately, without records or your mother's recollection, there is no way to find out for sure.  But DES was commonly prescribed at that time to prevent miscarriage, so there is a high probability that that is what it was.  Many women were told that it was "vitamins".

I am almost certainly a product of DES, as was my older brother, who is gay.  It doesn't matter much at this point, other than to reinforce the idea that we were born this way.

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(https://www.desaction.org/wp-content/uploads/Baby-Ad-Entire-e1409847562639.jpg)

I an not transgender but my Mother had two premature babies before me in the late 50's and told me she took "the special vitamins they gave all women back then to promote healthy babies." Prenatal estrogen exposure did result in a rather androgynous body:

Long arms (high arms span to height ratio)
Typical female angle in the elbows for carrying babies
Small Adam's apple, hands and feet, frame
Long index finger (2D:4D ratio)
Androgynous facial structure
Severe idiopathic scoliosis (10X more common in women)
Low male normal testosterone level

Quote from: Virginia on August 24, 2018, 08:49:07 AM
(https://www.desaction.org/wp-content/uploads/Baby-Ad-Entire-e1409847562639.jpg)

I an not transgender but my Mother had two premature babies before me in the late 50's and told me she took "the special vitamins they gave all women back then to promote healthy babies" back then." Prenatal estrogen exposure did result in a rather androgynous body:

Long arms (high arms span to height ratio)
Typical female angle in the elbows for carrying babies
Small Adam's apple, hands and feet, frame
Long index finger (2D:4D ratio)
Androgynous facial structure
Severe idiopathic scoliosis (10X more common in women)

Hi Virginia,

Interesting I too have those features and more except for the idiopathic scoliosis.  I was born in 62.  My mother said she didn't take any medication but  I often wonder if my mother was given "special vitamins".   

Thanks,
Paige :)

You're welcome Paige. Kind of scary when you realize a new medication only has to be 10% more effective than a placebo to be marketed as a treatment...

I have about 7 of the symptoms beginning with a micropenis and late descending testicles. So I am pretty sure I am a DES son, although the medical records have been destroyed. I am what I am but as Kathy says it does help explain that you are not responsible. Our brains sucked female hormones in doses 3000-5000 times higher than a single birth control pill. Meanwhile it repressed testosterone, but our bodies had already been formed. I am actually glad to find this out because I lost my first wife due to being caught crossdressing. That was over 40 years ago. If not for the internet and Susan's I never would have known about this and would have died miserable and doubting myself. At least now I know why and with the help of The Gender Variant http://www.avitale.com/  and the DES Action site.

When I was about 8 years old I felt that there was something different about me. I felt that I should have been a girl. I was born in 1948. I lived with these feelings all my life. When I was in my early 20's I asked asked my mother if she tooked DES and she said she had. After receiving this info I got checked out by my Dr. and found my that my sperm count was very very low and they were not very mobile. I got married  and told my wife about my feelings and we were able to work out how to live with being a transgender. Later I had my T levels checked and they were down to 190 and my estrogen was 40. My breast started to grow in my 30's about 1 cup size every 10 years, when I hit 70 Iam now a D cup. I also had a ultrasound on my testicles and there are about 1/3 the size they should be. All that I believe was due to the DES my mother took. I've been very fortunate to have a wife of 48 years that loves me and understands and has let me live my true authentic self. I don't know how I would have made it with out her.

Has anyone here had a DNA test done to count the X and Y genes? Apparently I have multiples of both. It was shown to me, but I didn't really know what I was looking at.

My parents adopted my oldest sister because my mother could not carry. So, she took something because every male was effected. My oldest brother had testicular cancer and had to have one removed. My other brother is obviously bi-sexual and trans, although non-transitioning, my sister turned out fine, and then there is me. A few years ago I had my E tested and was at 300 and E was at 80.

I was born in 1949 in a military hospital. All the records are gone and nobody from that time is still alive. This is a great unknown for me, but it would explain a lot of things if it happened to me.

Quote from: gingerViktorKay on August 24, 2018, 08:11:46 PM
Has anyone here had a DNA test done to count the X and Y genes?

VA raising hand with normal male karyotype

Quote from: Debbie J on August 24, 2018, 06:37:32 PM
When I was about 8 years old I felt that there was something different about me. I felt that I should have been a girl. I was born in 1948. I lived with these feelings all my life. When I was in my early 20's I asked asked my mother if she tooked DES and she said she had. After receiving this info I got checked out by my Dr. and found my that my sperm count was very very low and they were not very mobile. I got married  and told my wife about my feelings and we were able to work out how to live with being a transgender. Later I had my T levels checked and they were down to 190 and my estrogen was 40. My breast started to grow in my 30's about 1 cup size every 10 years, when I hit 70 Iam now a D cup. I also had a ultrasound on my testicles and there are about 1/3 the size they should be. All that I believe was due to the DES my mother took. I've been very fortunate to have a wife of 48 years that loves me and understands and has let me live my true authentic self. I don't know how I would have made it with out her.

Hi, Debbie!

Welcome to Susan's Place.  Thanks for jumping in with your experience!

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Quote from: gingerViktorKay on August 24, 2018, 08:11:46 PM
Has anyone here had a DNA test done to count the X and Y genes?

Yes, normal male karyotype with left hand different.

Joelene

I was born in 1952. My mother had a very hard time getting pregnant after my older sister was born. (9yrs older) I don't know what they did back then to help my mother carry me to full term. Is it possible that me being transgender was determined before I was born? I have always thought I was "sick" and "perverted" to wish I was born a girl.

Quote from: Joanne ONeal on August 25, 2018, 06:01:49 PM
I was born in 1952. My mother had a very hard time getting pregnant after my older sister was born. (9yrs older) I don't know what they did back then to help my mother carry me to full term. Is it possible that me being transgender was determined before I was born? I have always thought I was "sick" and "perverted" to wish I was born a girl.

Most scientists now believe that gender is something we are born with, determined by gender-specific structures in the brain.  Brain gender is determined in the second and third trimesters of pregnancy, unlike genital sex, which is determined in the first trimester.  So a change in hormone levels during pregnancy can result in a mismatch, otherwise known as being transgender.

DES, in the regime typically prescribed in those years, would have started at a low dose, allowing natural development of the genitals, and then increasing throughout pregnancy, causing feminization of the brain.  (Note that there are likely many causes of being transgender, with DES being only one of them.)

There is nothing sick or perverted about being transgender.  We are literally born this way.  We have no choice in the matter.  Our only choice is in how we deal with it once we figure out what is going on.

Quote from: gingerViktorKay on August 24, 2018, 08:11:46 PM
Has anyone here had a DNA test done to count the X and Y genes? Apparently I have multiples of both. It was shown to me, but I didn't really know what I was looking at.

I had a karyotype done. It came back normal 46 XY. I wondered about DES exposure however my doctor said it was far more likely I have an AR gene mutation. Basically I fit with grade 2 PAIS symtoms as they diagnostically are based on the genitals. I also have a gynocoid pelvis and female angle in my knees and elbows. Opposite from that though, my ring fingers are both slightly longer than my index fingers which is commonly a male trait. I was able to have children which is also less common in PAIS patients.
My mom was prescribed prenatal vitamins but she has no idea what was in them. My older brother is gay but has no gender issues. Both of my brothers are over 6ft tall while I am a little over 5'-10". I am also the only sibling with gender disphoria.

I did see a survey done of DES son's with verified exposure. 30% reported moderate to severe gender disphoria. Just an interesting fact I thought.

HI,

Generally, endocrine disrupting chemicals follow a pattern: weak - alteration in primary sexual characteristics like gonads and some brain, moderate - secondary structures like bones, and much of the brain, high - tertiary characteristics or everything else, including the structure of the brain....

Jen

I am convinced I am. I was born in October 1957 in England. Mum had a miscarriage before me. I was very tall, long arms & legs, no Adam's apple.

We have a much larger and more complex brain than most animals, and our brain continues to undergo development a lot longer than is the case for most animal brains. Our brain development continues throughout the 9 months of our gestation, whereas things associated with our physical attributes (like major organ development, limb development and so forth), have all largely finished by the end of the first trimester. Because it has such a long window of vulnerability, our brain tends to be disproportionately affected by any kind of toxic exposure taking place during our prenatal development, so it should hardly come as a surprise that it tends to be the main thing affected when you expose an unborn baby to feminising hormones such as DES.

Furthermore, the way miscarriage preventatives such as DES (and the drug that has since replaced it, hydroxyprogesterone caproate) tend to be prescribed means that the exposure during the first trimester is small, with much heavier exposure during the second and third trimesters. Since most or all of the exposure doesn't occur until after the physical things associated with your sex have already completed their development, that makes it even less likely that there will be obvious physical effects, and more likely that the main place the effects will show up is in the brain. A website called Hormones Matter recently published an article I wrote explaining how this works:

https://www.hormonesmatter.com/maternal-des-exposure-intersex-development-males/

Once you understand that it's hormones produced in the testicles that drive male development, that DES works very well as a chemical castration agent, and that it was typically given in progressively increasing doses that went higher and higher as the pregnancy continued, it's easy to see how it could have produced male appearing people with female brains. The exposure was still small enough during the first trimester so that a male baby's testicles could still produce testosterone. However, the dosage was progressively ramped up, and from the second trimester onwards, enough DES was crossing the placenta to chemically castrate a male fetus, causing that future person's testicular hormone production to drop to zero throughout the second and third trimesters. Since testicular hormones are what drive male development, and in the absence of those hormones, whether XX or XY, a fetus will develop as female by default, it's produced people who developed as male during the first trimester, but as female during the second and third trimesters. Because of the way development takes place in an unborn child, this results in people who physically appear to be male, but have female brains.

I think it's highly likely that hydroxyprogesterone caproate is doing the same thing, since it has similar pharmacological properties to a drug often used to chemically castrate sex offenders (medroxyprogesterone acetate), and is being given to pregnant women in what look like very high doses. The difference between DES and hydroxyprogesterone caproate is that the guidelines say to not initiate treatment until at least week 16 after conception, whereas, under the standard dosing schedule, DES was already being given in quite high doses earlier than that. So you'd expect the physical effects from hydroxyprogesterone caproate to be a lot less than from DES, even though it could still be causing female brain development to occur.

On another note, I recently found something that reinforces my opinion that the medical authorities have known for a long time that the male assigned children from DES pregnancies are often heavily physically and psychologically feminized, and they've opted for a cover up:

https://twitter.com/HughEaston/status/1032050001428525056

Thank you for chiming in to share your knowledge on this topic, HughE. I for one have come to respect you as the DES expert on gender forums.

My understanding is that the human brain continues to develop well beyond birth, into the 20's actually. Another reason teenage drug use has such devastating consequences on the rest of a young person's life.

So, this is a fascinating thread for me.

There are things about my Dad that didn't make sense that actually do with this information. I know my grandmother took DES with him because she told my parents before they got married as she was worried they wouldn't be able to have children. He was the only child she took DES with.

My father has two brothers, an older and a younger one, and he's very differently built than they are. His older brother is 6' tall, very stocky and has a deep voice. Then while his younger brother is shorter than that he is closer to 6' than my Dad is; my uncle also has a deeper voice and is more muscular. In comparison my Dad is proportioned a lot more like his mom. At his tallest he was 5' 9". He's also very slight but that had been attributed to him cutting weight for wrestling.

I actually made a quick sketch comparing the profiles of my father, my brother and myself. Mine is orange, my father's is teal and my brother's is blue. I tried to line them up at the brow so I could keep them at the same scale.

(https://farm2.staticflickr.com/1874/30605383518_93cc1f2587.jpg)

But, I actually don't think my brother or I would be surprised if it turned out our dad was a woman though. We would sometimes joke about him being more like a mom than Mom when we were kids. Then on top of that while I'm not "out" to my parents he's the one who has seemingly picked up on it and keeps encouraging me to buy a suit.

Hi, MxKale!

Welcome to Susan's Place.

Many of us older trans women suspect (or know in some cases) that we were exposed to DES in utero.  It is kind of water under the bridge at this point, but it is interesting to have a biological explanation for why we are who we are.

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@KathyLauren

Hi Kathy Lauren,

Do you know how DES was prescribed in Canada?  Was it as common as the US?  I've had a suspicion for quite some time I was a DES baby.  I was born in 62, my brother is 6'4",  I'm 5'9" with many female features. 

My mother said she didn't take anything when she was pregnant with me.  She's a nurse so she should know but I wonder if they told her it was vitamins.  I've also thought she may not remember or doesn't want to tell me. 

It would make a lot of sense.

Thanks,
Paige :)

Quote from: Paige on September 04, 2018, 10:02:25 PM
Do you know how DES was prescribed in Canada? 

Sorry, I know nothing about its use in Canada.  I think I have read that it was used here, which would make sense given its use in the U.S..  I know it was routinely prescribed in the U.S. and in the U.K., where I was born.

I was a DES son. 

I will eventually be a DES daughter.

Maybe it had something to do with the way I am.   It really doesn't matter to me.  What matters is finally being true to the woman I've repressed for so many years.


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Hi, jkredman!

Welcome to Susan's Place.

I find that knowing about DES brings me a little closure on why I am the way I am.  It is comforting to know that I am not imagining the whole thing, that it is something real. 

But, as you say, it really doesn't matter.  We are who we are, and we are just trying to be our authentic selves, whatever the cause.

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