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DES sons...(Diethylstilbestrol Hormone) were you exposed?

Started by Opaque, September 20, 2010, 01:39:11 AM

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Opaque

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.
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rejennyrated

#1
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.
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Opaque

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
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spacial

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.
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MeghanAndrews

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
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eshaver

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
See ya on the road folks !!!
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Eva Marie

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.
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rejennyrated

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.
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pebbles

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?
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Sarah Louise

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.
Nameless here for evermore!;  Merely this, and nothing more;
Tis the wind and nothing more!;  Quoth the Raven, "Nevermore!!"
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rejennyrated

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.
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pebbles

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.
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Cruelladeville

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
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rejennyrated

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)
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gorgonzola

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)
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carol_w

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. 

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Ms. OBrien CVT

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.

  
It does not take courage or bravery to change your gender.  It takes fear of living one more day in the wrong one.~me
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Randi

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.
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Cindi Jones

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.
Author of Squirrel Cage
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Joelene9

  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
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