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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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GothFriendly

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.
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HughE

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!
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GothFriendly

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!
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Eva Marie

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".
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JLT1

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
To move forward is to leave behind that which has become dear. It is a call into the wild, into becoming someone currently unknown to us. For most, it is a call too frightening and too challenging to heed. For some, it is a call to be more than we were capable of being, both now and in the future.
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Eva Marie

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:



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ImagineKate

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.
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Alana_Jane

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
Alana - Beautiful/Serene/Awakening
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Eva Marie

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.
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kelly_aus

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..
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HughE

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?
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Dee Marshall

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.
April 22, 2015, the day of my first face to face pass in gender neutral clothes and no makeup. It may be months to the next one, but I'm good with that!

Being transgender is just a phase. It hardly ever starts before conception and always ends promptly at death.

They say the light at the end of the tunnel is an oncoming train. I say, climb aboard!
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Alana_Jane

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

Alana - Beautiful/Serene/Awakening
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HughE

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!
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kelly_aus

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.
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Violet Bloom

  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?

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HughE

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.
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Raelyn2

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.

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Raelyn2

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.
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Lady Smith

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.
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