Susan's Place Transgender Resources

Would it help those of you struggling to come to terms with having a trans partner, to know that a high percentage of cases of transsexuality may actually be the result of medical misadventure?

In 1938, the first mass market synthetic hormone, an artificial estrogen called diethylstilbestrol or DES, was developed. One of the first uses found for DES was as a treatment to prevent miscarriage. The two doctors who came up with the idea of using DES to prevent miscarriages clearly had no idea of how potent it is, and their recommended treatment schedule involved what turned out to be colossal overdoses of the drug. The cumulative dose over the course of a typical DES pregnancy was about 12 grams, roughly the same amount of artificial estrogen as is contained in half a million modern birth control pills!

Obviously the consequences of being exposed to such a colossal overdose of estrogen weren't good, either for the mothers who took the drug or their unborn children who were exposed in the womb. The DES mothers and daughters both have very high rates of several kinds of cancer, and the daughters were often born with severe abnormalities of their internal reproductive organs that make it difficult or impossible to have children of their own.

During its heyday, DES was the standard treatment in pregnancies where there was though to be a risk of miscarriage, and it was prescribed to women in dozens of countries all over the world. Most estimates seem to place the number of mothers given the drug at about 5 million, with between 2 and 3 million "DES daughters" (and an equal number of DES sons) born worldwide during the time it was in widespread use, from about 1940 to the mid-1970s (or even more recently in some countries). It's by far the worst toxic drug disaster in the history of medicine, and yet very few people today are even aware that it happened.

While both DES mothers and daughters are acknowledged to have experienced a whole range of health problems as a result of their exposure, the official line has always been that the DES sons came through their exposure virtually unscathed. I suspect that what actually happened is that the effects on the sons were so shocking that everyone implicated in the disaster (the FDA, pharmaceutical companies and senior doctors), all decided that their only option was to try to pretend that the whole thing never happened.

Basically, what DES appears to do is to cause the process of sexual development in an exposed male fetus to switch from male to female for the duration of the time it's being administered to the mother. The result is you end up with a person who isn't really one sex any more, but has partly developed as male and partly as female.

Under the standard "Smith and Smith" treatment protocol for prevention of miscarriage, most of the exposure to DES took place during the second and third trimester, after development of the reproductive organs has largely completed, but during the time that the brain development responsible for gender identity later in life seems to take place. The result is that you usually seem to end up with someone who looks male (albeit often with intersex-related genital abnormalities), but who has a brain that's "wired up" more like a woman's brain than a man's one. Obviously these people are at high risk of identifying as women rather than men later in life. Considering the numbers exposed, I think DES is likely to be the unacknowledged cause of a high percentage of cases of MTF transsexuality among those aged 40 or older.

There's a thread about DES here at susans.org,
https://www.susans.org/forums/index.php/topic,84224.0.html

and on page 3 I've written a post (dated 25th February), containing links to a variety of online resources that I've found, relating to DES and its links to transsexuality.

Hopefully this is of help to someone!

Well, it wouldn't make any difference to me. Neither I nor my wife cared much about *why*; that she had to transition was obvious, and knowing why wouldn't change that. (Nor did I feel betrayed or lied to, or as if she were deliberately upending our lives, so I don't need some medical explanation for why she'd have to "do this" to me.) Also I think DES was banned a few years before she was born. :)

Still, it does seem plausible that DES would have caused abnormalities in both baby girls and boys.

Quote from: blueconstancy on March 03, 2014, 06:43:20 AM
Well, it wouldn't make any difference to me. Neither I nor my wife cared much about *why*; that she had to transition was obvious, and knowing why wouldn't change that. (Nor did I feel betrayed or lied to, or as if she were deliberately upending our lives, so I don't need some medical explanation for why she'd have to "do this" to me.) Also I think DES was banned a few years before she was born. :)

Still, it does seem plausible that DES would have caused abnormalities in both baby girls and boys.

DES lost its FDA approval as a treatment to prevent miscarriage in 1971, however doctors in the US continued to prescribe it "off label" for several years after that (and elsewhere, DES continued to be used throughout the 1970s). That's not the point though. If one synthetic hormone can cause transsexuality and that fact not be acknowledged, what's the likelihood that other synthetic hormones that are still in current use are having similar effects?

While it's true that there's nothing any of us can do now about something that was hardwired into the structure of our brains before birth (apart from make the best of the situation), by getting the powers that be to own up to what happened with DES, it'd go a long way towards reducing future incidences of similar problems caused by exposure to other synthetic hormones. Also, I think if the public knew that a high percentage of cases of transness are actually an unintended side effect of medical treatment with hormones, it'd go a long way towards improving attitudes towards trans people.

Another thing is that I think transness is just the tip of a much larger iceberg. There are probably many more people with other problems besides gender dysphoria (such as impaired fertility and endocrine disorders), that are also the result of being prenatally exposed to synthetic hormones. The biggest problem for me personally isn't that part of me "wants" to be a woman, it's that I've developed hypogonadism to the point where (until I started taking hormones in 2011), it had basically destroyed my quality of life. I thought it must just be a part of getting old, and it wasn't until I figured out what had probably happened while my Mom was pregnant with me, that I realised that I actually had most of the symptoms of acute hypogonadism. How many other people are there in a similar situation? Quite a few I suspect, since there appears to be a great deal of reluctance among doctors to either diagnose or treat hormonal disorders in men.

So, there's plenty of good reasons why the full story of what happened with DES should come out!

Fair enough; I agree that the story about DES should come out, actually.

But you posted this in the section reserved specifically for SOs, so you got an SO's reply to your question. :)  I don't *personally* care whether there's a medical reason for why she's trans; she just is. She's also not one of those who knew since she was three years old, and she's very very certain that it was not "hardwired into her brain since birth," either. It might have been easier for both of us if she'd known that long... but as it was, I was the one telling HER that even if medical science couldn't find a reason or "prove" she was trans, she still deserved to transition.

I'm glad you found out what was wrong and got treatment, though, and I'm sure you're correct that other people would benefit from knowing about the risks.

I am a DES "son".  According to one study one third of DES  "sons" turn out to be transsexual.

There is a Yahoo group dealing with this issue.

https://groups.yahoo.com/neo/groups/des-trans/info

DES helped my wife understand a little bit that there was more going on than meets the eye physically.... and stuck with me since she began to understand it wasnt me trying to get away from her but was something with a more physical causality.  I try to accomodate as many of her needs as I can, with professional help from the shrink to avoid her discomfort zones- but it is helpful to have something as the trigger and a physical reason as the source of the great latent pain of hitting the wall when the dysphoria is too much to handle without either cracking up or suiciding out.

HughE please keep publishing this and yes the DES thread is great.  I mean, how are we supposed to turn off our physical nerve endings and the way we interpret these impulses- trying not to feel just makes us more and more tense, conflicted and sick.  And  that says nothing of the conflict with the body in the mirror.

Just my take on it.  It is a devestating condition to be born into.

I felt very uncomfortable today that I had posted in this particular area as I know or at least think I can glimpse how painful it is for significant others be affected by our dysphoria.  My appologies, I feel like I entered sacred ground and do not belong here.

It has been a long, tough road.  My family was one of the luckier ones and it still was extremely painful to go through it, for all of us, some more than others.

Sorry I won't be in here again, not on the significant others side.  Best wishes to all.  My heart goes out to all who have been affected.  But I think its important to recognize there is a physical causality with some of this, certainly with me there is, it can soften the blow just a little.

Take care... sorry to invade privacy here.

Satinjoy : Thank you for that. I admit, I did vaguely think that maybe the SO's section isn't the place for trans people to have the conversation on how *they* feel about it - the other existing DES thread is. But you did actually talk about how your wife feels about it, so that's a valid SO perspective, if secondhand. :)

Trans people are welcome in this section to comment in ways that help SOs, I believe. (They're just not supposed to actually create posts/threads, and I'm not sure why this one is OK that way but I'm guessing because it was *directed* at the partners?) So if you have insights that would help someone navigate their relationship with their trans* spouse, please do chime in again!

I wish I knew.  I just know that the dysphoria is more powerful than anything I ever faced, and I have faced a lot.

We got the best therapist you could get, and his job working with me was to preserve my marrage and find a healthy way to deal with this.  The best move was bringing my most affected daughter in, first on a one on one with partial disclosure allowed (any topic except hormones, frankly) and the second time he had us both in there, which resulted in a resetting of boundaries on my part in terms of keeping some things private or better hidden, and resulting in all of us astounded that I was utterly clueless as to how something as small as my fingernails can trigger problems with another.  My daughter and I remain very, very close, and she understands now that there is a reason I have extreme difficulty with that.  It's complicated and the dysphoria is at the heart of it, as well as having been battered into not being allowed to have any kind of trans expression for 55 years, making it extremely hard to cut the nails.  It's like cutting out a piece of myself.  Sane? Maybe not.

My wife had a divine intervention.  No kidding.  After that our relationship healed, but I will never cross the safe boundaries that were determined through a lot of communication and a lot of teaming up with my shrink.

The best shrink available is important, mine is 30 years treating trans and I am a complicated one - so is the spiritual side, the ability for both the trans and the affected others to accomodate, see through the others eyes, and above all sacrifice selfishness - both sides- and find a place where comfort lives.  If very lucky, that place exists.

My wife with never see me full transition.  She will never see me bare either, not when my body has changed from having compatible hormones in play - and that is DES related - but we are ok with that.  She gets that my inability to perform as a male with her has nothing to do with her, her desirability, her womanhood - she is gorgeous by the way, seriously - it has only do do with my physical female polarity finally reaching a point where it could no longer be controlled.

This is my story and hers.  Each story is unique.  Some are unable to let go of outward appearences.  Actually many.  Some are lucky enough to be able to live it from the inside and leave most of the familiar man you married visible.  My wife focusses on what she needs to see, and I focus on making sure she has that presentation to cling to as a safe place of stability.

Its not like AA for a transexual (I am TS).  Its not an addiction.  It is something fundamentally different.  I am a sober alcoholic with 30 years of AA.  This is nothing like that, and that only has a 3% recovery rate.  This is far more powerful.

So there were three choices- acceptance and getting the best available professional help, or real insanity (I got right to the edge), or self destruction.  My wife and kids had no idea, I had hidden it that well.  It was devastating, but it is better than the disasterous alternatives.  Knowing there is a physical progressive element has helped everyone.  There is no more blaming.  There is just coping, living with it, finding ways to preserve that which is good, and keeping the marrage vows no matter what happens.

I wish everyone the very best dealing with this dysphoria.  The process is very difficult, but it does not have to leave us lost.  My wife and I are closer than ever, because the deception is gone from the marrage totally, and a true woman always instintively knows when something is wrong.

I wasn't going to post but I have a desire to help, and no one can tell others what to do, they can only share their own experience, strength and hope with each other and pray there are commonalities that can be used to improve life and love.

I cannot imagine the feeling of betrayal that must have been felt.  But most folks totally underestimate the scope, intensity, compulsivity and potentially relationally destructive power of this very dangerous condition.  They look to blame (both sides do), but they need to adjust, and both sides must rid themselves of selfishness so they can find common ground and preserve the gift God gave us - each other.  And take responsibilty for understanding each others deep needs for safety, security, love and honesty, and consistancy.

Best wishes.  I sure hope this helps someone somewhere.  Please, nobody hurt themselves over anything I write.  It is meant to bring healing and kindness.

God Bless.

Quote from: blueconstancy on March 06, 2014, 07:28:28 AM
Satinjoy : Thank you for that. I admit, I did vaguely think that maybe the SO's section isn't the place for trans people to have the conversation on how *they* feel about it - the other existing DES thread is. But you did actually talk about how your wife feels about it, so that's a valid SO perspective, if secondhand. :)

Trans people are welcome in this section to comment in ways that help SOs, I believe. (They're just not supposed to actually create posts/threads, and I'm not sure why this one is OK that way but I'm guessing because it was *directed* at the partners?) So if you have insights that would help someone navigate their relationship with their trans* spouse, please do chime in again!

Sorry, I wasn't intending to upset anybody! The reason I posted here is because I think more people need to know what happened with DES: that there was a colossal medical disaster that took place over several decades in the mid 20th century, during which millions of pregnant women in the US and dozens of other countries, were given extremely high doses of DES and other artificial female hormones, in a misguided attempt to prevent miscarriages. One of the consequences of that disaster appears to be that it's created large numbers of people who are genetically male and look male, but whose brain development went down the female pathway instead of the male one. 

It must be a very difficult time for SO's too when their partner discovers that they're trans, so I think it's only fair that they should know about something that, going on what I've seen, appears to be responsible for a high percentage of cases of transsexuality among those aged 40 or older.

Whatever the case, each of us is a different case and scenario, and what is extremely painful for one may be more acceptable for another in terms of limiting our gender expression among those we love -meaning the pain of the dysphoria itself.

So if the comments create better understandings and provoke helpful dialogue for anyone out there, it is good.

My own personal case is unusual and I am extremely lucky.  I just hope all present find peace.

God Bless.  I need to dissappear again now, but I wish all here the best.