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

[stephaniec]

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.

[Laura_7]

My daughter might see it happen when she's my age, but it won't be in my lifetime.

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

[HughE]

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.



(This advert appeared in 1957)

[HughE]

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:



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!

[Dee Marshall]

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!

[cheryl reeves]

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....

[HughE]

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.

[Laura_7]

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

[- Rachel -]

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.

[HughE]

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.

[Paige]

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

[HughE]

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.

[HughE]

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!

[RomeoEcho]

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.

[Sharon Anne McC]

*
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.

*

[Elli.P]

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.

[Joelene9]

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

[Lady Smith]

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

[Randi]

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

[HoneyStrums]

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....