Were You a DES Baby? A CDC Tool May Help You Find the Answer

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Posted

The medical community increasingly believes that a factor in one's being transgender is due to a change in the pregnant mother' hormonal surges that occur some weeks after the baby's sex organs are defined as male or female. The use of DES from the late 1930's to ~1971, which was fairly common ("Why not? It's safe and may prevent a miscarriage.") has been linked to a variety of pregnancy issues including confusion of the hormonal surges. But at this time it may be impossible to know if one's mother took DES. Even if she is alive to ask it was often included in "prenatal vitamins" either from the gynecologist or even over the counter, so she may not have known the details of what was in the cocktail.

The CDC has a simple quiz one can take that might cast some more light on this for you: http://www.cdc.gov/d...assessment.html

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Posted

Emma , I already know I am a D E S child . I was to have been interviewed by CNN last August by a lady I am close to on Facebook. We became very close friends over my medical research as the doctors here in Virginia do not wish to address Trans gender issues as thoroughly as I do. In my years out , I have collected yards of medical documents on DES and on being Transgender. I'm very lucky to have friends at UCLA d NYU who have shared studies with me. Granted, I'll never afford Medical school . Still, I can HOME study and learn .

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Posted

Hi Ellen, I think that's good to know for a couple of reasons (as far as I'm concerned):

1. It gives you some more understanding of why you're transgender.

2. You can thank your lucky stars that you don't have some of the other nasty DES-related conditions. I don't recall them all but remember people talking about some of the tragic birth defects that some DES offspring had.

I'll never know for sure if my mother took it or not, but chances are that she did given that I was born in 1956 and I'm sure she had regular and thorough medical care, so I'm sticking with that.

I think it's great that you're learning about medicine. Would you have a specialty or do you prefer the GP route? I really never saw myself as a med student, I'm too squeamish. :P

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Posted

Dear Emma and Ellen,

Found two good websites that clarify DES and transgender as well:

http://www.diethylstilbestrol.co.uk/gender-identity/

http://www.en.wikipedia.org/wiki/Diethylstilbestrol

The more we know our own bodies, the better we can advocate for ourselves.

Your friend,

Monica

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Posted

Monica,

Thanks VERY much for posting these. I've sent a request to be added to their "DES Sons" group on Yahoo, which may yield some interesting info. I'll try to listen to the interview they mentioned tomorrow or the next day. Can't do it now on my iPad because they used Flash.

This may be a huge help to me.

Thank you,

Emma

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Posted

I couldn't wait and I just listened to the radio broadcast link. Very interesting. I've sent an email to my gender therapist to see if she has any more information. And here's a couple of links that may be interesting:

DES’s Other Daughters: Neglected Evidence of Prenatal Gender Development

DES Sons Summary

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Posted

Hmmm, I'm afraid I may have misspoke when I wrote the initial posting. I traded emails with my gender therapist who wrote:

I am surprised this DES hypothesis is still floating around. It was not ever proven and there are no studies re DES and gender dysphoria. It was just a theory. As I have said, we do "believe" there is something that does happen inutero. I know Dr. Byer. She is very nice and, also, transgender. I understand that persons who are trans want physical or pathological reasons for "why me". Just as the article that
redacted
sent to group, it was written by intersex or disorders of sexual development activists, so are these articles on DES. All I can say is to continue your research. There are still trans persons who are culturally trans as well there can be a psychological basis for their gender identity.

Interesting. I let her know I'm not interested in "why me?" as much as gathering another data point for some sort of proof to myself and perhaps others of where my trans-ness came from. Anyway, I'll continue to look around for more info.

Emma

P.S. I'm so glad I finally got a chance to use the word redacted. Some here may recall all sorts of its use vis-a-vis Nixon, Watergate, and so forth. :blink:

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Posted

Dear Emma,

The first article was written in 2008 and the second was written in 2005.

My rule is to question information that is over five years old.

Don't feel bad; I have erred like this many times.

As a rule, I don't quote blogs as they are anecdotal information.

Emma, you are one of the most brilliant women I know here on TGGuide!

Your friend,

Monica

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Posted

Hmmm, I'm afraid I may have misspoke when I wrote the initial posting. I traded emails with my gender therapist who wrote:

I am surprised this DES hypothesis is still floating around. It was not ever proven and there are no studies re DES and gender dysphoria. It was just a theory.

That's sort of interesting, because I had considered posting on this thread just a few days ago.

My post, in a nutshell, was wondering if those investigating the alleged connection between DES and transsexuality were just trying to find a way to imply that transsexualism was not a natural occurance, and how they would then explain transsexuals before DES and after it was stopped.

-Michael

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Posted

Hi all,

I am a DES baby and have cancer from it then I' ve always been Bisexual so what beats up most that most DES like yourself have a higher rate of cancer or tumors. I've had six surgeries to remove cancer from my cervix and had a complete hytesroectomy and1 brain tumor and 4 breast surgries to remove those tumors.But I am tumor free right now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! yippee

.

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Posted

Oh, Violet, I'm very happy to hear that you are tumor-free. Thank goodness. You and Veronica need each other. It's clear to me from reading writings by both of you that you care for each other very deeply. I think that, too, is a real blessing, to have found and bonded with each other. Among so many millions of others you have each found the one.

Emma

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Posted

Same here, Violet... glad to hear you are tumor-free.

It's a shame that something that was intended to help people, sadly ended up being detrimental to the health of so many.

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Posted

I traded emails with my gender therapist who wrote:

I am surprised this DES hypothesis is still floating around. It was not ever proven and there are no studies re DES and gender dysphoria. It was just a theory. As I have said, we do "believe" there is something that does happen inutero. I know Dr. Byer. She is very nice and, also, transgender. I understand that persons who are trans want physical or pathological reasons for "why me". Just as the article that
redacted
sent to group, it was written by intersex or disorders of sexual development activists, so are these articles on DES. All I can say is to continue your research. There are still trans persons who are culturally trans as well there can be a psychological basis for their gender identity.

Hi Emma,

Since 2011 (when I discovered that I've experienced a lot of the same problems that "DES sons" seem to commonly experience), I've spent a considerable amount of time looking into the effects of DES on male development.

Everyone looking at the harm resulting from DES exposure seems to have focused on its estrogenic properties, however, I've noticed that aside from acting as an estrogen, DES is also a powerful testosterone-blocking drug (that's still used even now as a chemical castration agent in prostate cancer treatment). I think DES caused its untoward effects on male development through blocking T production, not by acting as an estrogen, and the fact that it's such a powerful estrogen is a bit of a red herring as far as effects on male fetuses are concerned.

Doses of DES of between 1 and 3 mg per day are sufficient to completely suppress testosterone production in adult men with prostate cancer. Under the standard "Smith and Smith" regimen for prevention of miscarriage, the starting dose was 5mg per day, progressively increased as the pregnancy wore on until a final dose of 125mg per day was reached shortly before the due date (that's right, more than 40x the maximum dose required to completely suppress testosterone in adult men!).

Assuming the placenta offered some protection, the effects on T production might not have been too severe to start with, but throughout the second half of the pregnancy, a DES mother on the standard treatment plan was receiving more than 50mg of DES per day. This is well above what will achieve full T suppression in adult men, and enough that it's virtually certain that T was being fully suppressed throughout the second half of the pregnancy in any genetically male babies who were exposed to that treatment in the womb.

Why is this important? After all, unborn babies aren't having sex or making sperm, why would they even need to produce T and have functioning testicles?

It turns out that testosterone produced in the testicles of a male fetus plays a crucial role in driving male development, and in particular, masculinization of his brain. If it's not present, then the brain develops as female instead, even if you have a Y chromosome. This is something that's been demonstrated in numerous laboratory experiments across a wide range of animal species. Despite what your gender therapist might think, it isn't "just a theory", it's solidly grounded scientific fact with close to 50 years of animal research backing it up.

Looking at the animal research, in those with similar gestation to us, the second half of the pregnancy appears to be the critical time when all the important differences between male and female brains arise. If the same applies in humans, then in theory, if you have relatively normal male T production during the critical period for genital development (7 to 12 weeks after conception), but heavily suppressed T throughout the second half of the pregnancy (the crucial period for brain development), then you'll end up as a person who is genetically male and looks male, but has a brain that developed as female. That's what I think has happened with DES, and considering that most DES mothers were put on the same standard dosing schedule, there must surely have been several million people born in that same situation. The fact that they've been made virtually invisible and the public kept completely in the dark about the whole thing, makes me wonder how much further it goes. DES was merely the first of of a whole range of synthetic female hormones that have since seen use during pregnancy, and have testosterone-suppressing effects in adult men.

If you look at the animal research, it's not just adult behaviour that ends up sex reversed, it's all the visible sex-specific differences in brain structure, and even the way the brain tissue responds to hormones. In mammals at least, whether you have a Y chromosome or not doesn't seem to make any difference at all in determining what sex your brain develops as, the whole process is driven by what hormones are present during the critical period when brain development is taking place.

In some of the animal research, they produced what were in effect FTM transgender animals, just by injecting the pregnant mother with testosterone. Apparently the reverse effect (of effectively creating MTF transgender animals) has been demonstrated too, by surgically castrating them at the appropriate stage of development. So there is good theoretical reason for thinking that DES could induce female brain development in biological males. That would explain why so many trans women born in the DES era have a known or suspected history of DES exposure!

Hugh

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Posted

Hi Hugh,

First let me thank you sincerely for writing such a detailed and thorough comment. It's so rare to have this level of thought posted and I greatly appreciate it.

From your writing it seems clear that DES may very well have caused or contributed to an upsurge in transgender MTF people. I say "upsurge" since we know that transgender-ness (apologize for lack of a better way to say it) has been around since the dawn of recorded history. So I suppose that this DES-effect would have largely occurred during the late 1930's through early 1970's. A big problem is that there is no accepted scientific test for transgender. While those of experience it know it's real as do so many therapists, endocrinologists, and surgeons, it's very hard to determine unequivocally if someone is transgender. Add to that what we know about the public's perceptions and prejudices, and we must assume that many trans people stayed completely in the closet for fear of exposure or worse.

I'd be very interested if you would post (or send a PM to me) some sort of bibliography or list of journal articles about DES and gender. I'd love to try to read them and then discuss them with the gender therapist. I think she would be open to that. After all she's a scientist in her own right, with a well-respected career at Stanford, and has been in gender therapy practice for something like forty years with more than 2,000 clients. That said, though, please don't take this to mean I accept what she says without my own consideration. I'm convinced that she means well and may just not be well-informed.

My interest stems from a desire to have something I can point to that again, in the absence of a real "test for trans-ness," is another major data point about why I am transgender. Initially I wanted this for my own benefit, to convince myself. Now I'd like it to convince others (such as children and maybe later, friends).

I'll continue to explore it, especially if you are able to provide me with reference work to study. But in the meantime I am more recently accepting my inherent nature for what it is and am just exploring what and how I will live with it.

Thanks again,

Emma

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Posted

My dear friends,

Can't help to wonder if there was an UPSURGE of transpeople born of mothers who took DES. Think transgender is MULTI-CAUSAL, and have been around centuries before DES and will be around long after DES. Suspect there was transgender as long as humankind existed. Great idea for a Master's, Ph.D or M.D. thesis . . .

Your friend,

Monica

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Posted

First let me thank you sincerely for writing such a detailed and thorough comment. It's so rare to have this level of thought posted and I greatly appreciate it.

You're welcome, and thanks for taking the time to read it!

From your writing it seems clear that DES may very well have caused or contributed to an upsurge in transgender MTF people. I say "upsurge" since we know that transgender-ness (apologize for lack of a better way to say it) has been around since the dawn of recorded history.

That's right. One of the points I've been trying to make is that there's a very strong case to be made that gender identity is innate, and not the product of socialisation but rather the result of physical differences between male and female brains that arise before birth.

For a long time, the generally accepted view among doctors and academics was that people are born "gender neutral", and the gender you identify as later in life is determined by social experiences in your early childhood. Under that theory, gender dysphoria was held to be the product of incorrect socialisation and therefore, a type of mental illness. Based on the same theory, thousands of children born with intersex conditions or other genital abnormalities were also given infant SRS (usually to female, as that was the easier to do), since it was thought that a child brought up as a girl would later identify as a girl, no matter what their genetic sex or what hormones they'd been exposed to during their prenatal development.

Unfortunately, a lot of those infant reassignments went horribly wrong, conclusively showing that the gender neutrality theory was a load of rubbish. The most infamous example of this is the sad case of David Reimer, who was reassigned following a botched circumcision which destroyed his penis. His was the index case that was supposed to have demonstrated the success of these infant reassignments, but was subsequently revealed to have been a total failure. Despite being raised as a girl, David was never comfortable with a female gender identity, and as an adult, began living as a man before finally committing suicide in 2004.

Here's a BBC documentary about the David Reimer case:

http://www.dailymotion.com/video/x225vd0_bbc-horizon-2000-the-boy-who-was-turned-into-a-girl_shortfilms

(I quite like that documentary because it's got some actual footage in it of female rats that were exposed to testosterone before birth, behaving like male rats!)

The BBC did a follow up documentary in 2004 (after David Reimer committed suicide), but it's very slanted in favour of gender neutrality, and nowhere near as good as that earlier one.

The David Reimer case wasn't a one off either, e.g. see:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421517/

"Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth"

People who had normally functioning testicles and normal male levels of testosterone present during their prenatal development seem to overwhelmingly end up identifying as male, even if they're subsequently given female genitals, are raised as girls, and never told there is anything unusual about them.

What that shows is that gender identity is something that you're born with, it's built into the structure of your brain, and it can't later be changed, whether by social conditioning, hormones or anything else.

One very important thing that not many people appreciate, is that both the physical sex you develop as, and your "brain sex", aren't determined by whether you have a Y chromosome or not, but are entirely driven by what hormones are present during the time your prenatal development is taking place. I've found a free-to-view paper which gives quite a good background to the history behind that discovery, as well as talking about the research that's been carried out to date on Rhesus monkeys.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146061/

"Effects of prenatal androgens on rhesus monkeys: A model system to explore the organizational hypothesis in primates"

One important point they mention in that paper is that, in Rhesus monkeys (which are evolutionarily quite close to us and have a reasonably similar gestation), the second half of the pregnancy is the critical period for determining the sex of their brain. Provided the hormone exposure doesn't start until after the critical period for genital development has finished, the monkeys don't look any different from ordinary female monkeys. The only way you can tell that anything unusual has happened to them is that they start behaving oddly as juveniles and adults.

Although I wasn't able to find any comparable research proving (or disproving) it, nonetheless it seems not unreasonable that if you expose a male fetus to high doses of a testosterone-blocking drug (such as DES) during the second half of the pregnancy, his testosterone will be suppressed and you'll get female brain development taking place. What's more, it's not just DES that should have that effect, but any hormone or drug that interferes with T production.

One final thing I should mention, is a condition called Complete Androgen Insensitivity Syndrome (or CAIS).

http://www.secondtype.info/ais.htm

In CAIS, people who are genetically male (XY), and have a normal, fully functioning Y chromosome, nonetheless develop as female. This proves that the Y chromosome doesn't determine whether you develop as male or female. Instead, the sex you develop as depends on whether there's androgenic hormones (testosterone and DHT) present during the time your prenatal development is taking place.

In CAIS, the hormones are actually present, however the mutation means the cells throughout that person's body are completely unable to detect or respond to androgenic hormones, so all their development takes place as if the hormones weren't present. The result, as shown on that page, is that you end up with people who are unambiguously female. Male development only occurs if androgenic hormones (testosterone and DHT) are present and able to do their job, during the time your prenatal development is taking place. Without those hormones you develop as female instead, even if you have a Y chromosome.

So I suppose that this DES-effect would have largely occurred during the late 1930's through early 1970's.

DES was developed in 1938, and by 1940 was apparently already being used by some doctors in the US as an experimental treatment for preventing miscarriages. It gained its FDA approval in 1947, and was being heavily used as a miscarriage treatment in the US (and most first world countries) from then through to the point where it lost its FDA approval in 1971. Although it was no longer supposed to be used for preventing miscarriages after that, a lot of doctors within the US continued prescribing it off label for several years more. The FDA guidance didn't apply outside the US, so elsewhere it continued being used throughout the 1970s (and until as recently as 1983 in Spain apparently).

I'd be very interested if you would post (or send a PM to me) some sort of bibliography or list of journal articles about DES and gender.

Most of the work on DES and gender was done about 10 or so years ago, and has unfortunately since disappeared off the web. However, some of it still exists in the Internet Archive, e.g.

http://web.archive.org/web/20100517035240/http://www3.telus.net/des1/index.html

http://web.archive.org/web/20100819050959/http://www.intersexualite.org/Definitions.html

(these are dead pages, however clicking on the links within them should still work, as long as what's in the link has also been archived)

I have some other links that are still current, which I'll try to dig up later.

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Posted

Dear Hugh,

Thanks again for such a detailed and thorough response. It's a delight to exchange thoughts with you. Let me start by saying that I'm well familiar (or, at least, familiar enough as a layman) with the fetal development, timing, and the mother's hormonal surges, that result in an infants primary sex and later, its gender. But it's always good to read a refresher. :)

When I initially wrote this post about DES I was excited to potentially find another data point for the basis of my gender dysphoria. But now I have a somewhat different perspective: so what? I hope you don't interpret that negatively... it's hard as I'm sure you know to communicate via posts and emails, so let me provide an example. Let's say that I am able to determine that my mother was definitely prescribed DES during her pregnancy with me. Further, let's say that use of DES is unequivocally linked to a greater incidence of gender dysphoria. Okay, then what? I'm still me, perhaps with something else to blame for my dysphoria. DES was removed from this use over forty years ago, so I presume others don't have to be protected from it. But since we know that gender dysphoria occurs without DES (somewhat less commonly) I would still not know if my mother's use of DES caused by condition or not. And "at the end of the day" I'm still left with exploring how I will best live with myself, my wife, and overall, in my life.

I wonder too if that's a reason that there seems to be an absence of more current DES research vis-a-vis gender dysphoria. Perhaps endocrinologists and others would find it an interesting subject to study but what's the payoff? I guess it would be hard to get funding.

In the end I really do appreciate your responses. I've copied them into text files on my computer for handy reference. I hope you continue to participate in TG Guide and look forward to reading more from you.

Emma

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