DES information

[PattiDESAction]

Diethylstilbestrol (DES) is a drug prescribed to prevent miscarriage, and also for problem pregnancies in general, primarily between 1938 and 1971 – but not limited to those years. It is a synthetic estrogen and caused health problems for the mothers who were given the drug (breast cancer) and for the children they were carrying. Known health issues for DES Daughters include clear cell adenocarcinoma (cancer) of the vagina and cervix – which is very rare, as well as breast cancer and infertility – among other reproductive tract problems. DES Sons may have experienced underdeveloped or undescended testicles. Some DES Sons were born with microphallus (micropenis). This has no impact of fertility, although it can have psycho-social significance. DES Sons also often suffer from epididymal cysts.

Over the years one of the most perplexing concerns expressed in the DES community has been whether DES exposure affected the neurological system and sexual differentiation. One 1983 study stated that, “sex hormones are known to have effects on the organization of the brain in experimental animals with consequential behavioral effects.”

It does appear that DES did reach the fetal brain in these animals. In an ordinary human pregnancy, the mother’s estrogen does not reach the fetal brain. We do not know if DES did reach the brain and, if it did, whether it could influence brain development. There may be protective factors in humans so that DES would not have the same effects as it has shown in lower mammals.

We have seen reports on animal models that similar endocrine disrupting estrogens can significantly alter the normal biological process of sex and gender differentiation in the brain. Perhaps DES also has had these effects in humans?

However, an article from the Journal of Epidemiology on psychosexual characteristics of DES Daughters and Sons has data from a large National Cancer Institute study that shows 95% of the subjects, male and female, reported exclusively heterosexual partners. There were no reports of AIS being linked to DES exposure, however, it is possible the cohorts, though large, were not large enough to tease it out. Also, growing fetuses are exposed to many environmental chemicals these days, making it difficult to precisely determine cause and effect for any particular one.

Without a doubt, more research is needed. At this time we cannot say whether DES exposure has any involvement with AIS. We just don’t know. So we conclude with what a scientist once wrote, “Absence of evidence is not evidence of absence.”

[fraulein_Maria]

Glad to see you, and hope you will keep us posted. In the mean-time, please look around. I know one DES daughter with CAH (whom i believe you spoke to) and a DES son that wants to transition because his male body just doesn't seem to function as male for him... If ever a person had a post natal physical reason to re-assign, its him.

And those 2 are just for starters.

[Nicola]

DES is not good, my mother was on DES when she carried me in her.

[miriam]

Originally Posted by PattiDESAction

At this time we cannot say whether DES exposure has any involvement with AIS. We just don’t know. So we conclude with what a scientist once wrote, “Absence of evidence is not evidence of absence.”

It's plausible many mothers of children with AIS have used DES because DES was supposed to prevent miscarriage AND miscarriage seems to be more frequent in AIS carriers (=women with two x-chromosomes of which one has a mutation or deletion on the AR gene).

My mother had seven miscarriages, that's why my sister is 11 years older than I am.

But it would be unfair to say DES would have had any influence on my diagnosis as AIS is caused by mutations of the gene encoding the androgen receptor and 70% of the women with AIS got their defective x-chromosome from their mother. The other 30% are de novo mutations and only if we can prove the prevalence of AIS was higher in the period DES was subscribed, it would make sense to suspect DES to be involved with those de novo mutations. I don't think there is such link.

PattiDESAction, from your post I read you believe in 'active feminization', is that right?

In the classic model the standard pathway for gender development is female and it takes androgens to activate the male pathway. So even without estrogens, a child without testosterone would be a female. What are your thoughts about estrogens? How would they interact with gender development?

Groeten, Miriam

[PostOpLesbian]

She told me she took a testosterone like hormone to prevent miscarriage. Myself i had a rather large thang which worked out great for a deep canal for GRS genital reconstructive surgery. However not being interested in males i has had no use. I also have rather large hands. The rest of my body is very feminine. I knew as a tiny child i was female well not male and well i hated puberty and hated to do that dirty deed to get rid of that nasty urge and felt much better afterwards when i had no urges. One day i took hormones to stop my thinning hair and it chemically castrated me and took me back to pre puberty which i loved and no longer did i have to do that dirty deed and i was free to be me and well i quickly went out and had my testes removed. Within a yr i had the rest of my body and face fixed and have been living as a prepubescent female now for over 10 yrs and love not having the desire for sexuality. I love just feeling the feeling of love and that has me getting all wet naturally without even knowing it. That too me is so natural and not painful either physically or mentally. I don't think i am a DES baby and mom still says she took testosterone as she had heard of DES and heard of side affects back then. I had two siblings who the catholic DR told my mom died at birth and she was lucky because they both has mixed genitalia. We think the catholic DR snuffed them out back in the early 50's because they couldn't fit them in the male female box. Anyway then i was born and then my sister ruth and then she lost two mopre to miscarriage and then had my two younger sisters rose and carol. Oh she has two older boys and a older girl. That was before the miscarriage of the hermaphrodites ' intersexed siblings who died at birth. Maybe someone here can help me figure out more.

[Kailana]

you'd really need to ask your mother more questions. Or maybe see if she can request medical records of her care, if any are still around that might shed some light on what she took.

Real sorry to hear about all the siblings who didn't make it. that has got to be a tough thing to wonder about, not knowing bothers me more then most doctors seem to understand. But maybe somebody around here might have an answer or a possible one. best of luck, 58 years is a long time to try and get answers too questions.

[Revy]

Ah, DES. I'm a 3rd Gen kid from a DES user. There's been plenty of problems to mention, I can say that much for sure, but despite the many questions I've asked, I don't have a lot of information as to the issues. I have my own set of problems, but lack the money and coverage to check things out for sure. I have no idea about anything really due to lack of ability. *shrugs* I get by with things, I guess. my state is a sucky piece of crap that hardly offers anything to anyone unless they're of ethnic diversity or pregnant.

[Kailana]

medical or mental dissabled Revy when it comes to state assistance programs. Also many people are turned down when the people they talk to see them as able to function in society. If you have been denied assistance then reapply, if your able to get by as you say, then perhaps they see that too. Your managing life, perhaps not ideally for your own needs, but assistance by the Government has it's limits, and what is offered is often given to those who they judge are in need of it. If you aren't satisfied with their judgements, then challenge them. Keep reapplying or just keep doing what you are doing and perhaps try a lil harder. If you are in need of assistance you should be able to get some. If your income is too high, then your not gonna get any. If your income is under their standards, they should offer some support, like Food Stamp program, or even some medical care or coverage for prescriptions.

If you can't get any help, then talk to pharmacies, I have heard that Walmart and a few other pharmacies do offer low prescription costs for those with low income, but who don't have medicaid or the medical coupon. You can also check Pharmacy companies too, to see if they have discounted medication programs as well.

thanks for posting but please try not to make judgements based on lack of information. People who qualify for State assistance do so, for whatever reason they meet our Governments requirements for assistance.

[fraulein_Maria]

[QUOTE=Revy;19262]Ah, DES. I'm a 3rd Gen kid from a DES user. There's been plenty of problems to mention, I can say that much for sure, but despite the many questions I've asked, I don't have a lot of information as to the issues.

>>> depends on who you ask. If your asking your average GP, they don't now jack about us. ditto for most "specialists". I didn't find out until after i had been Dx'ed by a CAH specialist that i had been wasting my money for years on endocrinologists.....

silly me! the adrenals are endocrine glands. But that's not who Dx'es most gals with CAH (or anyone with DES). It can exascerbate Gyn problems, but most gyns don't know diddly either.... though they have heard of how DES affects XX'ers, but don't know about XY'ers. I haven't been to a urologist to know, but i suspect they know just as little as gyn's for XY'ers.

Turns out that the specialist that is most likely to recognize your symptoms is a REPRO-ENDO.

Which really sucks. It means that most IS folks will not get the help they need in adulthood unless they serendipedously want to become parents.

You say you lack money and coverage, and i hear that. i also know that when you next have some of either, that you will do some investigating. A repro-endo will give you the best bang for the buck.

In the mean-time, the DESaction website is the best place to educate yourself for your specific condition.

Then come back and share. <<<