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.

[miriam]

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. :) <<<

[steve/lisa]

Hi,I'm lisamay,or in here steve/lisa.As a DES child myself,i suffered undescending testes,till 9 yrs old,at that time i had 4 surgery's over the next 3 yrs to bring them out,little bugger's did'nt want to stay out.At about 12 1/2 I started to get the cysts,just on the right side,at 14 they seemed to go away,in-between that,I had several of the cysts removed they hurt so bad,they'ed grow from pin-head to 3/4 of an inch in just 3 days.

At 17 It started again I thought,but this time it was gondalblastoma by biopsy,I could not face loosing it so the countless surgery's to save it went on,but after one surgery,they told me the growth was seminoma,OMG,i had to have it removed and recieved cis-platinum kemo,and that sucked,almost 4yrs later I started to loose alot of wieght,70 lbs worth,no-one again could figure this out,even since they knew I had cancer once befor.

So after a new DR did a needle biopsy,and found the seminoma again,well I could not at that time face total castration,I wanted to die,after some time later I got the surgery and kemo again,well,the DR told me it was a ovateste and arranged for karotyping of me at a med center,he said if it checks out he thought I was a tr.herm. (early 80's),well it did check out,see this was my parents and family secret even from me,now it made sense to me why mother raised me as a girl,and father as a boy.

After I got my birth records and medical records from my youth,with mother's help,I was shocked,see i was a eunuch I thought or was as I did'nt have the testes,but after karotyping,I found out I had a female reproductive tract inside me,well this made sense to me then,all those feelings I had growing up was as best confusing,but then,they made sense to me,and as mother said to me,well i raised you as lisa,so you can always be her.

So I did,that brought a long battle in me from being female or male to just 4 years ago,when i finaly relized I was happy as lisa,so thats what I am,but now they say I may have another ovateste on the leftside in normal ovary position,8 months ago I had a needle biopsy done along with a complete scoping done of the bladder and whats left of my reprodutive tract,they found tumors in my bladder,(hence the blood in my urine)and seminoma again,I don't know why this keeps happing to me but I am having a problem dealing with this card.

I have for 4 yrs been very happy finaly,and now this,why fight anymore,but i'm living outside of St Louis MO,now,and I have to go back to idaho,boise that is,to see the DR who found this and hope fully get treatment of this,I am scared to death again,i fear this one most of all,lonely,as I have no friends,or family left,they have all died over the yrs,I thought I had a friend here but they turned out to be crows after all.

So once again I must journey down this road,alone,scared to death,and wondering what I will be after this,I'm wore out I think,last june (2008) I lost my very best friend,a former lover,a friend a soulmate,to colon cancer,she was the only one I ever knew who was like me,so i feel I have been left here alone,wondering,why,but,I think I will be fine,at least I hope so,if not,then I get to finaly go home,as we are all just visitors anyway.....

[steve/lisa]

Oh things I forgot to say,my mother befor I was concieved,had 17 miscarriages,and 4 live births, I was last.But her and me had a rh factor conflict,and I had to have blood transfusions to stay alive,that was after i died 3 times so the notes say.anyway,I just thought I might mention this,as I don't know why she had so many miscarriages,maybe the rh factor was the reason,oh yah,this was befor the shot was invented.

She is gone now,so it is impossable for me to decuss this any further with her or anyone that knows,as far as i know,from talking in my past with my aunts and cousins (her sisters) none of them seemed to have a problem,but 1 aunt did mention grandmother had a similar problem with keeping from miscarriaging.
But,1 of my fathers sister's did have turner's sydrome,she was 4'6" tall had webed finger's and neck,and she loved me so much,she always thought of me as her own,as she could not have children.

Anyway all, I feel very bad today and tonight,I hope I have'nt waited to long now,been throwing up alot lately,and my adomen really hurts alot to,like doubling over type pain,so I will talk later as I think I need to lay down again folks....

[Nicola]

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

[sedyalgolla]

J'ai le meme probleme. Quelqu'un a-t-il rencontre ce probleme et trouve une solution ?