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Guest Douglas

Diethylstilboestrol

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Hi all,

It seems this is a not too popular forum, unfortunately. But today I got the answer (for my hermaphroditism)that I've been seeking. My mother is dead, but her sister told me that she had had a bad fall, had miscarried as a result, and had been on a particular drug to help prevent another miscarriage while pregnant with me. It turns out that the common drug used at that time - in fact, between the 1940s and 1970s, to prevent miscarriages was "Diethylstilboestrol," a major side-effect of which was hermaphroditism. The drug was eventually banned because of that side-effect. There are numerous articles on the net about it. I can't help but wonder how many other intersexed and transgendered persons are the way that they are because of this particular drug.

Douglas

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That is an interesting question. I know that my mother had a miscarriage after me and there is a four year gap between my older brother and myself. Time for a miscarriage or two. I would hate to ask and it be true that my mother was prescribed it. The guilt would be terrible for her. Some stones are better left un turned.

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That is an interesting question. I know that my mother had a miscarriage after me and there is a four year gap between my older brother and myself. Time for a miscarriage or two. I would hate to ask and it be true that my mother was prescribed it. The guilt would be terrible for her. Some stones are better left un turned.

True in some cases, but since there are or can be other health issues as a result of this drug, like an increased risk for ovarian and prostate cancer, not to mention a range of hormone imbalances, then I would think it would be a good thing to know for most people whose mothers were on the drug.

Douglas

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"DES" was a synthetic estrogen touted as a miracle drug for healthy babies. First they discovered problems with female offspring that had been exposed to the stuf. More recently, gender dysphoria in males. I am also a "DES son." I am not a hermaphrodite but bigender, the result of my tiny boy brain being flooded with estrogen at critical phases of fetal development. There are literally thouands of intersexed and transgendered persons today becasue of DES.

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Hi,

My Mom was given DES. I had my DNA analyzed and my aromatase gene is mutated, my basal nucluous of the stia terminalids in my brain is vey likely to be female. That is why I a a female!!!!

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I to am a DES son. My mother suffered miscarriages in 1952 and 1953 and when she became pregnant with me in 1954, she was immediately prescribed DES to prevent a third miscarriage. In 1991, my endocrinologist informed me that I was clinically sterile at the age of 36. My son had been born in 1987 and I was stunned by this revelation. I also suffered from both low testosterone as well as a low sperm count. I was also diagnosed with Type 1 diabetes in 1981. I didn’t get around till 1993 to informing my mother of my sterility. She said, oh my, I wonder if that is one of the side effects of having taken DES. That knocked me for a loop and she told me that she had taken the drug both while pregnant with me and while pregnant with my sister.

I worked for 18 years in Pathology and was a licensed Physician’s Assistant and Registered Histologist and have extensively studied disease. I knew I was female going back to age 5 and was referred to a child psychologist as I kept insisting that I should be a girl, wanted to dress and be a girl at any chance I could get. Great, does my sister know? Yes, I told her when you were in the Army. My sister had all kinds of fertility issues and was finally inseminated twice and bore two sons at ages 39 and 42, then had a hysterectomy shortly afterwards.

As a DES son you bear a significantly increased chance of the following: Transgendered DUH, testicular and prostate cancer, sterility due to low testosterone and low sperm count, being born intersexed and you may still be intersexed and don’t even know it!!! Woman who developed Clear Cell Carcinoma recently won a lawsuit against Bristol Meyers Squib and Eli Lilly companies, the two major marketers of DES in the United States. DES has Food and Drug approval as the drug to prevent miscarriages and continued with that classification until it was banned in 1971.

It was still an ingredient in cattle feed until the late 1990’s so you may have been exposed to the drug and nobody knows about it and never will. I learned more as I did my own research in our Medical Library at the University of Missouri where I work in the school of Medicine. I feel angry because while there were quite a few studies performed on DES daughters, only in Canada and Europe was their much research. In the US virtually little to none, long termed studies have been conducted on DES sons.

My endocrinologist who treated my type 1, juvenile diabetes and who diagnosed my sterility was from Canada, had participated in Canadian studies on DES as a Post-Doctoral Fellow and when I informed him that I was a DES son of a mother who had been prescribed DES. He told me he considered at the time he diagnosed my sterility of asking me if I had been exposed to DES. I’m angry. Due to some really negligent research, this drug was approved and has caused more misery than any other drug in History and we are still paying a terrible price for that negligence. Katheryn

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I am actually DES daughter...

Without DES, I would have been born CLEARLY female, not with ambiguous genitalia and mixed-gender tissue/organs. My obvious hermaphroditism was mis-diagnosed as a case PAIS, and my 'parts' were hurriedly surgically altered to appear and function as a male. This was a BIG mistake...

DES tends to masculinize females, in my case, to the extreme, affecting both my genome and phenome.

Thanks to DES, my life as a heterosexual female, fully capable of child-bearing, never happened. Instead, I became a lesbian trapped in a body that appeared to be male. Not as fun as it may sound, believe me...

UGH!

DES sucks...

:( Svenna

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I am a victim of DES exposure before birth. It was a secret my mother nearly took to the grave with her but thankfully she told me the truth about why I behaved so female. She hoped the problem would just go away.The truth is that the exposure demanded more answers. but there does come a time when I came to just accept what I was an move on. To me...DES is just one proof that what has happened can be caused through well meaning treatments.

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It was not until I had come out to a family member about being a CD over 15 years ago, that they told me they had learned from my mother about taking a drug to prevent miscarriages back during my gestation period. My father also confirmed the fact that I had not been my mother's first pregnancy, but was her first living child. My mother had been an RN in what was called the Army Nurse Corps, but was civilian, and not military per se. I was conceived just about the time my dad was finishing his BScie. degree as a member of US Army after WWII, (the exams had gone in his favor) and there was a move from West Virginia to California during my third month of gestation. The government Ob/Gyn who was treating my mother knew about her earlier miscarriage, and at that time there had been a rash of miscarriages based on the stress that post WWII had put on soldiers and their families, anything was worth a try, and DES was not only a pill of its own at the time, but was in vitamin supplements for pregnant women as well. There was risky behavior, but the harm was unknown at the time. A war was over, and there were dreams that had seemed beyond the people involved for years now able to happen. There was no intent to harm, only an intent to have families and forget the war.

The thing I have to remember and think about, since I went to school, especially college, with some victims of Thalidomide who had obvious harm done, was that it was all done with the idea of keeping pregnancies going and healthy for mothers and children. Both drugs, DES and Thalidomide are now classed as "Teratogens" or monster maker drugs. They just did not KNOW, we were wanted as healthy children carried to full term in families that wanted us and had hope for us. I for one do not BLAME anyone, but Its a part of my life that is not the dream that they had for me.

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DES also had FDA approval as well. A fact that the pharmaceutrical companies pushed to convice doctor's t prescribe the stuff. But ten woman smoked and drank alcohol then as well. My mother did. Kathryn

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is there a test for this

Amanda

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is there a test for this

Amanda

There is no actual test for a living person. There are tests for some of the damage it caused, but the damage also could be from other sources. If you are worried, ask your mother if she is still alive, or your dad.

Your profile says you are in your early 40's which would be right at the tail end of the use period. It was discontinued as having been of no value for the prevention of miscarriage in the early 70's, but most physicians had quit prescribing it earlier.

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Hi vicky both my parents are alive. i was born in 1967, kind of scared have not come out to them yet. coulpe of weeks ago had ekg and blood tests 9waiting for results) just trying to figure out what changed for me in the last two months and explain why. like why i am attracted to guys in the last two months before that was interested in women. don't understand the change. have ordered a book true selfs. been doing alot reading to figure out myself also add to that some surpressed memories have come back so i know things now like i knew i was different at around 8 and hated beening a boy in high school didn't feel like one. are there any tests that will show that there is something different from a normal male.

Amanda

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There are more studies being done and they are finding more and more effects. I was lucky that my mother told me but I believe otherwise it has to diagnosed by your constellation of symptoms. They can be very widely varied and present in different degrees so it is complicated. one of my Drs. brought up DE even though I have a host of classic symptoms for someone born female bodied-one of most telling being that it is impossible to get an accurate PAP test. My Dr gave up after a dozen over the years that all came back as not having enough of the right cells present to test. There were 5 Drs involved in different states at different times-from so it wasn't the Dr but something about me. Abnormal PAPs are a classic symptom but they never asked me about DE and I never told them because in those preinternet days I didn't realize there was any connection.

Never knew how many of the medical mysteries in my life are likely traceable to DES in fact until I started researching TG information and stumbled across what DRS really was and probably did to me. For just one typical instance I have fairly severe hypoglycemia and was told over 30 years ago that I would be diabetic within a very few years. This was done with the day long testing and not the less reliable tests. My blood sugar has fallen extremely low at times-into the teens. Got to a dangerously low level on the test yet it has also never progressed to diabetes and I have never become diabetic. Now studies are showing that DES also causes blood sugar abnormalities, that as with everything else with DES, can be varied and complicated. It's the only thing that makes sense to my Dr because I should have become diabetic long ago.

You can always approach your mother with the question as having read an article about DES and were just wondering. It doesn't have to be TG related. DES effects pass down to your children and grandchildren as well as making you up tp 40 times more likely to have some cancers. As are your offspring. There has been a confirmed rte of 41% of those exposed having intersexed conditions. If there is a chance you were exposed you need to know as does your medical provider for reasons that go beyond TG issues.

I hope for your sake you were spared. i blame no one -yet there is some evidence the drig company knew and covered up -I refuse to let that damage me more than what has already been done with causing more anger and bitterness in my life. But I look at my daughter and my granddaughter and KNOW they will be affected-that much is certain-though how and to what degree I don't know-and my heart does break. I think of all the fear the PAP tests caused at first and the blood sugar problems as well as the TG issues and I have to work pretty hard on that attitude.

Johnny

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Johnny:

I know exactly what you are talking about not getting a reliable PAP smear. The cells just don't stain like they should and trying to read the slides is nearly impossible to accurately diagnose. Blood sugars down in the teens are really dangerous because you may begin to have a seizure. When I get that low, I often hallucinate and when that begins to happen, I'm in some serious trouble. It's the one really bad worry of mine living alone. I'm giving some thought to going back on a Continuous Glucose Monitor that will warn me of falling blood sugars before I find myself in danger of not being able to help myself. I doubt if they will ever discover all the issues that this drug has or will cause. Kathryn

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Thanks Kathryn. now I understand better why the tests just don't work on me. I have been refusing to take them with my new Dr of the last few years after a move. He isn't up on stuff and didn't understand -that will help when I go in next week and refuse again to have a humiliating experience that is utterly useless to me. :D

After dealing with it for so many decades I have gotten so I can spot the signs of the beginning of a blood sugar slide and also the triggers. It's one of the reasons I start my day with bacon every day-diet or not -because I have found that the fat and meat stabilize my blood sugar. My lowest reading was 13 and it was a pretty bad experience. And once decades ago I had been driving and skipped a meal though I drank a coke but didn't have any more with me when returning from a trip. I was less than 3 blocks from home and could not remember how to get there or my name! I did manage to pull over and eat a candy bar I had and then after awhile I was able to get home. Scared me badly. I'm extra careful when driving now and always have something like a Payday around for an emergency. I like Payday because the nuts keep the blood sugar up after the sweet wears off. For me anyway. When losing this weight I have found the Quaker Chewy Granola Bars are a lifesaver because they can give energy and keep my blood sugar up but at 90 calories aren't so full of sugar they trigger a subsequent fall. I eat 2 a day in fact -morning, afternoon and before bed-to keep my blood sugar stable and energy up. Works for me but I know how individual it can be.

I have managed to live alone-or as a single parent-with this most of my life. Luckily the bad blood sugar falls were usually around my best friend and daughter's aunt because we spent all our free time together. Her son was a brittle diabetic and she had me test with a glucometer when she saw signs and knew what to do. That had a lot to do with me being able to recognize and deal with it I'm sure.

Not that I don't still get myself into a little trouble and end up with that fuzzy brain feeling sometimes-but only on my "eating days" since I changed my eating patterns. I'm thinking lately more and more that it isn't worth it even then because I feel so badly the next day

Thanks again!

Johnny

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Boy reasons to ask your parents -- increased risk of prostate cancer in DES sons after age 40!! For mom's sake just now, you doctor just wanted to assess your risk for that after <your story>.

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Yes .. very intersting .. I know that the drug was often used with women carrying twins. I was born inthe late 60's an dhave a twin borther. We both were quite "gender variant" growing up. My mother was was also exposred to DDT spraying as she grew up on a (no-organic) ranch ... DDT can interstingly, my mother also had a twin brother ( they seem cis, however.) . None of us have physical evidence of being intersex but I know that there are times when this condition can only be seen in DNA and none of us have been tested. So ... it is a possiblity.

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The whole DES exposure thing is interesting and scary. I know my spouse was most likely exposed and blames it as the cause of the intersexed condition. There is reason to think I may also have been exposed (my mother had a miscarriage before having me and almost died from blood loss so DES is a definite possibility when she got pregnant with me considering her Dr had warned her NOT to get pregnant again after that), but no way to find out for sure. I have some of the typical symptoms of DES exposure mentioned above: hypoglycemia (did not know until reading Johnny's post that this was possibly from DES), 2 auto-immunes (I'm told this can be caused by DES also), and I have had a couple abnormal paps that cleared up on their own in a few months giving a normal result the next time. That was before I'd heard of DES and my Dr at that time told me abnormal results can be caused by anything and as long as it was normal in a few months I was okay. Since finding out about DES I mentioned to my new gyno I might have been exposed before she did my pap and she seemed largely unconcerned. She said everything looked fine and that the only concern was risk for cancer. Anyway, this is a good thread - good info. Sad though that the typical doc knows very little about this. Of course, they know very little about so many things... DES and gender issues are just the tip of the iceberg when it comes to the lack of knowledge of some doctors (my Dr didn't even know the guidelines for Fibromyalgia had been changed over a year ago until I told him... and he's the one who diagnosed it!). So... it's good that there are people doing their own research and sharing it in places like this. :thumbsup:

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I get the connection between DES and females with cancer, but their has been zero proof to show that DES causes or is even causative of transgenderism. Their are just as many, if not more, transgender children today as their were then, and they were not exposed. So as much as I would love a reason for my affliction, (I am a DES son too) I'm not at all convinced DES is the reason. If it were, then transgenderism would have slowed to a trickle or disappeared, but in fact is has not.

Just my $0.02

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.

I was born in 1949....

My mom had been on DES previously.....

But whether or not it caused my TS or if it was caused by some apple I ate, it really makes no difference anymore....

DES is no longer used......

I am most certainly TS....

And there is only one treatment.....

End of story. (although it would be nice to have something concrete to blame it on...)

Dee Jay

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I agree with you, DJ. I think some people just need something or someone to blame their troubles on, but really, there is no test for DES exposure, and there is no way to know for sure (at least not yet) what causes anyone to be transgendered. I think there has been some evidence of DES exposure causing intersexed conditions, but that's just what I've been told (I really don't have the time to research it myself, nor do I feel a need to).

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Not about blaming for me but understanding. The official DES site last said 41 percent of those exposed have some degree of intersexed which can have additional health repercussions. That is the rate among DES babies who have been genetically tested so far. They are just now doing some of the research and the more they do the worse it is.

And with at least a 40 fold increase of cancer risk not only for me but my descendants then that is not about blaming my TS either but a genuine need to know. DES genetic changes have been proven to be passed down as far as the 3rd generation so far.

I have had nearly well over a dozens PAPs in my life with consequent scares because not one was testable. Classic DES symptom. I need to know because of that so I can clue my Dr in and quit wasting money on tests that will never work on me.

DES has been scientifically proven to cause transgebder in the other mamals species tested but there is not considered a large enough population of transgendered people to test humans. And according to the official sites I read that and that alone is why it is not officially recognized as causing TS and TG in humans.

I don't care what caused my TS but I do care about what my actual genetic damage or changes may be and about the increasing number of conditions that are being found to be either caused or impacted by DES.

We do need to identify what DES has done because there are an estimated 1 million Americans who are intersexed because of it by conservative estimates-many unknown even to themselves-it is by the way standard medical procedure not to reveal to an intersexed individual who had surgical intervention unless they know. Those one million Americans are very likely to have genetic damage that will pass down to any children they may have-and in many intersexed conditions having children I possible although usually like myself only when the individual goes on a hormone like the old birth control pills. Or fertility treatments

Also if I can get the gentetic testing and prove that I am intersexed-and there are literally dozens of indications-then all treatment is covered by Medicare. OrMedicade-or insurance. It can make a real difference in what treatment someone is able to get.

Johnny

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It's only commonsense that if you expose a developing fetus to high doses of artificial sex hormones such as DES, then the end result is likely to be a baby who is intersexed or has partially developed as the wrong sex.

There's a condition called Complete Androgen Insensitivity Syndrome which shows that, in humans, male development is entirely driven by the action of testosterone (and its derivative DHT) on androgen receptors. Any drug that either interferes with hormone production in the testicles (DES does) or acts as an antiandrogen (in the doses that were being used for miscarriage treatment, DES very probably does this too), has the potential to cause female development in a male fetus. Conversely, exposure to a drug that mimics the action of testosterone has the potential to cause the opposite - male development in a female fetus.

If a male fetus is exposed to DES or one of these other hormonal miscarriage treatments, you'll get normal male development up until the point where the drug starts being administered, and then, I think often completely female development for the remainder of the pregnancy. Since pretty much all the developmental events associated with the genitals, reproductive organs and physical sex take place in the first trimester, and the remainder of the pregnancy is when most of your sexually dimorphic brain development takes place, there's obviously a very high potential for these miscarriage treatments to create people with a male body, but whose brain has predominantly developed as female.

Both estrogens and progestins have the ability to shut down testosterone production in adult men at quite modest doses, well below those commonly used for medical treatment in women. Presumably they do the same in a male fetus (or at the very least it would be prudent to assume that they do unless proven otherwise!). There is definitely a potential for causing intersexed development in baby girls through medical hormones too though, because some of the hormones previously given during pregnancy are known to have had the ability to drive male development in a female fetus (see the wikipedia article on progestin-induced virilization). I'm not sure whether any of these drugs are still being used, but since no one has yet owned up to what DES did to the DES sons, who knows what's going on with these other hormonal treatments!

Nova said in her comment earlier "... I'm not at all convinced DES is the reason. If it were, then transgenderism would have slowed to a trickle or disappeared, but in fact is has not.".

DES is long gone, but other artificial female hormones are still used during pregnancy. This is why the fact that there seems to be a very high rate of transgenderism among DES sons is so important - it shows that exposure to medical hormones before birth can cause trangenderism later in life. If one of them can do it, the chances are others can as well, perhaps including some that are still in current use!

There are two types of female hormones: estrogens and progestins. DES is an estrogen, and it and all other estrogens were withdrawn from use in pregnancy in the 1970s. However, estrogens were simply replaced in these miscrriage treatments with progestins, which continue to be used to the present day. Progestins are just as effective at interfering with testicular hormone production as estrogens, and many progestins have a significant antiandrogenic action as well. Depo Provera, which is used to chemically castrate sex offenders, is a progestin. Spironolactone and androcur are both progestins too.

As I've been trying to tell people, hydroxyprogesterone caproate is also a progestin, and the standard dose for prevention of miscarriage is either ***mg or ***mg per week, which looks like a very high dose in relation to other depot progestins.What would happen to an adult man if you tried injecting him with that same weekly dose I wonder? This is a widely used treatment that is probably given to several million pregnant women around the world every year (and 50 percent of the time, to their unborn sons as well!).

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