Here's a list of symptoms that commonly seem to be associated with DES exposure:

Born between 1940 and 1971 (US) or 1980 (elsewhere) - YES
Undescended testicles - No, but my brother had one.
Micropenis - a fully formed but considerably shorter than normal penis - No, it was just unremarkable
Hypospadias - No
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Yes
Vestigial female organs or organ remnants - Yes
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - Yes

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Yes, but I learned to fight back eventually.
Having no interest in sport - No, I like sports, but I just royally sucked at playing pretty much all of them.
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes, I even thought I was nonbinary for a time.  I don't ID as male at all anymore.  It was just part of an act that kept me from getting bullied.
Depression- Yes, but I'm not since transitioning.
ADHD - SQUIRREL! (No, not you, Laura...)
Other seemingly non gender related psychological problems - Yes, severe anxiety before HRT, as well as drug and alcohol abuse.

I can Identify with a lot of this^^^____^^^. Not all mind you but much of the above I can say yes to.

Ally

Which countries outside of the US was this taken and when?

Quote from: Allyda on September 06, 2014, 04:45:08 PM
@Jen,

You think on my Reservation it might have still been in use in 1964?
Thanks in advance.
Ally

American Indian res in 1964?  That was back in the day when the government experimented on people.   Possible. ..

I'll pm off - line

Hugs

Jen

Quote from: ImagineKate on September 07, 2014, 09:03:03 AM
Which countries outside of the US was this taken and when?

As far as I know, DES was used in pretty much any country that had Western medicine. It lost it's FDA approval in 1971, although some doctors in the US continued to prescribe it "off label" for several years after that. Outside the US, it continued to be used throughout the 1970s, and in parts of Europe even until the early 1980s apparently. If you were born after 1980, you probably weren't exposed to DES. However, DES was just the first of a whole range of artificial female hormones to have been used on pregnant women, and I think that if one of these drugs can cause transsexuality, then it's highly likely that others can too.

I would think that pretty much anything that disrupts a woman's endocrine system during pregnancy could cause this.  There were plenty of transfolk before and after DES.

I am curious as to how much DES raised the frequency of transpeople in the population.

Well, though I really would like to know either way, I guess whether I was exposed or not now is irrelevant cause my Mom has passed and there's prolly no way for me to find out. Native American society is a bit different in that we aren't the greatest record keepers. We have a strong oral tradition that is still widely in practice today. Prolly, the only way I could possibly find out if it was in fact in use on my Rez in 1964 is to actually go to my Rez myself, and ask members who are old enough to have worked in our medical facility in 1964, which in itself wasn't much back then anyways. Something I may just do after I get moved back out there after my SRS. If I could in someway find out if it DES was in use on my Rez back in 1964 it would make looking into it worthwhile to satisfy my curiosity.

Many thanks to Hugh and everyone who has posted.

Ally

DES forms a very stable complex with estrogen target proteins.   I modeled the shape and binding and it probably is even better than estrogen.  I've never seen anything like this.  I am going to throw DES into a  much higher level model in the morning....  Interesting. 

If DES can cause it, than other can cause it.  That's possible but it would depend on the concentration (dose) and the binding constant with the target proteins.  (Why I'm looking at this suff...)

This stuff should never have been used.

Hugs,

Jen

Quote from: JLT1 on September 07, 2014, 09:06:55 PM
DES forms a very stable complex with estrogen target proteins.   I modeled the shape and binding and it probably is even better than estrogen.  I've never seen anything like this.  I am going to throw DES into a  much higher level model in the morning....  Interesting. 

If DES can cause it, than other can cause it.  That's possible but it would depend on the concentration (dose) and the binding constant with the target proteins.  (Why I'm looking at this suff...)

This stuff should never have been used.

Hugs,

Jen

Thanks hun for your research. It is greatly appreciated.

Ally

Quote from: Allyda on September 07, 2014, 07:52:14 PM
Well, though I really would like to know either way, I guess whether I was exposed or not now is irrelevant cause my Mom has passed and there's prolly no way for me to find out. Native American society is a bit different in that we aren't the greatest record keepers. We have a strong oral tradition that is still widely in practice today. Prolly, the only way I could possibly find out if it was in fact in use on my Rez in 1964 is to actually go to my Rez myself, and ask members who are old enough to have worked in our medical facility in 1964, which in itself wasn't much back then anyways. Something I may just do after I get moved back out there after my SRS. If I could in someway find out if it DES was in use on my Rez back in 1964 it would make looking into it worthwhile to satisfy my curiosity.

It's highly likely that DES was used on your Reservation, because it's very cheap to manufacture. If the govt were going to supply your people with any medicines at all, that would have been one of them. The two decades when it was most heavily used were the 1950s and 60s, so you were born during the time when it was most likely to have been used too. If your mother had a history of miscarriages, was aged over 40 while pregnant with you, or there problems during the pregnancy, then there's a good chance she was given it.

Your chances of there still being medical records after all this time are slim, and seeing as your Mom has passed away, probably your only way of knowing for sure is if you have a sister or perhaps an aunt who knows. Female family members are much more likely to know, because after the link to cancer was discovered, quite a few doctors did tell their patients that they'd been the drug, and that their daughters might be at risk of cancer and should have regular cancer screening.

Quote from: HughE on September 08, 2014, 04:48:44 PM
It's highly likely that DES was used on your Reservation, because it's very cheap to manufacture. If the govt were going to supply your people with any medicines at all, that would have been one of them. The two decades when it was most heavily used were the 1950s and 60s, so you were born during the time when it was most likely to have been used too. If your mother had a history of miscarriages, was aged over 40 while pregnant with you, or there problems during the pregnancy, then there's a good chance she was given it.

Your chances of there still being medical records after all this time are slim, and seeing as your Mom has passed away, probably your only way of knowing for sure is if you have a sister or perhaps an aunt who knows. Female family members are much more likely to know, because after the link to cancer was discovered, quite a few doctors did tell their patients that they'd been the drug, and that their daughters might be at risk of cancer and should have regular cancer screening.

Thanks Hugh I really appreciate it. My mom was only 14 when she had me, and I do know from the times I was a bad kid, that she had trouble with her pregnancy. What that trouble was mind you is a mystery for when she got mad at me for being bad, naturally she didn't go into specifics. Native American medical care back then was in fact supplied by the Government and done on the cheap. Since the casino's were built though in the early 90's things got a lot better out on my Rez, for all those who wanted to have those benefits. There are some elders tho who still cling to the old ways and live in the bush. But they are few these days. Anyhoo, thanks for the info. I'll just have to live with the knowledge that it is possible DES had a hand in causing my intersex and trans conditions.

Ally

The key point I've been trying to make is that there is a very strong correlation between DES and MTF transsexualism, both here and in every other place I've looked too. Not only that, but among the "DES babes" I've chatted to or friended on facebook, probably close on half were born with genital abnormalities of some kind (often quite serious things like strangulated hernias or an obstructed urethra, that required surgery immediately after birth). Probably half or more have female body markers and signs of hormonal problems too. I have mainly been meeting these people on trans support sites so there is likely to be an element of selection bias there, but even so, it's pretty obvious that there was a massive problem with that drug, and that there's been a cover up of some kind. If it's happened in the past with one of these drugs, then who's to say it isn't still going on with others?

The way I see it, there's definitely been a cover up of some kind. If you look at the CDC website on DES sons:
http://www.cdc.gov/des/consumers/about/effects_sons.html

there's a whole bunch of claims on there that don't stack up.

It says "DES sons are not at increased risk for infertility". This claim is based on a study, Wilcox 1995. However if you look at what they did in that study, they didn't do anything to actually measure fertility. All they did was ask the participants questions about the number of children, their age when the first child was born etc. Men produce so many sperm cells that, even with a lowered sperm count, they'll still be able to get a woman pregnant. All you're really measuring by counting the number of children is how keen someone was to have children. In my own case, I eventually experienced problems with sexual function and ejaculate volume, but it didn't happen until I was in my 40s. I fathered both my children when I was in my early 30s, so even though my testicular function eventually went pear shaped, it didn't have any effect on the number of children I had. Probably the same is true for most other people in a similar situation too.

I've found 3 studies in which they did measure fertility in DES sons, and found plenty of problems:

http://www.ncbi.nlm.nih.gov/pubmed/772199
J Reprod Med. 1976 Apr;16(4):147-53. "Structural and functional abnormalities in the sex organs of male offspring of mothers treated with diethylstilbestrol (DES)."

http://www.ncbi.nlm.nih.gov/pubmed/850321
J Urol. 1977 Apr;117(4):477-80. "Pathological semen and anatomical abnormalities of the genital tract in human male subjects exposed to diethylstilbestrol in utero."

http://www.ncbi.nlm.nih.gov/pubmed/37351
J Urol. 1979 Jul;122(1):36-9. "Association of diethylstilbestrol exposure in utero with cryptorchidism, testicular hypoplasia and semen abnormalities."

In those studies, nearly a third of their DES sons had severely abnormal semen, and there were similarly high rates of genital abnormalities too. So I think the CDC is fronting a massive whitewash there.

Another thing I've discovered is that the single largest cohort, or study group, of DES sons, the Mayo group, aren't typical DES sons at all. Their average exposure, 720mg over the course of the pregnancy, is around 15 times smaller than was the case for DES sons exposed to the standard "Smith and Smith" protocol for prevention of miscarriage (which is the vast majority of DES sons worldwide). Very few of the Mayo group had exposures starting earlier than 12 weeks after conception either, whereas in other studies, all the most severe genital abnormalities were associated with exposures starting earlier than 12 weeks. In other words, they've collected a bunch of people with a very small exposure to DES and who were exposed too late in the pregnancy to develop serious abnormalities from it, and made them their single largest study group of DES sons. Small wonder that they didn't find any clear evidence of abnormalities.

Here's one of the two studies they mention in which no clear evidence of genital abnormalities was found:
http://www.ncbi.nlm.nih.gov/pubmed/6357269

It was a study of the effectiveness of DES in treating toxaemia of late pregnancy, and it even says in the abstract:

"Those in the stilboestrol group started treatment at the 12th week of pregnancy on average..."

which would explain why there wasn't clear evidence of genital abnormalities, since for the majority of the participants, exposure would have started too late in the pregnancy to cause genital abnormalities.

Under the "Smith and Smith" protocol, treatment was typically started at 7 weeks or as soon as the pregnancy was confirmed, hence this study doesn't really tell us anything about the incidence of genital abnormalities in typical DES sons.

In the other study in which no clear evidence of genital abnormalities was found, Leary 1984:
http://jama.jamanetwork.com/article.aspx?articleid=395455

there isn't anything in the abstract to say when on average exposure started for the DES sons in the study, or what doses they were typically exposed to. However, since there's over 800 DES sons in the study, my guess is that it was drawing mainly from the Mayo cohort, in which case it's not surprising that there was no clear evidence of abnormalities.

There's another study mentioned on the CDC website,
http://www.cdc.gov/des/consumers/research/recent_psychosexual.html

"Psychosexual Characteristics of Men and Women Exposed Prenatally to Diethylstilbestrol" (Titus-Ernstoff et al., 2003)
In that study, they appear to have focused entirely on sexual orientation, and scrupulously avoided asking any questions about gender identity. Whether that was accidental or deliberate I don't know, but it's certainly helped to conceal what is by far the most important consequence for most natal males of being exposed to DES!

Quote from: HughE on September 07, 2014, 07:02:25 PM
As far as I know, DES was used in pretty much any country that had Western medicine. It lost it's FDA approval in 1971, although some doctors in the US continued to prescribe it "off label" for several years after that. Outside the US, it continued to be used throughout the 1970s, and in parts of Europe even until the early 1980s apparently. If you were born after 1980, you probably weren't exposed to DES. However, DES was just the first of a whole range of artificial female hormones to have been used on pregnant women, and I think that if one of these drugs can cause transsexuality, then it's highly likely that others can too.

Thanks. I was born in 78, so there is a possibility.

Born between 1940 and 1971 (US) or 1980 (elsewhere) - YES
Undescended testicles - No, .
Micropenis - a fully formed but considerably shorter than normal penis - So, how do I find this out LOL
Hypospadias - No idea
Epidiymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development) - Yes
Vestigial female organs or organ remnants - no
Intersexed genitals similar to grade 3 PAIS - No
Other genital abnormalities - No

Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones  big time.  That face there has no ffs
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle - gyno only

Very shy, socially passive behaviour as a teenager - Yes
Difficulty forming friendships with boys; having a special affinity with girls - Yes
Being bullied a lot; having an inability to fight back - Yes, but I learned to fight back eventually.
Having no interest in sport - No, I like sports, but I just royally sucked at playing pretty much all of them.
People tending to assume you're gay; lots of men being attracted to you - Yes
Identifying as a woman, or part of you identifying as a woman while part identifies as a man - Yes, I am nonbinary
Depression- Yes, .
ADHD - Is that why I keep hitting the forum at work?  Undiagnosed. and likely.)
Other seemingly non gender related psychological problems - Yes, severe anxiety before HRT, as well as drug and alcohol abuse.
[/quote]

are you kidding me

Are you KIDDING me??

There were more questions than I was aware of.

Ally you look great dear.

We have the smoking gun, and we live....and love.... and learn.

Nails out hair down heart wide open and living as best as I can, in many genders.

---Satinjoy

OK another thought. If DES had an effect of a lot of boys wanting to be girls in a patriarchal society and world. MTFs outnumber FTMs by how much and in a patriarchal society wouldn't most people crave and want to be male in a society where males have the advantage? I mean, really. What is the ratio, I think it was mentioned on this sight before. I mean seriously if it was a choice or just a psychological condition, why would anyone long so much to be female in a male ruled and dominated world when being male meant having all the advantages? Believe me, I have asked myself this question for a long time and my answer doesn't even make sense to me and that is I am hardwired female with female emotions and thinking. The big question is why? I mean I can understand why FTM strive for masculinity in a patriarchal world, God Bless them, but why would anyone want to be female in a male dominated world? It just doesn't make sense to me and really don't make sense why MTFs outnumber FTMs in such a wide margin. If it was 50/50 it would make much more sense.

So if DES could have that kind of affect, what about DNA and genetics. Could it make another whole generation susceptible to being transgendered either way, MTF or FTM?

Satinjoy- ARE YOU KIDDING ME!!!  That's freaking scary.

I knew but the scope is larger than I thought.  What I worry about is where it will be in a decade.  In me that is.  What else it did.

That is scary indeed. Sj

Quote from: Satinjoy on September 10, 2014, 04:52:27 PM

We have the smoking gun, and we live....and love.... and learn.

---Satinjoy

Dear Satinjoy. If we really had a "smoking gun" other than those of us that know and feel what DES has done to us. Well, we would already be rich. But maybe not either. I see advertisements for law firms all the time about class action lawsuits about this drug or that drug. Where I am it's about T for men, not FTM but men and the strokes and heart troubles it is causing now. Risperdal for ADHD too and about how it causes gynecomastia. Wow where do I find Risperdal on the street? I would rally love my little As to be more natural Bs.

I think Hugh has it right about big Pharmaceutical companies. Your looking at whole generations, at least 2 that they would have to compensate more or less. That won't fly with big corporations. Sweep it under the rug and pay the lawyers and you'll never hear another word about it. Sorry to say it but that is the way it goes. Both to SJ and Jill. Big money can cover anything up and we are the ones that bear their cross. Maybe like the Tuskegee airmen, after the last of us is gone, big Pharma may have a comscience. But not right now while we still are here. Just a sad fact. The smoking gun is usually pointed at your own head unless it is something someone can bandstand against. Yeah it is sad and I may be a Debbie Downer, but too many time it has happened.

Quote from: Jess42 on September 10, 2014, 09:24:03 PM
Dear Satinjoy. If we really had a "smoking gun" other than those of us that know and feel what DES has done to us. Well, we would already be rich. But maybe not either. I see advertisements for law firms all the time about class action lawsuits about this drug or that drug. Where I am it's about T for men, not FTM but men and the strokes and heart troubles it is causing now. Risperdal for ADHD too and about how it causes gynecomastia. Wow where do I find Risperdal on the street? I would rally love my little As to be more natural Bs.

I think Hugh has it right about big Pharmaceutical companies. Your looking at whole generations, at least 2 that they would have to compensate more or less. That won't fly with big corporations. Sweep it under the rug and pay the lawyers and you'll never hear another word about it. Sorry to say it but that is the way it goes. Both to SJ and Jill. Big money can cover anything up and we are the ones that bear their cross. Maybe like the Tuskegee airmen, after the last of us is gone, big Pharma may have a comscience. But not right now while we still are here. Just a sad fact. The smoking gun is usually pointed at your own head unless it is something someone can bandstand against. Yeah it is sad and I may be a Debbie Downer, but too many time it has happened.

My wife is an attorney who frequently defends against class action lawsuits.  Trying to get compensated for this would not be worth the years and years of wasted litigation time and potential costs, only to be rewarded with a voucher for like $50 off your SRS in the end if you're lucky, while the attorney who was dumb enough to piss up that rope in the first place would end up pocketing jack squat and end up in the poor house.

F*** it.  I'm just going forward.  I'd rather waste that time in front of a Marshall stack than a jury.

Quote from: Jill F on September 10, 2014, 09:32:54 PM
My wife is an attorney who frequently defends against class action lawsuits.  Trying to get compensated for this would not be worth the years and years of wasted litigation time and potential costs, only to be rewarded with a voucher for like $50 off your SRS in the end if you're lucky, while the attorney who was dumb enough to piss up that rope in the first place would end up pocketing jack squat and end up in the poor house.

F*** it.  I'm just going forward.  I'd rather waste that time in front of a Marshall stack than a jury.

Unfortunately Jill that will be more or less what would happen. Something like 50 bucks for us. Far better sometimes to look forward and hope that it has more of an effect on society and how society perceives us than anything else. 50 bucks isn't even worth a bottle of Dom Periogn to celebrate a successful courtroom win with.