” I spent the first half century of my life searching for the reason I was assigned, reared, and living as a man even though I knew I was female. As a child it was utterly confusing, and when coming out to my parents led to threats of incarceration in the state mental hospital, being the smart little kid that I was, I went silent and focused on trying to determine the causes of my misery. I could never imagine, in my wildest dreams or fantasies, ever transitioning and living full-time as myself; I couldn’t even imagine spending even a day in public as a woman. So I focused my attention on an academic future, scouring all the major libraries in the northeast, reading everything I could about gender variant behavior, trying to understand how I became who I was.
My cover being near perfect, I could do this research without arousing suspicion. I could even ask my mother questions about her pregnancy with me, and my brother, and try to tease out some information that might help me. One day she mentioned having taken the drug, DES, or diethylstilbestrol, to prevent miscarriage. Having miscarried her first time around, and being the dutiful woman that most were back in the early 50’s, she took this drug which had come highly touted from the Harvard labs. She told me she was always concerned about her exposure, but could never really learn anything about it, and was afraid to speak out. I, however, as a medical student, was under no such constraints. So I learned that the drug had been banned by the FDA in 1971 after having been tied to a cluster of eight cases of vaginal adenocarcinoma in very young women. This been unheard of in the Boston area, epidemiologists eventually traced the tumor to DES exposure in utero, and the drug was pulled.
Eventually I learned about additional long-term consequences of DES exposure, but the vast majority of them were in those assigned female. Even female homosexuality was recognized as a complication, along with breast cancer in the mothers as well as daughters, and an epidemic of infertility. A group, DES Action, sprang up in the 1970’s, fueled by the young women’s movement and books such as “Our Bodies, Our Selves.” Lawsuits were filed and won, Congress got into the act, and DES was eventually recognized as the worst drug disaster in American history. 5 million women were poisoned, and while the vaginal tumor developed in only 1:1000, it was still a true tragedy.
But what about those assigned as male? Nothing. While males were part of the few long-term follow-up studies, nothing more than a whisper of testicular cancer or a variety of genito-urinary tract anomalies popped up. DES Action put a man with brain cancer as the front for a DES Sons group, yet he didn’t even have internet or email capabilities, effectively shutting down any effective advocacy for those men.
We all know men are uncomfortable with their bodies, and don’t like to talk about their medical problems. The DES researchers, generally men, were not investigating issues of human sexuality either, so it became very easy to announce that the drug has no effects on male offspring. This in spite of the fact that DES was a super-estrogen, capable of crossing the placental and blood-brain barriers, and bathing the developing male brain with an overdose of estrogen before neurodevelopment had progressed very far. Those dosages of estrogen sure seemed to be capable of overwhelming the testosterone produced by the fetus’s testes, but the possibility was not taken seriously. Except by basic science researchers, such as Professor John McLachlan of Tulane University, who studied DES’ effects on rodents.
At a Congressional hearing on DES in 2001 I bumped into the good Professor and recounted my personal history. He told me that my medical history was classic for DES exposure, referred me to his papers, and I finally had my answers. Funny thing, by that time I had decided I could no longer live as a male and had decided to transition, so it no longer mattered to me existentially. But I had the answer.
As the medical advisor to Dr. Scott Kerlin’s DES Sons International Listserve, I had been toying with outing myself as transgender. Finally, I came out, and that opened the door to hundreds of other exposed DES “Sons.” Strange how things happen. That flood inspired Scott to start collecting data online, leading to his presentation of a paper at the e.hormone conference at Tulane in 2004, and my presentation, along with the nationally renowned intersex expert, Dr. Milton Diamond, of an expanded version of the paper, at the International Behavioral Development Symposium in Minot, North Dakota, in 2005. All the heavy hitters were there – Bailey, Blanchard, Zucker, Meyer-Bahlburg – and while they were able to ignore the paper because of our lack of proof in medical histories which had been destroyed decades earlier, the younger and more open-minded researchers accepted our thesis. Shortly thereafter Shanna Swan published her paper proving, for the first time in humans, that endocrine disruptors, of which DES is the paradigmatic compound, caused feminization of male fetuses. This past summer Congress banned the importation and sale of children’s toys containing one of the more ubiquitous EDCs, a class of molecules called phthalates.
Progress may come slowly, in fits and starts, but it does come. It will come, if people will it to happen. ”
More DES DiEthylStilbestrol Resources
- DES studies on cancers and screening.
- DES studies on epigenetics and transgenerational effects.
- DES studies on fertility and pregnancy.
- DES studies on gender identity and psychological health.
- DES studies on in-utero exposure to DES and side-effects.
- DES studies on the genital tract.
- Papers on DES lawsuits.
- DES videos and posts tagged DES, the DES-exposed, DES victims.