Updated: Dec 27, 2019
Exposed to Diethylstilbestrol (DES) In-Utero
During the spring of 1948, a woman named Ellen became pregnant by her husband, Russ, and nine months later, on February 8th, 1949 she gave birth to a boy they named Joseph. Under most circumstances, this would be a normal pregnancy, a normal birth, and a normal life for Joe.
But this wasn't the case for Joe. Unbeknownst to Ellen at the time, she was prescribed a medication which for many mothers resulted in harm to not only their unborn fetus but to subsequent generations as well. The drug – Diethylstilbestrol (DES) – was a synthetic estrogen meant to ease the potential complications from pregnancy including the possibility of a miscarriage as well as to alleviate morning sickness. Hormones, like this estrogen, control a wide range of biological processes involved in the day to day running of the human body and are also critical drivers of the development and maintenance of both masculine and feminine attributes.
The earliest of these synthetic substances was diethylstilbestrol (DES). DES was developed by a team of chemists in the UK in 1938 and is a powerful and potent synthetic estrogen (some reports indicate it is hundreds of times stronger than a birth control pill today) and was prescribed during the 1940s and 1950s and continued to 1971. It was then discontinued for causing birth defects and long-term health problems for both the sons and daughters of mothers who took DES. In this particular case, Joe is a DES son.
Doctors and the pharmaceutical industry quickly realized that synthetic hormones had tremendous potential as medicines, and they were rushed to market with comparatively little safety testing, and even in spite of clear evidence of harm during what few animal experiments were performed. Later research (2011) on lab rats has shown that DES causes male rats in-utero to develop as female instead of a male during the time it's administered.
Now – here's Jo/Joe's story ….
I've become, not intentionally, what I am now calling the "accidental transgender" … I say this is "accidental" as this isn't something I suddenly decided to do - many transgender women just say they can't live a lie any longer and then transition by taking cross-sex hormones. A male who wishes to transition to female will take estrogen. A female wishing to become male will take testosterone. In my case, we've learned my mother took the estrogen medication diethylstilbestrol - DES - during her pregnancy with me in 1948/49. The potency is extraordinary - many magnitudes stronger than a normal dose of estrogen today – some reports say up to 200 times stronger than a normal dose of estrogen today.
This medication has a significant impact on the unborn fetus. For women who are the daughters of women who took DES during pregnancy (DES Daughters) the side effects are quite extreme and may include; 1) Clear Cell Adenocarcinoma (CCA) of the vagina/cervix, 2) breast cancer, 3) structural changes of the reproductive tract, 4) infertility, 5) high rates of ectopic pregnancies, miscarriage, stillbirth, and preterm labor, 6) preeclampsia, 7) endometriosis, 8) uterine fibroids, 9) para-ovarian cysts, and 10) early menopause.
In the sons of DES mothers (DES Sons), they've discovered the primary side effects are related to gender and birth defects affecting the genitals. Other side effects include hypogonadism and musculoskeletal abnormalities (scoliosis). In my case, DES exposure may have caused; 1) testicular deformities which resulted in a partial orchiectomy at age 19, 2) scoliosis, 3) hypogonadism, 4) gender dysphoria (for me it began at age five), 5) left-handiness – an odd one for sure but in the average population approximately 11% will be left-handed, and in DES-exposed off-spring it's 14% and, yes, I am left-handed, and 6) a powerful desire to transition genders later in life – and I have.
Unfortunately, no animal or other testing was done with this medication when it was first created back in 1938 and was rushed to market by Eli Lilly in the U.S. Recently, however, testing has been done on rats, and the researchers found that male rats, whose mothers were administered DES while they were in-utero, changed to female. And this, unfortunately, is what may have happened to me.
I've spoken with doctors in Lansing and gender specialists at the University of Michigan's Comprehensive Gender Services Program where I am a patient regarding DES exposure and the impact it may have on DES Sons. Although there's an immense amount of anecdotal evidence concerning DES exposure, there is little scientific evidence proving the link between DES and the impact it may have on gender. What I know is I was first conceived as a male and have XY chromosomes (I was tested recently). However, when my mother started DES, my body and brain were flooded with high potency estrogen up to the time I was born. This would have most likely started at the beginning of the second trimester and continued to birth. And this is the period where the development of the unborn fetus is most affected by hormones.
We know today that when a male wants to transition to female medically, they do so by taking cross-sex hormones – estrogen. This triggers the body to begin a second puberty where the female secondary sex characteristics emerge. Recently, one physician posited that due to my exposure to high levels of estrogen in-utero, I may have transitioned before birth - essentially being born a transgender female baby. Did that happen? There are certainly those who would argue against this as there is absolutely no scientific evidence to support this claim. But in many ways it makes sense to me. I often wonder why, at the age of 5, did I know I was meant to be female? The reality is we'll most likely never know. But, for me, this makes sense and until someone comes up with another more plausible explanation, I'm claiming it!
I was raised male as all the male parts were there, but I also had numerous birth defects which could be attributed to the medication. One endocrinologist said I could have gone my entire life without any gender problems. Or at any point during my life my body could essentially revert back to being female as it may have been at birth - and that's just what seems to have happened. About four years ago when they were trying to fix the fact I had almost no testosterone (resulting from DES exposure), they gave me a testosterone supplement, Androgel, and that's when my body seemed to revolt and began converting the incoming testosterone to estrogen (via the aromatase enzyme). At this point my body (and my mind) began changing and I started growing breasts and my body began feminizing. And this was before I realized what was happening.
Interestingly, this also started to happen when I was 22-years-old, and my family doctor began giving me testosterone injections. Right away I began growing breast buds. When I told him, he said, "well – I don't think we'll continue with this treatment." But that's all he said.
Now, based on several factors including my doctors' recommendations and the recommendations of the University of Michigan's Comprehensive Gender Services Program, we made the decision to change my medication protocol from testosterone to estrogen, and I'm now on a full course of female hormones (estrogen and progesterone). This decision was made, in part, as I had several other medical issues (some related to my hormones) and I went from feeling pretty bad all the time on testosterone to feeling amazing on estrogen! I use the analogy that before this I was running on bad gas and now, I'm running on high octane! And along with this I've become very motivated and focused on being healthy, eating a healthy diet, exercising every single day, and I've lost 100 pounds and 18 inches around my waist.
Given all that I've learned about DES exposure and the medical and social issues related to transitioning genders, I now consider myself the "accidental transgender woman." As I said up front, I did not intend to do this, and I never imagined this would be the direction my life would go. I often wonder why me and how different my life would have been if my mother had not taken DES – however, that's in the past and it's not something I can undo. This is my life, and I intend to live my life to the fullest and, as I'm 70-years-old now, I'm not worried about all the other issues a younger man may worry about. I'm good – and for me, that's all that matters. What others think is their issue – not mine – and I'm now refocusing my work on improving transgender healthcare for those in my community.
I've discovered there's very little information for doctors, nurses, and other healthcare providers on how to care for this vulnerable and underserved population of patients. Additionally, there is little to no training in medical education. My mission now is to remedy this problem by working with medical schools, hospitals, nursing programs, clinics and professional organizations who provide healthcare in our local communities, across Michigan, and across the nation.