My story with Ethinyl Estradiol

To me it is clear now that I went partly through menopause before age nineteen. I didn’t know that until a few years ago. I am 57 now and it took me over 40 years to understand that this was going on with me. After being exposed to high dosages of Ethinyl Estradiol (EE) at age 11 for two years to reduce my adult height, I reached a height of 1,78 meter and weighed 65 kilo’s. Within a few years or sooner after the exposure my weight dropped to 49 kilo’s and I couldn’t gain weight. I had my first gray hair at age nineteen and developed some other symptoms too. I had a weak bladder, hair loss, a menstruation cycle of 23 days (sometimes even 21), my menstruation lasted no longer than three days and was painful to a point that I could often not function properly, I had lower back pain after physical work, a deformed rib around the spleen area, belly aches around the spleen area and a feeling as if there was always a heavy weight on the back of my neck. They weren’t recognized as symptoms though by any of my doctors, my symptoms had the status of complaints.

At the time my view was that I still had the body of a child, that because of the exposure I hadn’t been able to develop my female characteristics properly. I related my low BMI, my short cycle and short and painful menstruation to the exposure and had it checked. At age nineteen I was examined by an endocrinologist in an academic. He couldn’t find any anomalies.

I pointed out to my MD that a menstruation cycle of 23 days and a period of three days is too short, that I had read that a menstruation cycle is supposed to be 25-30 days and a menstruation approximately five days. I told my MD that I attributed the short cycle and and short period and the painfulness to my exposure. MD answered: “It is perfectly normal to have a short cycle and menstruation like that, you shouldn’t take any heed of what you read, all women are different. The endocrinologist and I have examined you. There is no reason to refer you to a gynecologist or other specialist. There is nothing wrong with you.“ From now on I distrusted doctors, medicine and the pharmaceutical industry, I became vegetarian and took to alternative ways of healing.

Between age 20 and 38 I had three male partners with whom I lived together for eleven years in total. I found out for myself that getting pregnant was going to be difficult but I didn’t consult a doctor for infertility problems because I didn’t want anymore involvement with doctors or IVF (more hormones). Besides that, I reckoned that if my body wasn’t matured enough for the impact of a menstruation it certainly wouldn’t be for bearing a child. I can’t say that I am childless out of free will.

In 2001 I got my fist internet and came upon the website Tall Girls Australia (TGA). Australian women, who had been exposed to EE or DES during puberty, had organized themselves into a group. I had never met another treated women and had always been wondering about them, even asking my MD if there were any other complaints (of course not).

I started reading their testimonies discovering that most of them had gynecological and infertility problems and that the connection between their problems and exposure was being denied by every single one of their doctors. For the first time of my life I knew that I had been right all along, my symptoms weren’t from me but from the exposure. This was the beginning of my healing.

In 2004 dr. Alison Venn et al published “Oestrogen treatment to reduce the adult height of tall girls: long term effects on fertility”. The outcome of this research was that treated women were 40% less likely to conceive than untreated women. I read it soon after it was published.

By that time I understood that the integrity of my body had been violated and that I had never received any acknowledgment or support for that. No wonder my life had been so difficult so far. I went straight back to my MD and demanded to be referred to a specialist. He snapped at me: haven’t we been through all this already? A gynecologist was still out of the question. So I forced him to refer me to any specialist because of my low body weight. So several specialists checked me in an academic hospital, the one referring me to the other, one of them like my MD even getting irritated with me, and I ended up with a gynecologist after all. They couldn’t find any cause for a low BMI.

Exactly the fact that they couldn’t find any cause proves to me that my low BMI and most of my other symptoms (weak bladder, hair loss, short menstruation cycle, painful and short period that lasted no longer than three days) can be ascribed to an early partial menopause before age 19. My other symptoms, the ones pertaining to the skeleton, I also attribute to the exposure.

After reading Venn I started reading all the scientific research I could find on the topic. I even went to an academic library. I was active on a Dutch website for tall people for a while, pointing out the dangers of EE treatment and I uploaded Venn’s research. I had an email correspondence with Erasmus MC Rotterdam, department of Pediatrics and Endocrinology, drawing their attention to the dangers of EE treatment and to dr. Alison Venn’s  research. “We are doing our own research” they answered. Also I read the book Our Stolen Future by Theo Colborn. Theo Colborn made me understand how the timing of the exposure is critical, which is why the side effects work out differently for each individual, and that the exposure to endocrine disruptors like EE, DES and other synthetic estrogens or estrogen like substances is especially critical when administered during a transition phase (i.e. embryo state, puberty or menopause). The timing of the exposure is very critical, which is why exposed women have such a wide variety of symptoms.

After these studies I put it all to rest and tried to live my life as healthy and balanced as possible, anger didn’t fit that picture. Until recently I was awoken from my slumber when my contact person with TGA (now: told me that a Dutch television program (Radar) had an issue on the dangers of growth suppression with EE/DES.

Now that I am truly a post-menopausal woman, the menopausal symptoms I had as a pre-menopausal woman are now sort of “normal”. Sort of: because my BMI is still too low and some my other physical problems are still there. So with my improved health and the new “normal” after 40 years I am finally starting to feel what I am supposed to feel like. And that is important because in the years after the exposure I gradually started asking myself questions: What am I supposed to feel like? What is from me, what is from the exposure? What is the effect in me of hardly having had a puberty, growing from the healthy child that I was straight into a young adult without the transitioning phase called puberty?

I am quite disappointed with the medical authorities. Could not through all these years one doctor properly look into the problems so many treated women world wide expressed and connected to their exposure? Is there something wrong with the doctors’ protocol? Is the protocol perhaps too much inclined to “women complain”? Also I want to express my disappointment with the Dutch medical authorities for not abolishing the treatment altogether after Venn her publication in The Lancet in 2004.

I am a lay person, I didn’t really want to be reading scientific research and become a health expert. I would have much rather left the scientific reading and health studies to the scientists. I was forced to do so because they weren’t doing their jobs properly. It was necessary in order to to understand what was going on with me and to improve my own health and well-being.

Anonymous, July 2021