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When Being a Tall Girl Was a Medical Condition: DES and the Tall Girls

Published on July 26, 2022

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To treat young healthy prepubescent girls with a known carcinogen to stunt their adult height sounds like a bizarre science fiction experiment, but it is unfortunately true. From 1959 through the 1970s physicians and researchers from the Royal Children’s Hospital and the University of Melbourne, gave adolescent girls of tall stature a powerful estrogenic hormone with a growing list of known side effects called diethylstilbestrol (stilboestrol) or DES.

DES had been used in obstetrics to prevent miscarriage, in farm animals to bulk up livestock before slaughter, and to caponize (castrate) chickens from the 1940s through 1970s. Early on, the drug was found to be ineffective in preventing miscarriage and serious side effects including cancer were noted. Indeed, cancer in farm hands caring for animals treated with DES and concern about the effect DES-infused meat might have on human health caused the FDA to ban its use in poultry farming in 1958, well before banning its use in human women. Despite the risks associated with this drug, clinicians and researchers in Victoria Australia, funded by governmental agencies and throughout the US, Norway, and elsewhere, thought stunting the growth of tall girls, for purely psychosocial reasons, was a good idea.

The rationale behind treating tall girls was so they could do ballet, buy clothes more easily, and find boyfriends and husbands. DES was used on healthy girls for purely psychosocial reasons. Apparently, being a tall girl was reason enough to consider medical treatment with a powerful, largely untested, synthetic estrogen with mounting evidence of carcinogenicity.

Little consideration was given to the psychosocial effects this drug would have on a young girl including nausea, the immediate onset of menstruation, the sudden development of breasts, and sudden rapid weight gain; and, of course, the long-term health outcomes of this treatment were never a consideration. The only long-term outcome considered was adult height. When meeting the tall women who underwent this treatment, it is reasonable to conclude the treatment did not work. Indeed, most of the research suggests only a 4cm reduction in height.

Discovering the Tall Girls: DES Action Australia

DES Action Australia was established in 1979 as the national support and advocacy group for individuals exposed to DES. In the early 1980s, the DES issue was new to us all and we were devouring information about its history and use. One aspect of interest was its use in veterinary practice. One of the first DES “patients” may have been Tricky Woo of the ‘All Creatures Great and Small’ books and TV series. In the late 1930s, kindly Dr. Herriot prescribed the new “wonder drug” stilboestrol for Tricky Woo’s embarrassing problem with incontinence.

Any drug which was thought to prevent miscarriage and result in bigger, healthier babies was of obvious interest to veterinary science. However, as in the earlier laboratory animal experiments, DES was soon shown to be deleterious to the health of the mother animal, to the DES-exposed offspring, and, interestingly, to subsequent litters. Thus, recommended use of DES in veterinary practice was limited to old animals and animals that were never going to breed.

We first heard of DES being used to inhibit the adult height of tall young girls almost by accident. In the early 1980s a sister of DES Action member, Clare Green, was studying veterinary science at Melbourne University. Through her, we learnt of a Melbourne veterinary scientist, Dr. Anne Jabarah, who had researched DES during the 1960s as part of her Master’s and PhD studies. Clare rang Dr. Jabarah and spoke to her at length about her research findings: that administering DES to cattle led to them subsequently developing mammary cancer. Dr. Jabarah commented that the published articles caused a great deal of interest internationally but not in Australia. Almost as an afterthought, she mentioned the Royal Children’s Hospital (RCH) here in Melbourne had requested details of her research, as they were thinking of using DES to inhibit the growth of young girls. She said she had often wondered whether they went ahead with the treatment.

Clare, on behalf of DES Action, wrote to the RCH seeking clarification on the matter. A letter was received from the medical director of the RCH stating that DES had never been used for such a purpose. In addition, Clare was asked to go into the Victorian Health Department to meet with a department spokesperson. The doctor told Clare that the matter had been looked into and there was no evidence that DES was used for this purpose. We were thus reassured, both in writing and in person, that no such trial had taken place.

So it came quite a shock several years later when I was contacted by a young woman who had been part of this nonexistent trial. She had attended the RCH and had been given DES to stunt her growth. She was in her early 20s and had been diagnosed with advanced invasive cervical cancer. As she was a nurse she knew this was very rare, particularly as she had none of the known risk factors for the disease.

When I asked her how she found out about DES Action and obtained my phone number, she said her treating doctor (a well-known Ob/Gyn) had suggested she ring. He had made the connection between her DES exposure as a young girl and the subsequent cervical cancer.

Another letter was sent to the RCH, again requesting clarification on the matter. We received back a very defensive letter in which the hospital distanced itself from the trials. They said that the clinician involved had been a private consultant and what he did in his clinics was in no way connected to the RCH.

Untangling the Tall Girls Trials after Years of Secrecy and Denials

In subsequent years (the mid-1980s to 1997) we received a handful of further inquiries from “tall girls” requesting information. Unfortunately, these were spaced too far apart for us to put the women in contact with each other. The health concerns of these women had an all-too-familiar ring: dysplasia, endometriosis, ovarian cysts, aggressive cancers (cervix and breast), impaired fertility, and premature menopause (i.e. occurring during their 20s).

I can’t really describe my feeling when I opened The Age newspaper on 27 June 1997 and read on page 1: Hormone tests on teenage girls referred to inquiry. I think the main emotion was a sense of relief – that the truth would finally be known – tall girls were given DES to stunt their growth. It also brought back to me the anger and frustration Clare and I experienced in the early 1980s when our inquiries were fobbed off by the medical establishment and health authorities.

And then my phone started ringing. As DES was mentioned in the article, the newspaper must have had me as a contact and referred any inquiries to me. Remembering how previously we were unable to put the women in contact with each other, I made a contact list of every phone call received. I explained to every caller the importance of organizing, of forming a group to share experiences, and offered to give them the list to follow up. From memory, I think Janet Cregan-Wood was about the fifth caller. She rang back the next day and “volunteered” to take on the role. And so the Tall Girls group formed and their DES story emerged.

More about DES and Tall Girls Story

Normal at Any Cost: Tall Girls Short Boys, and the Medical Industry’s Quest to Manipulate Height
Participation, Empowerment, and Effectiveness: The Tall Girls Inc. Experience.
Tall Girls, Inc. Australia
DES and the Meat Industry: My Year of Meats, by Ruth Ozeki

About the author: Marian Vickers is a DES daughter and, in 1979, was a founding member of DES Action Australia. As the DES story has evolved over the years so her focus has broadened – from issues around DES exposure to the wider issue of safety of pharmaceuticals; and finally to an understanding of endocrine disruptors and the implications for public health, particularly in terms of inadequate drug safety surveillance and reporting systems. In 2008 Marian became a ‘Gardasil mother’ when her elder daughter’s health was severely impacted by the HPV vaccine. Not only did she gain an appreciation of what DES mothers went through, she sees disturbing parallels between the DES and Gardasil stories.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

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This article was published originally on Hormones Matter on April 21, 2014.

Maternal DES Exposure and Intersex Development in Males

by Hugh Easton

Published on June 8, 2022

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In my ongoing research into connections between maternal DES exposure and male sexual development, I recently obtained a copy of the 1953 Physician’s Desk Reference (PDR), a compendium of pharmaceutical products listed together with their manufacturer’s recommended usage.

“Physician’s Desk Reference is published annually by Medical Economics, Inc., through the courtesy of the manufacturers whose major products are described in section 4. It is distributed to over 130,000 active practicing physicians and the pharmacies and libraries of over 4,000 hospitals throughout the United States and its possessions.”

On page 464 is pharmaceutical giant Eli Lilly’s entry for DES, which I’ve scanned and inserted below. Several other manufacturers have their own branded version of DES (for instance, Boyle & Co’s “Hi-Bestrol” DES in 25mg uncoated tablets, for threatened and habitual abortion, supplied in bottles of 100 and 1,000). However, I will concentrate on Lilly’s entry, since they were the major manufacturer and distributor of the drug, and have provided a lot more detailed directions for prescribing the drug than the other manufacturers.

Uses and Dosing for DES According to its Manufacturer

DES Dosing 1953 — Figure 1. DES dosing from 1953 Physician’s Desk Reference.

Lilly specifies a variety of uses for DES: Menopause, “senile vaginitis”, painful engorgement of breasts, functional uterine bleeding, carcinoma of the prostate, and to prevent “accidents of pregnancy” (miscarriages). In addition, they helpfully provided a recommended dosing schedule, based on the one devised by Drs. George and Olive Smith were two of the chief proponents of the use of DES to prevent miscarriages. The dosing schedule involves a progressively increasing exposure to the drug, starting at 5mg per day, and progressively increasing as the pregnancy continues until it reaches 125mg per day in week 35 (I guess because, after week 35, the baby is sufficiently well developed that it doesn’t matter if it is born early).

High Dose DES and the Male Fetus

DES is one of the most powerful estrogens ever developed, and even 5mg represents a high dose. You can tell that by the way most of the other recommended uses involve doses considerably smaller. Treating the symptoms of menopause, for example, involves doses of 0.1 to 1 mg per day. Treatment of prostate cancer (through chemical castration) involves a starting dose of 3mg per day, and a maintenance dose (once testosterone suppression has been achieved) of 1mg per day.

Particularly during the later stages of prenatal development, a male fetus whose mother was given DES according to this schedule was being exposed to many times the dose of DES required to cause complete suppression of testosterone production in an adult man. This is very important, because male development, and masculinization of the brain, are driven by the action of testosterone produced in a male fetus’s testicles. Prevent testosterone from being produced, and a genetically male fetus will develop as female instead of male, despite the Y chromosome. This was easily demonstrated by conditions such as Swyer’s syndrome and Complete Androgen Insensitivity Syndrome, in which a failure to produce testosterone or a failure to respond to the hormone, results in a person who is genetically male but physically female.

The conventional causes of intersex all tend to act throughout prenatal development. What I believe has happened with DES is that it has caused a form of intersex, but one that is different from any of the usual causes of intersex because it allowed relatively normal male development to take place during the first trimester, but from the end of the first trimester onward, DES exposure was high enough for testosterone production to become profoundly suppressed.

As you can see from the table, by the end of the first trimester, the dose had already reached 20mg per day and was still climbing. Presumably, the placenta provided some protection from the drug, or an early-stage fetus is more resistant to chemical castration by DES than an adult man because 20mg is already several times the induction dose for chemical castration of prostate cancer patients.

Male Genital Development

In the figure below, is a chart from an endocrinology textbook showing a timeline of events associated with male physical development. Notice that male external genital differentiation begins in week 7 and has finished by the end of week 12.

During the time genital differentiation is taking place, the main things going on in the brain are very rapid cell division and migration of those cells to their final position in the brain (which is often far distant from where they formed).

fetal brain development — Figure 3. Fetal brain development. Andersen, S.L., 2003. Trajectories of brain development: point of vulnerability or window of opportunity?. Neuroscience & Biobehavioral Reviews, 27(1), pp.3-18.

The first elements of the permanent structure of the brain don’t start to be built until about 16 weeks after conception, by which time some brain cells have reached their final position and can start to form permanent connections with other brain cells (“Axonal/Dendritic outgrowth”). I’m guessing that there are two ways of wiring up brain tissue: a male way and a female way, and if there isn’t testosterone present during the time axonal and dendritic growth are taking place, you get the female version.

A process of programmed cell death starts soon after that, which may also be important for whether you end up with a male or female brain. Perhaps certain cells generate aggressiveness and competitiveness, and they only stay alive when excess brain cells are being removed if there is testosterone present. I look at the way men’s faces light up when they’re watching competitive sports, and it’s pretty obvious that they’re experiencing something that I cannot. It makes me think that there could be cells in their brains that generate that “joy of sport”, which were culled from my brain because there wasn’t any testosterone present when their thumbs up or thumbs down moment arrived.

From these two diagrams, it is evident that the first trimester is the key time for genital development, while brain development with regards to gender comes much later and corresponds with the ever-increasing dosages of DES. With these progressively increasing doses, along with the known effects of synthetic hormones on brain development, a good argument can be made that DES may have produced people who are genetically male and look male but have female brains. From talking to people with a known or suspected history of DES exposure, it certainly looks like that is what happens.

DES was used somewhere in the region of 10 million pregnancies worldwide. The schedule published in the PDR wasn’t used in all of them by any means, but it was the manufacturer’s recommendation, and many doctors must surely have followed that recommendation. This raises the prospect that there could well be several million people alive today who look male but have female brains, as a result of the use of DES.

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This article was published originally on December 12, 2017.

Maternal DES and Male Sexual Development

by Hugh Easton

Published on November 30, 2021

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In the course of trying to figure out why I have certain symptoms normally associated with intersex conditions, but do not fit the criteria for any of the conventional genetic causes of intersex, I have stumbled across what appears to be a gigantic medical and pharmaceutical industry disaster that has been quietly unfolding ever since WWII. This post is my latest attempt to bring the problem to wider public attention.

DES: A Hormone for Every Ailment

In the years during and immediately after WWII, rapid advances in chemistry suddenly made it possible to produce man-made versions of many of the hormones that occur naturally in the human body. Hormones control a wide range of biological processes involved in the day to day running of the human body, and are also key drivers of the development and maintenance of masculine and feminine attributes.

Doctors and the pharmaceutical industry quickly realised that 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 animal experiments were performed.

The earliest of these substances was an artificial estrogen called diethylstilbestrol (or DES). DES was developed by a team of chemists in the UK in 1938. It is a completely man-made substance that has a chemical structure unrelated to naturally occurring estrogens. Nonetheless, the DES molecule has a similar shape to natural estrogen molecules, binds really well to estrogen receptors and acts as an extremely potent estrogen (one of the most powerful ever developed). Furthermore, it is active when taken by mouth, and it is comparatively easy to synthesize, so can be manufactured in bulk very cheaply. DES had all the right characteristics to become a blockbuster drug.

Because it was developed using public funds, DES was never patented. The people who developed it hoped that, by making the secret of its manufacture freely available, it would make a low cost source of estrogen available to women who needed it. However, US pharmaceutical giant Eli Lilly spotted a moneymaking opportunity, and quickly made DES their own, becoming the main manufacturer and distributor of the drug worldwide throughout the time it was used as a medicine

With this new drug in their armory, Lilly needed to find uses for it. One of the first uses they came up with was in pregnancy, as a treatment for preventing miscarriages and premature births. Their theory was that one main cause of miscarriage was inadequate hormone production, and that by supplementing a woman’s own hormones with DES, she would be less likely to miscarry. Never mind that the animal research showed no reduction in miscarriages,

“Dodds was always against the automatic prescribing of estrogen for any reason. He was sickened when he first heard about the work of Dr Karl John Karnaky in Houston, the first to use DES widely to “prevent miscarriages”. Dodds sent Karnaky a study that he himself had performed, showing that in rabbits and rats, the drug caused miscarriages.” (p37 of Barbara Seaman’s “The Greatest Experiment”)

More importantly, there was a whole series of experiments carried out between 1938 and 1941 at Chicago’s Northwestern University (here, here, here) showing that DES causes female development in male rat fetuses!

Consequences of Maternal DES

Undeterred, Eli Lilly pressed ahead, and through an aggressive marketing campaign and with a bit of arm twisting at the FDA, soon had DES licensed as a wonder drug for preventing miscarriages. Between 1940 and about 1980 (by which time it had largely been withdrawn from use as a miscarriage preventative), DES was used in somewhere in the region of 10 million pregnancies worldwide . In the US, it is estimated that 4.8 million children were exposed prior to 1971 when the FDA withdrew its approval, although doctors continued to use it off-label for several years after (p14 “DES Voices”, Pat Cody).

“It is estimated that DES was prescribed to between 2 and 10 million pregnant women world-wide as pills, injections, suppositories, and creams to prevent miscarriage between 1947–1971 … The exact number of women/fetuses prenatally-exposed to DES world-wide is unknown (IARC 2012). The majority of reports of DES use are from the U.S. where it is believed that between the 1940s and 1970s, 5 to 10 million people either consumed DES during pregnancy or experienced in utero exposures (IARC 2012). DES use was also popular in Europe and Australia, and like the U.S., many women did not know that they were taking DES. Therefore, estimated numbers of people reporting exposure during pregnancy or in utero are around 300,000 in the United Kingdom and 200,000 in France (Harris and Waring 2012).”

DES Daughters

The “DES daughters” from those pregnancies have since been acknowledged to have suffered all kinds of problems as a result of their exposure, including: very high rates of several kinds of cancer; infertility; abnormalities of their internal reproductive organs; several times greater risk of miscarriage and ectopic pregnancies; and various other health problems, including autoimmune disorders, osteopenia, degenerative disc disease, endometriosis, premature menopause, the list goes on and on. Everyone I have talked to who was prenatally exposed to DES seems to have health problems of one kind or another attributable to their exposure.

DES Sons

In contrast with the daughters, the official line has always been that the “DES sons” suffered virtually no ill effects as a result of their exposure. Based on what I’ve seen since first finding out about DES in 2011, that is not true at all, and in fact what it has done to us is exactly the same thing it did to the rats at Chicago’s Northwestern University: it caused us to develop as female instead of male during the time it was being administered.

Under the standard dosing schedule, increasing doses of DES was given to women with doses of across pregnancy reaching a 125mg in the last month of pregnancy (Physician’s Desk Reference, 1953). As a result of this graduated hormone exposure, we might expect relatively normal male development during the first trimester, but predominantly female development during the second and third trimesters. The first trimester is when genital takes place and physical sexual attributes develop. During the second and third trimesters, the main things still ongoing as far as development is concerned, is brain development. With this graduated dose of synthetic estrogens, we would expect relatively normal genital development although there is emerging evidence of alterations here too, but feminized brain development. In other words, with DES sons, we see a person who looks male but whose brain has predominantly or overwhelmingly, in a fair number of cases it seems, developed as female. The way this tends to manifest itself later in life is as a person who everyone regards as male, but who has a strong inner sense of being a woman.

Other common effects associated with DES exposure in males include subfertility or infertility, and hypogonadism (chronic below normal male testosterone production). I suspect this may also be a big risk factor for testicular cancer, however, this is unproven. All the genuine research into DES effects on males appears to have been discontinued by about 1980, and the total number of people studied is too small to assess cancer risk.

In Utero Synthetic Progestins

DES isn’t the only man-made hormone with gender bending properties to have seen widespread use during pregnancy. There is a class of hormones called progestins (which are all man-made versions of the hormone progesterone), that have also seen extensive use for miscarriage prevention. The first progestins were actually derivatives of testosterone. Although they act more like progesterone in adult women, in female fetuses they turned out to act more like testosterone. Female babies who had partially developed as male were being born throughout the 1950s as a result of progestin exposure. I have found a number of papers all published around 1960 reporting on cases of “progestin induced virilization”, so that appears to be when the medical community first realized there was a problem with these drugs. How long these androgenic progestins continued beyond this point I don’t know, nor do I know how many pregnancies they were used in in total. However, in her book “DES: The Complete Story”, the author, Cynthia Laitman, describes how she was given an androgenizing progestin alongside DES during her pregnancy in 1969, so it appears these gender bending drugs were being used throughout the 1960s too.

Unlike DES, progestins were never withdrawn. They are the main ingredient in birth control pills and other forms of hormonal contraception, and taken by several hundred million women every day for contraception. In fact some progestin formulations are still used for miscarriage prevention (allegedly these are non-androgenizing types of progestin, however, I think there’s a big risk they could be inducing female brain development in male babies).

In the course of trying to find out about the effects of DES on the unborn child, I came across a group of people whose babies were harmed by another hormone-based medicine, a drug called Primodos (marketed as Duogynon in Germany). A similar drug, called Gestest, was marketed in the United States. Here, the exposure occurred very early in the pregnancy, during the time organogenesis and limb development is taking place in the fetus, and before the process of sexual development is underway. As a result, the main effects have been severe, thalidomide like disabilities rather than abnormalities of sexual development (although, at least one member of their Facebook group had a Primodos exposed brother who was trans identified).

As with DES and the androgenizing progestins debacles, the pharmaceutical industry has been given a free pass by the governments of the countries involved, and the whole thing swept under the rug. An important fact about Primodos is that it contains exactly the same hormones as are used in birth control pills, the only difference being that the dose is higher.

A third group of people I’ve come across whose lives have been blighted by prenatal exposure to synthetic hormones, are in Hhorages France . The main issue this group is trying to highlight is that many of their hormone exposed children later committed suicide or developed serious psychiatric illnesses (although reading some of their published research, it appears that many of the children have intersex related abnormalities too).

My hope is that by alerting people to the harm so many have suffered as a result of being exposed in the womb to medically prescribed hormones, I can help to prevent such exposures from taking place in the future. I am also hoping this post and my Facebook page, Protect the unborn child from synthetic hormones, will help gain greater public acceptance for the transgender community; a much maligned group of people who, through no fault of their own, were born with brains that do not properly match their biological sex.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on December 5, 2017.

Hormone Treatment During Pregnancy and Gender Variance in Later Life

by Hugh Easton

Published on November 3, 2021

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For as long as I can remember, I’ve always had an unusual partially feminine gender identity, but until recently I never consciously acknowledged it. Then, a couple of years ago I realised that, although at a conscious level I identify as male, my body language, my pattern of arousal and orgasm, and my instinctive social behaviour are all very much more like what you’d typically see in a woman rather than a man. In addition, I appear to be suffering from secondary hypogonadism (i.e. my brain regions that control hormones aren’t working correctly), and I have a “eunuchoid” body structure, which indicates that my testosterone production has been below normal all my life.

Is Being Transgendered Just One of Those Things?

Although it never became my career, as a student I excelled at both chemistry and biology, and I’ve retained an amateur interest in the sciences ever since. Most people seem to assume that being transgendered is “just one of those things”, but I resolved to use that background in science to try and figure out whether there was an actual physical explanation for it. Accordingly, I tried to discover as much as I could about sexual development in the unborn child, and the kinds of things that can go wrong with that process.

Sexual Blueprints

Our sex-determining chromosome, the Y chromosome, is far smaller than any of our other chromosome and only has a few dozen functional genes on it. Basically all the Y chromosome does is to tell your undifferentiated gonads to turn into testicles (without it they’ll turn into ovaries instead). All of the genetic blueprints for actually building a male or female body are located elsewhere in your genome, so everyone has the full set of instructions for both sexes.

By default the “female” instructions are what get followed during fetal development, but if there’s testosterone present, the “male” instructions will be followed instead. Ordinarily this system works quite well, and you’ll develop as one sex throughout the pregnancy (which one depending on whether you have testicles churning out testosterone or not).

An Endocrine Disruptor

What appears to have happened in my case is that the pregnancy was no different from that of any other male baby, except that partway through the second trimester, something catastrophic happened that severely disrupted my endocrine system, so that for a few weeks I wasn’t producing any testosterone. Following that, my endocrine system recovered and everything went back to normal for the remainder of the pregnancy. The result is that I was built using the instructions for male development for most of the pregnancy, but during the time I wasn’t producing any testosterone, the instructions for female development were followed instead. That seems to have happened after all my physical development had completed, but very early in the process of wiring up my brain’s permanent structure (all the things that are affected seem to be associated with evolutionarily ancient parts of the brain, which points to the period of female development having happened early on in the process of wiring up my brain).

Based on when genital development takes place and when the process of building the permanent structure of the brain begins, I was able to work out that whatever it was must have happened somewhere around 16 or 17 weeks after conception, at or very soon after the time my mother would have first felt me moving inside her. Knowing what she was like when I was younger, my immediate thought was that she must have had a depressive episode, decided that she couldn’t cope with another child so soon after the first, and taken an overdose of something in an attempt to bring on a miscarriage.

A DIY Abortion That Didn’t Take

A bit of snooping on maternity forums soon revealed that the first thing most unhappily pregnant women contemplating a DIY abortion seem to think of is an overdose of contraceptive pills. I was able to subsequently confirm that my parents were using birth control pills for contraception at the time – the high dosage first generation ones. There was also something otherwise completely inexplicable that happened later in my childhood, which makes me think she must have been hiding a guilty secret along those lines.

My mother passed away in 2010, and in a way I’m glad that happened before I discovered any of this, because I would have been angry with her and she didn’t deserve that. She did her best to be a good mother to me and to all her other children, and I don’t hold her responsible in any way for what happened. I can’t blame my father either. He lost 3 brothers during his childhood and then his first wife died on their honeymoon, so I can understand why he became so obsessed with the idea of having a large family.

Brain Sexual Identity and DES

One further thing that made me think an exposure to artificial female hormones is the cause of my conditions was reading in the book “Brain Sex” about a pattern of behaviour commonly shown by teenage boys whose mothers were given treatment with a drug called diethylstilbestrol or DES in an attempt to prevent miscarriage . The boys in the study were typically very shy, socially withdrawn, had low self esteem, were regarded as sissies, bullied, ostracised by their peers, with no ability to fight back when attacked and no interest in sport. The authors of the book described it as “feminized behaviour”, and my teenage years matched it so closely it could have come straight out of my school report!

The main hormonal component of the contraceptive pills my parents were using is norethisterone acetate, a progestin, whereas DES is an estrogen. What estrogens and progestins both have in common is that they are female hormone derivatives, and are basically completely incompatible with masculinity. Both types of hormone have the ability to disrupt testicular hormone production at quite modest doses, well below those commonly used for medical treatment for women.

DES was for many years used to chemically castrate men suffering from hormone-sensitive prostate cancer, while progestins are commonly used for chemical castration of sex offenders and transsexuals. If they also suppress testosterone in a male fetus, then any use of them during a pregnancy of a male child carries a risk of creating a baby who developed as the wrong sex for part of the pregnancy. This is what I think happened to me, and to the DES sons.

For nearly two years I’ve been trying to find out as much as I can about DES sons, reading their personal accounts of how they’ve been affected and chatting with them online. Among the ones I’ve had contact with or whose life stories I’ve read, there seems to be a very high incidence of both intersex-related genital abnormalities and gender dysphoria. As a group they seem to commonly experience many of the same problems I have (a genital abnormality, feminized behaviour as a teenager, low testosterone and problems with hormones, gender variance). The key difference is that on the whole they seem to be far more psychologically female than I am (which is exactly what you’d expect, considering that their exposure was for a much larger part of the pregnancy than mine). I think it’s quite likely that for most of them, their testosterone production was completely suppressed and they were developing as female throughout the time their mothers were on the drug!

DES and all other estrogens were withdrawn from use in pregnancy 30 years ago, however, treatments for prevention of miscarriage, based on progestins rather than estrogens, continue to be used to the present day. One of these involves a progestin called hydroxyprogesterone caproate, given as a weekly intramuscular injection of either 250mg or 500mg, starting 16 weeks into the pregnancy – just around the time I think my hormone exposure occurred. The difference is that this treatment continues to be administered for the remainder of the pregnancy. If this drug does suppress testosterone production in a male fetus, then it’s hard to imagine a treatment better suited to creating as baby with a male body but a female brain! I’m fairly sure that if you gave an adult man 250mg per week of this drug, his testosterone production would be seriously impaired. Why wouldn’t the same happen to a male fetus?

Females Affected Too

In this article, I’ve only been looking at the effects of artificial sex hormones on a male fetus, however it’s likely that, under the right circumstances, a female fetus could be affected too. This could happen if the external hormone mimics the action of testosterone (e.g.progestin induced virilization), or if it disrupts endogenous hormone production in a way that causes excessive androgens to be produced (hyperandrogenism).

Postscript: This article was published previously September 2013.

DES Tears Flow Across Each Generation

by Karen M. Fernandes

Published on February 10, 2021

5006 views

DES Info: “The fear is still there and the tears are still flowing” #TheDESTragedy

It’s interesting watching our roles within the family change over time. I saw my mother cry during those long and difficult years when my compromised reproductive system worked so badly. Now, I find myself on an emotional tightrope worrying about the future effects of DES exposure on myself, my son and my granddaughters who are also members of the DES community.

Worrying seems to go with being a DES Daughter. My first real jolt came when excitement at my first pregnancy which turned to sadness upon learning it was an ectopic pregnancy. In the early 1970’s, we didn’t know of the increased ectopic pregnancy risk for DES Daughters, but I always wondered. Years were spent trying to get pregnant again and I underwent additional surgeries trying to help my fertility and chances of becoming pregnant.

The doctors felt that I would never be able to get pregnant. It was not easy but I was granted a “miracle baby” and my son was born after a difficult pregnancy.

We had wanted more children, so we tried again, only to experience the heartache of a second ectopic pregnancy. I hadn’t felt well but doctors couldn’t find a problem so they sent me home. There were no ultrasounds then so we didn’t know how serious things were until the Fallopian tube ruptured and I almost died. I remember waking up on a ventilator, knowing what had happened and crying along with my husband, mother and father.

You can only imagine how my Mom felt then. She was angry and mad at the DES she’d been prescribed. Mom and I both cried long and hard during my recovery as we realized the loss of both ovaries and Fallopian tubes meant I’d reached the end of my fertility at the age of 26. It had been my dream to have another child and it was gone. I think the hardest to overcome was the loss of not being able to have another child and to see my Mom’s grief along with my own.

DES daughter

But I was alive – with a son to raise. Through the years my son has remained healthy, however, I still worry. He is a DES Grandson and we don’t know whether there are problems yet to come. I have to worry for my son because he doesn’t do it himself. He’s a typical guy and tells me not to be concerned. I urge him to pay attention to his body and get the health screenings he needs as a man. I think most mothers worry about their sons, but being a DES Daughter, with a DES Grandson, exacerbates the situation. His life has also been affected by his and his wife’s own pregnancy losses. Any connection to DES? One wonders and my fears are still there.

And then there’s great joy in my life. My son and his wife welcomed two daughters into their family. I melt when they run into my arms and seem so perfect. But in my quiet moments I have been known to cry when I think that they are DES Great Granddaughters and might have also been affected by this drug. It’s just too early to know for sure, so my fears are there.

DES across generations

How do I handle this? By staying informed about DES and being an advocate for the DES exposed. We must be educated, aggressive and assertive when dealing with our health care. Don’t be shy, read all you can. If you read the Facebook page DES Info, you will know more than your doctor.

Case in point – after my hysterectomy, I did not feel that I needed any further Pap tests. But I learned from activist Pat Cody, that what holds true for unexposed women does not necessarily apply to DES Daughters. So I do take care of myself and have yearly Pap/pelvic exams and mammograms. All DES Daughters should, whether or not they’ve had a hysterectomy. Of course, I worry about cancer – now even breast cancer – so the fear is still there and the tears are still flowing.

But I am also taking action. I pay attention to DES for myself, my son and my granddaughters. We need more research and information for DES sons and grandsons along with the third generation.

The word needs to get out that DES exposure did affect the fetus’s skeletal structure. Research has proven this. I know it has affected mine because I am dealing with osteoporosis and brittle bones.

In quiet moments I’m sure we’ve all been overwhelmed with emotions. But nothing feels better than rising up and doing something positive. You can get involved by advocating for the DES exposure and to push government agencies to do more.

The DES Tragedy still continues. We now know that it is in the animal industry in Kenya and women are taking DES intended for the cattle. We have also heard that this drug is also being used in China and India.

As a DES daughter, like many of the exposed around the world, we are still awaiting an apology for this tragedy.

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This article was originally published on September 5, 2017.

From DES to the Pill: Are We Doomed to Repeat History?

by Mike Gaskins

Published on November 13, 2017

3267 views

“The doctor wouldn’t have given it to me if he thought it was dangerous, right?”

My wife asked this salient question as we discussed the pros and cons of The Pill. It sent us both into deep reflection. Everything we read said The Pill was dangerous, but the doctor had acted like they should come in a Pez dispenser. To this day, I’m not sure where the cognitive began and the dissonance ended.

The DES Debacle: Origins of Obstinance

Doctors are generally dogmatic, but their nearly universal laissez-faire attitude toward The Pill seems particularly paradoxical when you study the scope and seriousness of its side effects. How can doctors believe that The Pill is safe, when tomes of studies suggest otherwise? Research links The Pill to everything from breast cancer and strokes, to Crohn’s Disease and lupus. To understand where we are and how we got here, it’s important to study the journey that brought us here.

By 1970, the current dogma that ‘The Pill is safe’ was well rooted in the medical community. However, enough doctors expressed concerns that Senator Gaylord Nelson decided to hold Congressional Hearings on the matter. The big three networks covered the hearings extensively, which caused great anxiety among women taking The Pill — and even greater anxiety among pill proponents, who subsequently demanded more ‘pro-pill’ doctors be included.

Senator Nelson took umbrage with their complaints, noting that all but one of the previous doctors had actually been ‘pro-pill’ to some extent, but all had reservations about its complications. Nonetheless, many of the doctors in the second round of hearings seemed more decidedly ‘pro-pill,’ including Dr. Kenneth Ryan, who stated,

I know of no information that indicates that biological properties of the estrogens used in the contraceptive pill are any different than stilbesterol for which we have at least 30 years of clinical experience…(Competitive Problems in the Drug Industry, Ninety-First Congress, Second Session, Page 6541)

Very reassuring… Unless you were actually familiar with the 30-year history of stilbesterol, also known as diethylstilbestrol (DES). Sir Charles Dodds discovered DES in 1938, and rushed it to market in the public domain. The English doctor bypassed the patent process hoping it would discourage the Nazis from further tests on women prisoners in their development of ethinyl estradiol (Barbara Seaman, The Greatest Experiment Ever Performed on Women; page 36).

From DES to the Pill

Despite his noble intentions, Dodds soon regretted the decision. Without a patent, drug companies around the globe were free to produce DES. He never expected that synthetic hormones would be given to healthy women, and was horrified that doctors were prescribing it as hormone therapy for natural menopause.

You Can’t Put the Hormones Back in the Tube

Even worse, Dodds soon learned that an American doctor named Karnaky had begun blazing a new trail – doling out DES to ‘prevent miscarriages’. Alarmed by the news, Dodds sent him a study he had personally performed, which showed that the drug actually caused miscarriages in animal subjects. It didn’t deter Dr. Karnaky or the many doctors who followed his lead. (Robert Meyers, D.E.S. The Bitter Pill; pp. 56-73)

Dodds began to feel like he was fighting a monster that he himself had unleashed. He was most concerned about how his discovery could affect certain cancers. He sent DES samples to the newly formed National Cancer Institute in the United States, and urged them to conduct tests and notify doctors.

Dodds wasn’t alone. The Council on Pharmacy and Chemistry warned,

…because the product is so potent and because the possibility of harm must be recognized, the Council is of the opinion that it should not be recognized for general use at the present time…and that its use by the general medical profession should not be undertaken until further studies have led to a better understanding of the functions of the drug. (Barbara Seaman, The Greatest Experiment Ever Performed on Women; page 44)

The concerns sent murmurs through the medical community, and many doctors began experimenting with lower doses of DES. By 1940, the editors of the Journal of the American Medical Association (JAMA) felt compelled to add theirs to the litany of warnings:

“It would be unwise to consider that there is safety in using small doses of estrogens, since it is quite possible that the same harm may be obtained through the use of small doses of estrogen if they are maintained over a long period.” (JAMA, April 20, 1940)

In 1959, the FDA determined the link to side effects (including male breast growth) was sufficient to ban poultry farmers from using DES as a growth hormone. However, the widespread use of DES in humans continued. In fact, it had become standard medical practice by the time Dr. Ryan assured Congress that The Pill was just as safe as DES – showing how medical dogma often trumps scientific evidence.

The greater irony of Dr. Ryan’s statement materialized one year after his testimony, when researchers first linked a rare vaginal cancer to the daughters of women who received DES during pregnancy. The FDA reacted strongly, listing pregnancy as a contraindication for DES use.

Consumer Groups Take the Lead

You would expect this to be the beginning of the end for DES. Shockingly, the medical community responded with indifference, continuing to prescribe DES for a variety of ‘off label’ uses, including as a morning-after pill, to catalyze the onset of puberty, and the old faithful, hormone replacement therapy. (Robert Meyers, D.E.S. The Bitter Pill; page 185)

It took nearly a decade of passionate effort from consumer movements like DES Action to convince doctors to (mostly) abandon DES. Dozens of lawsuits were filed; some were settled; and some are still pending. There is evidence that the harmful consequences could now be affecting a third generation of DES victims.

The current Director of Epidemiology and Biostatistics at the National Cancer Institute, Robert Hoover, M.D. oversees the DES Follow-Up Study to track the ongoing repercussions. With identifiable problems now affecting the grandchildren of women who took DES, the disaster hasn’t yet moved into the past tense of our nation’s history. Despite that, Dr. Hoover says:

There’s essentially a whole generation of medical students who don’t know the story. The story has such powerful lessons that I think that’s a tragedy…For about 20 years now, when I standardly ask in my general epidemiology lecture… how many of you have heard of DES, nobody raises their hand.

Sidney Wolfe, M.D., who headed up Ralph Nader’s Health Research Group offered this perspective,

DES is an excellent example of how drug companies behave, how they take advantage of the ways doctors act, and how they make millions of dollars by ignoring evidence of a drug’s harmfulness, by failing to get evidence that it is effective, and then by marketing a product that plays on fears and misconception. (Robert Meyers, D.E.S. The Bitter Pill; page 208).

In just 20 years, the American Medical Association moved from “It would be unwise to consider that there is safety in using small doses of estrogens…” to embracing the release of insufficiently tested hormones as birth control for millions of women. I’m leery of trusting a dogma founded on such an erratically moving target. In their defense, the dogma really hasn’t moved much in the decades since.

Today, the medical community assures us The Pill is the most researched drug ever. Sorry doc, that reassurance just doesn’t ring true. At this point, it feels more like a phrase learned by rote than a statement based on any kind of empirical evidence. Unfortunately, it’s not the only hollow mantra that should raise a red flag when it comes to hormonal contraceptives. I will discuss how the medical community responds to scientific studies in my next post, The Spin Doctor’s Prescription for Birth Control.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on Hormones Matter on August 31, 2016.

DES – The Drug to Prevent Miscarriage Ruins Lives of Millions

by DES Daughter

Published on February 23, 2017

32443 views

Let’s rewind time. We’re in 1970. My mum, like millions of other women, puts all her trust and last hopes of carrying a successful pregnancy in the hands of health professionals. She accepts to take a drug recommended and prescribed in good faith by her doctor without knowing that years later it would have devastating consequences not only on her health but the health of her daughter and possibly her grand-children. She takes Diethylstilbestrol (or DES in short), the first synthetic man made female sex hormone (oestrogen) widely prescribed for public use in the mistaken belief that it would prevent miscarriage and loss.

Now let’s fast forward. We’re in 2001 three decades after my mum took DES. I’m in a hospital ward anxiously waiting for the results of a scan. I’m pregnant. “We’re so sorry, but you know 1 out of 5 pregnancies end in miscarriage. You should try again” I’m told. My head is spinning. What did my Mum said again? DES, yes DES, I remember now. She mentioned when I was just a teenage girl that research had confirmed that the drug taken throughout her pregnancy to prevent miscarriage was responsible for all sorts of dreadful health issues including a rare form of vaginal cancer, infertility and high risks pregnancies. What if this was responsible for the loss of my baby, I ask. “DES? What is DES? Never heard of it!” replies the consultant on duty that day. ”If you keep miscarrying, we’ll investigate further” he adds.

I don’t listen and seek help and advice from an organization founded by a mother who had been prescribed this drug and advocates for the many families affected by DES. A Professor, expert in fertility treatment, confirms a congenital uterine malformation typical of DES exposure and confirms that I’m a DES daughter, one amongst millions of other women whose mothers took Diethylstilbestrol during pregnancy.

If you were born or pregnant in the US between 1938 and 1971, and until the mid-’80s in some European countries, you may have been exposed to DES too and you may suffer from the consequences of this drug without even knowing it. Diethylstilbestrol has put the mothers prescribed the drug, their daughters and sons exposed in utero, and potentially their grandchildren due to the trans-generational effects of this synthetic hormone, at risk for serious health problems including but not limited to: structural damages in reproductive organs, high risk pregnancies and miscarriage, cancer, infertility and possible immune system impairment. Many other suspected effects are still awaiting further research but funding is critically missing.

Often referred to as the “Silent Thalidomide” by the media, diethylstilbestrol is considered as the world’s first drug scandal. Despite evidence of its ineffectiveness and danger, it continued to be prescribed to pregnant women beyond 1971 when the first link between DES and a rare form of vaginal cancer (clear cell adenocarcinoma) was formally established in Boston, Massachusetts.

Even though this drug was given to pregnant women decades ago, it affects and continues to affect millions of families today and possibly for many years to come. Yet, diethylstilbestrol has been and still is a well-kept secret, a taboo subject not only in families but within the medical community too.

No drug manufacturers, health authorities, nor governments have ever taken responsibility for the long term health side effects of this drug.

Don’t Pharmaceutical companies have a responsibility to their consumers to provide a product that is safe?

Four sisters recently filed a lawsuit against drug manufacturer Eli Lilly. They feel that their breast cancer was a direct result of Eli Lilly’s negligence. Eli Lilly has never accepted responsibility nor apologized for the DES tragedy, even though the company has paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure. The Melnick sisters reached a settlement with the drug company a few weeks ago, but Eli Lilly has not accepted any responsibility. Outraged by Eli Lilly’s failure to fess up on DES, Patricia Royall, a plaintiff in one of the 72 pending DES breast cancer lawsuits in Boston federal court and the District of Columbia, is now calling on the general public to sign a petition urging the drug manufacturer to apologize for the DES tragedy. From all corners of the globe, Australia to France, the UK to the Netherlands, Ireland to the USA, DES victims are crying out for justice.

Diethylstilbestrol is a world drug disaster yet very few people know about its tragic health consequences or have even heard about it. Public health awareness campaigns are vital to reaching out to the millions of people who have been exposed to this harmful drug. People who are not aware of their exposure to DES are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result. It is equally important to educate the next generations of health professionals who have never heard of DES so they can provide adequate care to DES victims for years to come.

DES Daughter DES is not something of the past. People who have been exposed to this drug years ago are battling with health issues and fighting for their lives as I’m writing this blog post. Who knows what health problems the grandchildren of the mothers who were prescribed this drug will have to deal with as they grow up. I want my daughters to receive adequate medical care and monitoring if they ever have to suffer the consequences of this drug. This is why together with my husband we support the great work done by the very few International DES Action Groups who are providing valuable information and are advocating for the DES victims.

If you’re concerned that you may have been exposed to DES, please don’t let doctors dismiss your concerns. Contact your local DES Action Group for professional advice and guidance. Connect with me and other DES daughters via my blog: DES Daughter Network and my website: Journal of a DES Daughter. You have the right to know.

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This article was published previously on Hormones Matter in February 2013.

My Journey from DES Advocate to Author

by Judith Barrow

Published on June 20, 2013

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My name is Judith Barrow and I am an author. I have been connected with DES Action UK and USA since I heard a programme about Stilboestrol (Diethylstilbestrol in the USA) (DES) on the radio many years ago. I learned several years ago that a relative was affected by this drug.

The damage DES causes is very personal and as private person, she didn’t want anyone to know that she had been exposed to DES. So I became her front person. I did the research for her. I contacted the DES organizations on her behalf. What I found changed my life and led me to write a book. Here is my story.

DES and Endometriosis

I’d known for many years that my relative suffered with chronic endometriosis, and that she had anatomical deformities. Ultimately, it was discovered that she had a narrowing of the cervical canal which resulted in increasingly painful menstruation. Then I heard a Radio Four programme called ‘You and Yours’ which included an article on DES. I realized that a lot of the content applied to my relative.

I made the inquires for her. First to DES Action UK, which was still extant then (they folded last year due to lack of funds and support). I sent for their newsletter and went online. The more we read, the more we were convinced that she had been exposed in utero to Stilboestrol. Like many private families, her mother initially denied it. This caused family problems, so she didn’t pursue the issue any further.

The information she gained from the DES groups made her aware that she needed to have the annual cervical smear (the only specialists for this test for DES Daughters is in Ireland). The more research I carried out, the more aware I became of the damages DES had caused.

After a year of communicating with DES Action UK, I was asked to write an article appealing for DES Daughters and Mothers to come forward and tell their stories. It was hoped that the group would get more members and that, if more voices were heard, then perhaps the British Government would listen.

The stance of the Government is twofold; that those pregnant women who were prescribed the drug were given it so far in the past that to raise it as an issue now would only cause ”unnecessary concern.” They believed it was a problem to be discussed privately between the mothers and the drug companies. I disagreed.

Following the article, many women contacted me to tell their stories. Some were heartbreaking; one daughter had six miscarriages before giving up the struggle to conceive (she then, happily, adopted a lovely little girl). Another Daughter had too many health problems to list but amongst them she suffered from endometriosis, uterine fibroids, paraovarian cysts. It was no wonder she was depressed. Her mother wrote many letters to the Government. Ultimately the reply came back – “Thank you for your letter, future correspondence will be noted and filed but not responded to…” The mother cried when she told me. I was so angry for her.

But the DES Daughter story; the one I first came across when I knew of Stilboestrol and DES Action UK, that really affected me was from one of the initial members. I enclose part of the interview, and further comment, from the article in The Sunday Independent: Sunday 22 January 2012 (this decided me to self-publish the book; it gave credence and veracity to the story. It reads as follows:

Thousands of women could be at risk from ‘silent Thalidomide’

A drug intended to prevent miscarriage is blamed for causing cancer in the daughters – and possibly even granddaughters – of women who took it decades ago. By Sarah Morrison and Jaymi McCann

The first recorded “DES daughter” in Britain, Heather Justice, 59, from Jarrow, was 25 when she found out she had vaginal cancer and would have to undergo a hysterectomy and partial vaginectomy. Although she found records showing her mother had been given DES in the 1950’s, she was unable to bring a case to court – (in the UK, because she could not identify which manufacturer had produced the drug. However, a US lawyer did help her get some compensation there.
Also, she says –“it is impossible for anyone to find the manufacturer of the drug in this country, not just me, as it was never patented. It was the surgeon who performed my hysterectomy who asked my mother if she knew what she had taken. He knew it must have been DES because of the rare type of cancer I had. He was also the one who found her medical records with the generic name of the drug”:- added after this interview)
After years of fighting the legal system, she says she feels disillusioned. “One of the problems is that unlike Thalidomide, where you see the problem the minute the baby was born, women who took DES had healthy babies,” she says. “Problems were hidden until the teens and twenties, by which point we were forgotten about. When I asked my mum what she had taken, she didn’t even remember the name of the stuff. It is a complete and utter minefield.”…

It took almost nine years to research, to contact women from different countries and piece together a story. Although I am not a DES Daughter – and like many others in the UK still are – I was totally unaware of this drug, until that one radio show on DES. The more I discovered the angrier I became. That these women are still fighting for recognition, acknowledgement from the pharmaceutical companies after so long is a disgrace.

What is DES?

DES, a synthetic oestrogen, was created by Charles Dodds in the UK in 1938. It was expected to help prevent miscarriages. Years later, he raised concerns about DES but by then very few in the medical field were listening. Doctors prescribed Stilboestrol to pregnant women between the nineteen forties and seventies, believing it was safe. The women had no reason to doubt but, too late, they learned the horrible truth. Not only was DES ultimately proved to be ineffectual, it caused drastic damage to their children: An increased risk for infertility, vaginal/cervical cancer in young women and breast cancer in later life are but the start. Scientific studies continue add to the growing list of serious medical problems caused by exposure before birth. Hormones Matter has covered DES here, here and here.

Now researchers are investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. Millions around the world were exposed to DES, but this tragedy flies under the radar of general consciousness. I set out to change that. These women and men should not suffer in silence.

From that initial contact with DES UK, my life changed drastically. I have become an advocate for DES education, research and services. I wrote a book to publicize the depth of suffering women, their children and grandchildren exposed to DES experience, often silently. Ten percent of proceeds from the book sales go directly to DES research. I hope that my work will in some small way help change that.

To learn more about my book click: Silent Trauma.

To learn more about DES action groups: DES Action Groups Worldwide

DES sons

Discovering the Tall Girls: DES Action Australia

Untangling the Tall Girls Trials after Years of Secrecy and Denials

More about DES and Tall Girls Story

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