DES Miscarriage

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

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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

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

Maternal DES Exposure and Intersex Development in Males

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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

male genital development
Figure 2. Male reproductive development. Melmed, S., 2011. Williams textbook of endocrinology. Elsevier Health Sciences.

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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DES, Nazis, and American Industrialists

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DES is a synthetic estrogen-like compound developed in 1938 by English chemist Charles Dodd. German chemists under the employ of the Nazis were able to synthesize DES cheaply and easily from coal tar and used it to fatten livestock. There was a problem, however. The young boys who cared for the livestock, and thus were exposed to the chemical, developed swollen and painful breasts, a condition now called gynecomastia. This would be one of many indications that perhaps the drug was not as safe as proclaimed. The German solution to avoid this side effect was to have women care for the animals because they had breasts already, after all. An American scientist in the employ of several American industrial interests and with ties to German researchers during and after the war, concurred:

A drug effect of interest in relation to industrial hygiene is that of DES, the manufacture of which only female workers are employed, because untoward effects induced in males by the absorption of this material in the course of a day’s work. Boys develop a mammary swelling with such severe pain and pressure of a shirt cannot be endured. On the discontinuance of exposure the condition subsides spontaneously within a week or two. No sequelae have been reported and no abnormalities of the testes have been seen. On the other hand, older males develop some atrophy of the testes and some apparently temporary loss of sexual potency. This condition is said to have been cured by the administration of androsterone. Exposed women had no nausea or menstrual abnormalities.” The Secret History of the War on Cancer, pp 90.

Despite the early indicator that DES might not be safe, and without any other testing beyond the basic toxicology to determine lethality, it was approved by the FDA in 1941 for vaginitis and as an early hormone replacement therapy for menopausal women. It was later approved a variety of low estrogen indications. In 1947, the FDA approved its use in pregnant women with a history of miscarriage. DES had been used off-label for miscarriage prevention since the early 1940s, despite the fact that little evidence supported its use and animal studies indicated clear carcinogenic and congenital reproductive abnormalities in the offspring. Indeed, years before the development of DES, the relationship between synthetic hormones and several forms of cancer, were recognized. Nevertheless, the promise of pharmaceutical industry profit overrode any potential long term consequences of the drug.

After 10 years of widespread use and marketing, a double-blind, placebo-controlled study on the efficacy of DES was finally conducted. As one might expect, it was found ineffective in preventing miscarriage. In fact, women on DES had a higher risk of miscarriage. Later studies in the 1960s began detailing the adverse effects this drug. Nevertheless, despite mounting evidence of the dangers of diethylstilbestrol, it remained on the market and widely used through the early 1970s in the US and into the 1980s in some European countries. In the US alone, it is estimated that some 5-10 million women and their children were exposed to DES. Because the compound was never patented, 287 drug companies sold DES under a multitude of brands  and for an array of low-estrogen conditions.

Two decades after both the Germans and the English recognized that DES caused gynecomastia in the male farm hands, US reports of gynecomastia and sterility in US poultry workers were evident. As a result, the FDA banned it for use in poultry under the newly enacted Delaney Clause to the FDA 1958. It would be another 13 years before DES was banned during pregnancy and 20 years before DES was banned in cattle. That means that neither the evidence that DES was ineffective in the prevention of miscarriage but may actually increase risk, nor the evidence of congenital abnormalities and cross-generation cancer risks were sufficiently troubling to initiate its ban. DES was finally banned for use in cattle until 1979. It would be years after before it was removed from the food chain (if it even is now). “In 1980, half a million cattle from one hundred and fifty-six feedlots in eighteen states were found with illegal DES implants.” Even upon FDA’s decision to withdraw its approval of DES in cattle and feed, it did so on grounds of the procedural non-compliance of the manufacturers, while simultaneously maintaining the safety of DES, “because there is no evidence of a public health hazard.” Even now, despite its clear carcinogenic and teratogenic risks, it is still used in veterinary care.

DES represents just one of many pharmaceuticals marketed as safe upon the flimsiest of measures. It was a known carcinogen before its approval. By 1939, 40 papers had been published detailing its carcinogenic activity. Unfortunately, they were countered heavily by industrial interests with some 257 papers published within the proceeding two years touting its benefits. As is the case today, the influence of advertising to skew public opinion, whether the medical public or lay public, was intense and ultimately successful. Even though the evidence suggesting DES prevented miscarriage was highly controvertible, it was approved by the FDA and adopted wholeheartedly by the medical industry. Even when it was proven ineffective at preventing miscarriage in 1953, it was still prescribed regularly.

“…doctors continued to widely prescribe DES in normal pregnancies like ‘vitamins’ or ‘a little extra insurance.’ They continued because of the highly aggressive sales tactics of pharmaceutical representatives and because it was widely advertised in medical journals and the popular press. Influenced by the advertisements, and in their desperate desire to avoid miscarriages, women demanded DES.”

It was not until 1971, that the FDA finally recognized the risks. DES, like thalidomide, DDT, and other chemicals developed during this period, are often viewed through the lens of history as representative of a bygone era, when science and technology were yet nascent endeavors. I would argue that is incorrect. While it is true that science and technology have advanced significantly in recent decades, what remains steadfast are the cultural and monetary conflicts that motivate and define what is accepted as true in this field; and sadly, what is accepted as true is whatever industry tells us.

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This article was published originally on October 23, 2019. 

DES was Given to My Mom as a Vitamin

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I was exposed to DES before I was born. My mother was given the medicine while she lived in a Catholic maternity home in NYC in 1967. They told her it was a necessary vitamin, even though she did not have any issues with her pregnancy. Nobody told her what DES would do to me, her unborn baby. At the time of my birth, and towards the latter part of her pregnancy, she thought it was odd that her breasts didn’t swell and that did she produce milk. Nobody gave her an explanation. After suffering from postpartum depression, she was told they found adoptive parents for me. She was shattered and became even more depressed for years to come.

A DES Daughter

At 18, I noticed I didn’t have a menstrual cycle. I was brought to a gynecologist. She tried to complete an examination on my organs. I had to fight her off, since it was too painful. I was sent to a specialist in NYC who determined my birth defect. He completed an MRI, which at time (1987), showed an underdeveloped uterus. My fallopian tubes and ovaries appeared normal, but my vagina was smaller. I was told at age 19, if I chose to have children, it would have to be done through a gestational surrogate. This was shattering and I became depressed for many years. I had such a difficult time fitting in with peers. I felt so different like nobody could relate to me. I must be some kind of freak.

Believe it or not, I actually married. The man I married accepted me. He knew for many years of my DES exposure. He loved me unconditionally. Unlike many married couples who experience infertility after marriage, my husband already knew what he was getting into. One gift to come out of this horror for me, I found true love.

The Consequences of DES

The years progressed and medical science improved. In 2003, I underwent a laparoscopy which gave a more definitive diagnosis. It was the same as above, except they used term “floating uterus” and it was determined that I do not have a cervix. Again, I revisited that part of myself that felt like a freak, but I learned to accept my diagnosis.

It was medically determined that I was exposed to DES before I was born. I learned what made me feel like a freak was called a DES injury. I also learned that other women and even men were exposed to DES before they were born too. When I met my mother, we pieced together this tragedy, and it has been very painful for both of us. The DES injury will never come between my love for my mother. It was never an issue that drew us apart. Maybe this pain drew us closer. I prayed my whole life, I prayed, “Lord, if you can’t give me my own child, could you please give me the gift of meeting my mother.” The Lord granted me this gift.

In terms of my health, it has been good. The only medical issue I have is hypothyroidism. I never had my eggs frozen, but I still live with the fantasy that I will one day give birth. I will never part with that fantasy, and if someone out there thinks I am a freak for never giving up on that dream, it doesn’t hurt me anymore, because nobody is a freak for dreaming.

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This article was published originally on Hormones Matter in September 2013.

DES – The Drug to Prevent Miscarriage Ruins Lives of Millions

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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 DaughterDES 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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Dexamethasone During Pregnancy Increases Ovarian Germ Cell Death

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Dexamethasone or DEX, the synthetic corticosteroid that mimics the anti-inflammatory and immunosuppressant effects of endogenous cortisol, has been given to pregnant women who are at risk of delivering a child with congenital adrenal hyperplasia (CAH) for almost 30 years, despite the fact there are no data indicating either its safety or efficacy, and one study from Sweden suggesting such a high risk of adverse events and long term consequences, that the study was halted and the use of the drug was banned.

Similarly without evidence, physicians who specialize in vitro fertilization (IVF) are using DEX to prevent miscarriage. There is only one small and recent study suggesting that DEX may augment ovarian response and increase follicle production for egg retrieval. There are no studies showing improvement in fertilization, implantation or pregnancy rates, or even data showing it prevents miscarriage, its supposed purpose. Indeed, IVF physicians have embraced the myth of this miracle hormone, on perhaps no more than medical hunch.

Dexamethasone and Ovarian Germ Cells

A recently published study looked at the impact of in vitro – organ culture – exposure of fetal ovaries (obtained from recent abortions), and ovary germ cell development. What they found was Dexamethasone Induces Germ Cell Apoptosis in the Human Fetal Ovary. Remember germ cells are those that are handed down at birth from our parents that contain the genetic materials needed to form ovarian follicles (eggs) for women, sperm cells for men. We know that dexamethasone impairs genital development in males, but this is the first study to look at DEX and females – and they went right to the source, germ cell development.

Typically germs cells divide in a logical sequence that eventually results in oocytes or eggs for women or sperm cells for men. In some women and men, the cell division progresses unconventionally, as a result of epigenetic factors including the health and environmental exposures of our parents, even our grandparents. In utero exposures to medications, such as DEX, vaccines and other toxins can cause errors in germ cells. Germ cell division is very highly environmentally influenced and as such, it is not a big leap to think that fetal exposure to synthetic hormones such as DEX during germ cell division – weeks 6-20 of pregnancy, would have an impact on ovarian health. Indeed, it does.

Researchers found that when the fetal ovaries were exposed to dexamethasone in culture for only two weeks, the rate of germ cell death increased, the density or total number of germ cells decreased, as did the expression of one of the genes associated with germ cell survival. This was with only two weeks of exposure. In most cases, women at risk of having a baby with CAH are given dexamethasone continuously from nine weeks through the first trimester. Those pursuing IVF are given DEX preconception through the first 10 weeks of pregnancy, though at a reduced dose compared to CAH. In both cases, fetal exposure to dexamethasone is chronic, during the most critical period of reproductive organ development and germ cell division, a fact that seems to be missed with the purveyors of this drug.

What Happens When We Alter Germ Cell Development?

While there may be limited adverse effects in the moms given dexamethasone, their offspring and potentially even their grandchildren may have varying levels of altered reproductive and sexual development, including changes in the structure and function of the reproductive organs, but also, in the brain chemistry that supports gender identity. We don’t know, however, because there have been so few studies and so little recognition of the potential dangers associated with prenatal dexamethasone, or even with prenatal hormone exposures in general.

In male rodents, exposed to dexamethasone in utero, there are significant problems: reduced penis size, malformed genito-urinary tracts, undescended or malformed testicles and even testicular germ cell cancer. Until this publication, females, animal or human, had not been studied. The fact that they observed germ cell errors, leads one to speculate that later in life, perhaps similar to the DES daughters and granddaughters, these women too will experience the congenital uterine malformations and the complement of reproductive diseases, that include various cancers. At the very least, because of the increased rate of germ cell apoptosis – cell death – observed in the present study, the researchers speculate in utero exposure to dexamethasone will elicit a higher and earlier rate of premature ovarian failure in the offspring.

What becomes abundantly clear is that we ought to stop dosing pregnant women with drugs, especially those hormonal in nature, when we have no data supporting safety or efficacy. We ought to recognize that these substances cross the placental barrier and will affect fetal development. Given medical history over the last 70 years from DES, thalidomide and now, DEX, it is clear any changes in medical practice must be initiated by women themselves. There seems no impetus from medical science to investigate before medicating pregnant women.

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She Was Given DES and My Story Begins

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My story is not special other than it is my story. My mother, a Navy wife, got pregnant with her first child on her honeymoon. Nine months later a healthy baby girl was born. Over the next six years she suffered miscarriage after miscarriage in an attempt to expand her family. Finally, late in 1954 she learned that she was once again pregnant. The doctors told her that there was a wonderful medication available to help support the pregnancy. She was given diethylstilbestrol (DES) and my story begins.

The Early Realities of DES

My childhood and youth were not very eventful. As an adolescent, I had very painful periods, though still not outside the norm. When I was 19 years old in 1974 my mother read an article in a woman’s magazine about DES, and the daughters who were now having health concerns do to DES exposure. Recognizing that she had taken DES during her pregnancy with me, she told me that I should be evaluated by a physician. Up until then I had never had a PAP test or any pelvic exam. I was young, modest, and naive.  My innocence was gone in the sterile clinical exam room. Medical history taken, laying down on the hard table, feet in the stirrups I was poked, prodded, and then scraped for samples of cervical cells. Then the doctor asked for the colposcopy equipment to be brought in. Wheeled into the room, my insides were stained, and then magnified. Finally, when the abnormalities were found, the camera attached to the colposcopy machine documented the DES damage. I was now a DES Daughter.

These exams now became an every 6-month ritual as I was told “you will get cancer, it isn’t a matter of if, but when.”  They wanted to catch the cancer (Clear Cell Carcinoma) the moment it turned. After a few years though with no changes they had started relaxing their prognosis. I was allowed to go in for these exams once a year. Still cautious, but more optimistic, I starting living my life as a young woman. I dated, fell in love and got married.

Starting a Family as a DES Daughter

When my husband and I decided to start our family, I had been given no warnings about the potential issues with pregnancy combined with my DES exposure.  My fertility was good, I got pregnant right away. The pregnancy also went smoothly until the 22nd week of gestation. I was feeling nothing different, enjoying the growing baby I was carrying. Without warning my water broke. Quickly I called my Ob/Gyn who dismissed my experience. “Perhaps you just lost bladder control, not unusual.”  I knew it was not an issue of bladder control, so I went in to his offices. It was the lunch hour, the offices were quiet and the staffing short. I was taken back to an exam room and waited. I waited a long time, and finally, the dismissive doctor came in to examine me.  He tested my discharge and his affect changed at once. He called over to the hospital and had me admitted at once.

DES Exposure Claims its First Victim

I was observed for several days, with no changes. Finally contractions started, and at 22 weeks I delivered a nearly one pound baby boy. He died during the delivery. The DES exposure had taken its first victim.

DES Exposure Claims its Second Victim

A few months later, back in the sterile exam rooms for more testing, I was found to have a very incompetent cervix. I was told that I would be considered a high risk pregnancy from then on, though they felt there were options to help me carry a baby to term. With the blessing of the doctors I became pregnant again, and this time a cerclage was placed in my cervix to help support the pregnancy.  When the doctor came in to see me just after the cerclage was placed, his face was long.  “Your cervix is very weak. You are only 11 weeks pregnant, but already you are totally effaced and starting to dilate. You will need to be on total bed rest, and make the pregnancy last as long as you can.”

With that I was sent home and spent the next 12 weeks in bed.  At 23 weeks I started spotting and having contractions. I was taken to the hospital where they tried to stop the labor, but could not.  I delivered my second child,  a son who was 1 lb 8oz. with paper thin skin. I could fit my wedding ring over his hand and up his arm.  We were told to expect him to die within an hour of birth due to his prematurity, but he didn’t. He lived an hour, then two then four. Finally they decided to transfer him to a NICU unit in a larger city about 2 hours away by car.  I was alone on the maternity floor, mothers nursing babies, walking the halls calming fussy babies, and my child was a fragile package whisked out of my sight, and off to another hospital far away. Tyler lived for 10 days. He fought hard for life, that one and a half pound baby boy. In the end, death won, and DES had taken its second victim.

We Tried Again and Succeeded

I took a few years off from trying to start a family. I had grieving to do..and healing.  I finally went up to the Medical school where I was first diagnosed as DES exposed and put myself in their care. There was one surgery they thought could offer me hope of having a child. It was a rare experimental surgery called a “Trans abdominal cerclage”.  The procedure was so rare that they asked to film the surgery because there would be medical students who would not see a case like mine during their education. I agreed.  So, I once again became pregnant, and at 11 weeks of pregnancy, I went back to the medical school and had the trans abdominal cerclage placed. Because of my medical history I was told to go to bed again and make the pregnancy last as long as I could. This procedure was a good fix. I carried my third child to term.  Four years later I put myself in their care and had my last child, again at term. These two children are now young women. I feel blessed for the good medicine that allowed me to have these children.

I Am a DES Daughter

DES did not stop with my body, or my children’s lives.  My mother has been diagnosed with breast cancer, something that her DES exposure has put her at risk for. She has had treatment and it looks as though DES will not get to claim her as yet another victim.

My innocence was taken by DES. My first two children died due to DES. My mother has suffered due to DES.  I do not consider myself a victim of DES, however, I am a DES Daughter.

 

My Journey from DES Advocate to Author

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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