New Online Global DES Health History Survey

Calling all DES Mothers, Daughters and Sons!

DES diethylstilbestrol health history 2012 survey image
The DES Health History Global Survey is our chance to be heard and make all of our health experience counts!

Take part in the new DES Health History survey created by DES Action USA and open to all DES-exposed individuals worldwide.

The survey is designed to establish trends and identify health issues faced by women who took Diethylstilbestrol, their DES exposed children, and also their children (DES granddaughters and grandsons).

Data from the DES community on health conditions – beyond those already known – which appear more frequently in DES-exposed individuals than among unexposed populations is critically missing. This information is needed to share with researchers who can follow-up with further study.

My mum has recently been diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease that affects the thyroid. Could it be associated with her exposure to Diethylstilbestrol back in the late 60’s? Is she the only woman who was prescribed the wonder drug DES during pregnancy to suffer from this health condition?

I suffer from anxiety and stress from worrying about what the future holds for my daughters and whether Diethylstilbestrol will affect their health and chances to give me and my husband grand children. Am I the only DES daughter out there who cries in secret when her little girl plays being a mum knowing that this synthetic hormone may one day prevent that imaginative play from becoming reality due to potential DES pregnancy complications?

The children of Marie-Odile Gobillard-Soyer, a French DES mother and researcher in molecular biology, both committed suicide. She started an association and in 2011 conducted a national study among children of French DES mothers which revealed a link between DES and mental illness issues in DES daughters and sons.  Could this be a worldwide trend?

In October 2011, the alarming results of a study analyzing the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed were published in the prestigious New England Journal of Medicine. But victims of this drug scandal wonder if other health conditions that are currently not associated with DES by the medical profession could in fact be the direct result of Diethylstilbestrol exposure. Hopefully the new global DES Health History Survey will answer these questions.

Since I started my Journal of a DES Daughter, I’ve read many sad testimonials and DES stories. What they all share in common is the incertitude for the future and the feeling that the DES drug scandal and its associated health issues are not enough acknowledged publicly and by the medical profession. The DES Health History Survey will provide DES Actions groups and DES activists with the data needed to push for more studies and support for DES victims.

Why is it important to know whether your health condition is associated with DES or not? First because DES victims have the right to KNOW and more importantly because PREVENTION of these conditions when you know you are at higher risk can save lives.

The deadline for the completion and return of this survey is JUNE 15th 2012.

The survey can be completed online or you can download the “DES Health History Questionnaire“.

Please share this information on your social networks, with your friend and family who may be interested in completing the survey. I can’t stress enough the importance to take part! This is our chance to be heard and make all of our health experience counts!

Five Scary and Shocking Facts about Diethylstilbestrol

1. As early as 1939, researchers had shown that DES Diethylstilbestrol could cause cancer and changes in the reproductive tracts of mice and rats, but drug companies ignored these results ; they also tested DES on pregnant women without consent.

Image from A Healthy Baby Girl, a 1996 documentary in which filmmaker Judith Helfand chronicles the health consequences of her in utero exposure to diethylstilbestrol
DES did not lead to healthier babies, nor did it prevent miscarriages, according to research that began appearing in 1953

2. In 1953, a study of 2000 women at the University of Chicago showed that DES did not prevent miscarriage; on the contrary, it was associated with increases in premature labor and a higher rate of abortions.

3. Despite this study, the drug continued to be used.  It wasn’t until 1971 that American drug companies were legally obliged to label DES “unsuitable for pregnant women”.  The FDA did not ban the drug but issued a contraindication which means that the drug DES continued to be prescribed to pregnant women even after the link between a rare form of vaginal cancer in young women and prenatal exposure to DES was established.

4. A whole generation of new medical students and doctors don’t know about Diethylstilbestrol, yet a study published in 2011 confirmed lifetime risk of adverse health effect in DES daughters (the youngest are in their mid 30’s early 40’s).  DES is one of those cases where the patients often know more about its effects than the doctors.

5. DES is a multi-generational tragedy.  Research by the Netherlands Cancer Institute in 2002 suggests that hypospadias a misplaced opening of the penis occurred 20 times more frequently among third-generation sons.  In laboratory studies of elderly third-generation DES-exposed mice born to DES daughter mice, an increased risk of uterine cancers, benign ovarian tumors and lymphomas were found.  Third-generation male mice were shown to be at risk for certain reproductive tract tumors.

Are we going to ignore these results like we did in 1939?

Third-generation children, the offspring of DES daughters and DES sons, are just beginning to reach the age when relevant health problems can be studied.  Funding for more research is critically needed to continue to look for evidence of reproductive abnormalities and cancers among third-generation DES women and men to ensure they receive appropriate follow-up care.

New Study Suggests Lifetime Risk of Adverse Health Outcomes for DES Daughters

A study published on October 06th, 2011 in the prestigious New England Journal of Medicine tallies the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed.

Breat Cancer Awareness pink ribbon image
New study suggests that women exposed to DES are 82% more likely to develop breast cancer after age 40

Among these health risks, the study suggests that women exposed to diethylstilbestrol, commonly called DES daughters, are 82% more likely to develop breast cancer after age 40.

Overwhelmed by the extensive media coverage that the publication of this study sparked in the USA, Canada, Australia and France but upset by the total absence of information in the UK, I contacted a health journalist at the UK Press Association to request for this information to be made available to the general public and widely shared and circulated in the UK press.

Given that October is Breast Cancer Awareness Month and 2011 marks the 40th Anniversary of the DES cancer link, I am hoping that my emails to the Press Association won’t go unnoticed and will grab the attention of UK journalists.

Findings of the DES Study

As part of this new study, researchers at the National Cancer Institute analyzed data from three separate studies that have followed more than 4,000 DES-exposed women since the 1970s. Compared with a control group of unexposed women, DES daughters were found to have higher rates of infertility (33% versus 16%), miscarriage (50% versus 39%), preterm delivery (53% versus 18%), and ectopic pregnancy (15% versus 3%). The DES-exposed women were also 82% more likely to develop breast cancer after age 40, and more than twice as likely to experience menopause before age 45. For most of the health conditions included in the study, the increase in risk was even greater for DES daughters who had been exposed to especially high doses of the drug.

Our study carefully documents elevated risk for DES-exposed daughters for a host of medical problems — many of them also quite common in the general population,” said study author Robert N. Hoover, M.D., director of the Epidemiology and Biostatistics Program in NCI’s Division of Cancer Epidemiology and Genetics. “Without the sentinel finding of a very rare cancer in young women, and without the sustained follow-up of those who were exposed, we would not know the full extent of harm caused by DES exposure in the womb.”

Many of the potential health complications identified in the new study have been raised in previous research, in some cases with conflicting results. A 2010 study of DES daughters conducted in the Netherlands, for instance, found no link between exposure and breast-cancer risk. However a 2006 study had already suggested a higher risk of breast cancer in DES daughters. This year (2011), fifty-three DES daughters who developed breast cancer have brought a lawsuit against several DES manufacturers; the lawsuit is currently under way in Boston, USA.

What the study doesn’t mention is the health risks for DES sons. Despite the fact that women who have been prescribed diethylstilbestrol during pregnancy gave birth to as many sons as daughters, DES sons have once again been left out from a research study. Why researchers fail to include all those who have been affected, men and women? To me, we will never truly understand the extent of the DES tragedy if we don’t take a comprehensive and global approach to the problem. So even though, I welcome this study the need for more research remains obvious.

Situation in the UK

According to the support group DES Action UK who unfortunately is no longer active, more than 300,000 people in the UK (5 to 10 millions worldwide) have been exposed to diethylstilboestrol. So why countries like the UK fail to inform the general public about such an important study?

DES was prescribed to pregnant women in the UK between around 1950 and 1975, mainly to prevent miscarriage. This was despite the fact that research published in the American Journal of Obstetrics and Gynecology in 1953 revealed that women receiving DES suffered a higher rate of miscarriage. The synthetic estrogen was developed in England in 1938. It wasn’t patented and went on to be produced by more than 200 companies. In the UK, DES was known as Stilboestrol® and was sold under many brand names.

Yet, the DES tragedy remains largely unknown in the UK. Some British doctors have never heard of DES and there is only one dedicated clinic in Europe, based in Ireland. Many women are unaware that their infertility or cancer is a result of their mother having taken the drug. All of these women are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.

As a DES daughter myself I have reason to be interested in this new report in the New England Journal of Medicine that takes a thorough look at the heightened medical risks associated with prenatal DES exposure. And I am sure I am not the only one in the UK who feels the same. Despite overwhelming evidence of numerous health risks associated with DES exposure nobody seems to care in the UK. Media interest in the DES issues would definitely help to reach out to all those affected but unaware that their health problems may be related to Stilboestrol®.

The lack of UK media coverage on this new important study just shows how thick the wall of silence around the DES issues in the UK is. To share my experience and knowledge of this drug, I started this personal blog earlier this year for DES mothers, daughters and sons, and others interested in the DES issue. But this is a drop in the ocean. I need support from the media to reach out to people who may have been exposed. I sincerely hope the UK will show an interest in this study and will take on this opportunity to break the wall of silence.

DES Sons Studies

The scope of adverse effects in males exposed to diethylstilbestrol (also called DES sons) has been a lot less documented than the effects in females (read post “DES Sons Numbers and Health Concerns“). However, a number of studies have confirmed and identified that DES sons are susceptible to a wide range of medical adverse effects associated with prenatal exposure to diethylstilbestrol.

Studies on DES Sons Health Issues

The most common abnormality in DES sons is epididymal cysts. The likelihood of DES sons having epididymal cysts ranges from 21% to 30%, in comparison with 5% to 8% of unexposed men (Gill, 1988; Gill et al., 1979).The epididymis is a structure on the back of each testicle where sperm are stored. Epididymal cysts are non-cancerous growths that feel like small lumps. They may disappear and recur over time. They do not need to be treated unless they are painful. However, all lumps should be reported to a doctor and testicular self-exams should be performed on a monthly basis.

DES Sons studies on Diethylstilbestrol health issues and infertility for men image
Most DES Sons are unaware of their exposure to Diethylstilbestrol

Testicular problems in some men exposed to Di-Ethyl Stilbestrol® include both small testicles and undescended testicles. Both of these abnormalities are visible at birth. Men with undescended testicles have an increased chance of developing testicular cancer, even if their mothers didn’t take Di-Ethyl Stilbestrol®. The only definitive prospective study to date of the association between in utero exposure to diethylstilbestrol and testicular cancer indicated that levels of testicular cancer were elevated, though not to a statistically significant extent, among DES-exposed men (Strohsnitter et al., 2001). The study found it unlikely that DES exposure is heavily associated with testicular cancer, but concluded that the findings did “lend support to the hypothesis that the prenatal hormonal environment may influence the development of testicular cancer in adults” and suggest follow-up study of DES men for increased risk of testicular cancer.

Some studies have also indicated that testicular varicoceles occur more often in DES sons than in other men. A varicocele is an irregularly swollen or varicose vein on the testicle. This enlarged vein produces a higher temperature than is normal for testicles, and over a period of years can lower the number of normal sperm as a result.

Studies of the psychological effects of DES exposure are limited, but evidence has been found that diethylstilbestrol is linked with increased likelihood of various psychological and neurological impairments. This includes anxiety, major depressive disorder, and other mood disorders (in DES sons and daughters).

Studies of cancer, heart disease, and autoimmune diseases among DES sons are ongoing.

Studies on DES Sons and Infertility

There has been some concerns amongst DES sons that their DES exposure might be linked to infertility. Although one study found a lower sperm count in men exposed to diethylstilbestrol compared with unexposed men (Gill, 1979), a 40-year follow-up study of DES sons found no increased risk of infertility among men exposed to DES before birth (Wilcox, 1995). The men in this study were all born between 1950 and 1953.

Read Diethylstilbestrol DES and fertility studies.

The health issues shared by DES sons include but are not limited to the above identified health problems. Prenatal exposure to Di-Ethyl Stilbestrol® is responsible for a wide range of not only medical but personal and social adverse effects. Further study and monitoring of these effects on men is critically needed.

If you suspect or know that you are a DES son, tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page. The scope of adverse effects in DES sons is less documented than the effects in DES daughters but you are not alone and support is available through the DES Sons International Network. Consider joining the DES community on facebook and twitter.

DES Sons (Part 2) to be continued – read our next post on DES Exposure and Gender Identity.

Sources: DES Sons International Network, National Cancer Institute, CDC, DES Action USA, TransAdvocate.org

New AFSSAPS DES survey and update

AFSSAPS DES survey and update offices image
AFSSAPS offices - 2011 DES survey and update

Between 2010.09.10 and 2010.10.10, the National French Agency for the Safety of Health Products (AFSSAPS) conducted a DES survey aimed at assessing the knowledge of gynecologists and obstetricians regarding the complications associated with Dietylstilbestrol exposure as well as evaluate their expectations in terms of information campaign about this issue.
This survey was conducted in collaboration with the French National Federation of Medical Gynecology Colleges, the National College of French Gynecologists and Obstetricians, and the French Company and Gynecology Group for the Study of In vitro fertilization in France.

A total of 204 completed questionnaires were returned. Gynecologists who responded were generally aware of the consequences of DES exposure with 71% of them having at least one patient exposed to Diethylstilbestrol in utero.

AFSSAPS DES survey results

Analysis of the responses regarding the level of knowledge about DES exposure suggested that:

  • A majority of practitioners have an imperfect / limited knowledge of its consequences
  • Investigating DES exposure in situations which suggests potential exposure is not systematic
  • Genital anatomic abnormalities in boys exposed in utero are not well known by gynecologists
  • Knowledge of the risks faced by the third generation is very limited, yet it is important to continue monitoring these children to assess the multi-generational effects
  • The “memory” of the consequences of DES exposure is lost with the new generation of doctors
  • Recent data on the third generation is largely unknown
  • Almost half of the practitioners who responded requested a new DES information campaign

AFSSAPS DES update June 2011

As a result of the 2010 survey, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication released in June 2011 emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It also highlights the crucial role of DES patients in handing down the “record” of their exposure to the next generations.

The AFSSAPS 2011 DES update covers the following topics:

  • DES historical facts
  • Current issues
  • Risks associated with DES exposure
  • Breast cancer risks
  • Post adolescent psychiatric disorders – Later this year AFSSAPS plans to conduct a public hearing for experts to reexamine their facts on this matter.
  • Risks for the 3rd generation
  • How to screen DES exposure
  • Routine medical follow-up
  • Recommendations for fertility problems
  • DES pregnancy care

As a DES daughter and mother of 3 girls who may also be affected (only time will tell …), I really welcome these efforts from AFSSAPS and I believe this is a very important document which will serve as a reference for years to come. The results of the survey and the update are available to download from the AFSSAPS website in French. AFSSAPS is circulating this information through professional organisms to reach out to health professionals.

I sincerely hope AFSSAPS and the French government will follow through with additional efforts to spread the word, and reach out not only to all doctors, but also to the general public. With the recent Mediator scandal maybe AFSSAPS doesn’t want to make too much noise about the DES tragedy but at the end of the day it is our health and our children health which are at stake and we have the right to know.

AFSSAPS Downloads

English AFSSAPS DES report 2011 image
Download the 2011 AFSSAPS DES report
AFSSAPS DES report 2011 image
Téléchargez le rapport AFSSAPS 2011

The AFSSAPS DES Update 2011 was promised by one of their doctors who attended the DES conference in Paris in November 2010. It is very widely based on the Réseau DES France publication which followed the conference. It is an official text for gynecologists, obstetricians and doctors. The English translation has been coordinated by Réseau DES France and reviewed by Carol Devine (DES Australia NSW), Pr Tournaire and myself.

Thanks go to Pam Solere for her trust and encouragements.