Reproductive performance of DES-exposed female progeny

image of empty-couffin
This 1981 study showed that fetal wastage is high in DES Daughters.

Abstract

Obstetrics and gynecology, Volume 58 – Issue 1, July 1981.

The reproductive performance of 106 patients exposed in utero to diethylstilbestrol by maternal ingestion is described.

Fetal wastage is high, apparently because of spontaneous abortion during the first and second trimesters.

Recommendations – see image below – are made for preconception counseling of exposed progeny to increase fetal salvage.

Obstetrics and gynecology, Volume 58 – Issue 1, July 1981.

Click to download the full study.

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Reproductive Outcome of Women exposed to Diethylstilbestrol In Utero

image of dark-candle
In this 1980 survey, among pregnancies that progressed beyond 20 weeks’ gestation, the incidence of premature delivery was significantly increased and associated with an increased perinatal mortality. Those risks are even bigger for DES Daughters with gross cervicovaginal changes. dark candle light.

Abstract

Obstetrics and gynecology, Volume 56 – Issue 1, July 1980.

Diethylstilbestrol DES exposure in utero produces histologic and gross anatomic abnormalities in the lower and upper female genital tract. The authors investigated the reproductive history of 71 DES-exposed women by comparing their questionnaire data with those of 69 demographically matched non-DES-exposed control subjects.

  • The study group’s menstrual indices were comparable with those of the control group except in menstrual flow, which was significantly shorter in duration (P < .001), and in dysmenorrhea, which was reported more often (P<.05).
  • Fertility, as indicated by incidence of pregnancy, mean gravidity, and frequency of infertility problems, did not differ between groups.
  • The incidence of early (less than 20 weeks) pregnancy complications, ectopic pregnancy, and spontaneous abortion was comparable between groups. However, the incidence of late (after 20 weeks) pregnancy complications, premature delivery (40%, P<.001), and perinatal death (25%, P<.05) was significantly increased in the study group. Among DES-exposed subjects with gross cervicovaginal changes, premature delivery was even more frequent (71.4%, P<.0005), and consequently it was associated with a higher perinatal mortality (43%, P<.001).

The authors conclude that DES exposure in utero in this study group was not associated with increased difficulty in conceiving or early pregnancy complications. However, among pregnancies that progressed beyond 20 weeks’ gestation, the incidence of premature delivery was significantly increased and associated with an increased perinatal mortality. The mechanism(s) for these premature deliveries remains to be elucidated.

Click to download the whole study.

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Reproductive problems in the DES-exposed female

image of pregnancy
Reproductive problems in the DES-exposed female, 1980 findings. Pregnant-25-weeks.

Abstract

Obstetrics and gynecology, NCBI PubMed, PMID:7366902, 1980 Apr.

The records of 25 diethylstilbestrol-exposed women under treatment for reproductive dysfunction were reviewed.

A tendency toward:

  • pregnancy wastage (5 of 10 patients),
  • ectopic pregnancy (2 of 8 patients),
  • cervical factor infertility (15 of 20 patients),
  • hysterographic abnormalities (15 of 19 patients),
  • and ovulatory dysfunction (10 of 25 patients) was noted.

With the exceptions of ovulation induction and cervical cerclage, no means of treatment can be recommended.

Click to download the full study.

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Comparison of Pregnancy Experience in DES-Daughters and unexposed Women

pregnant image
In this 1980 study, the difference in pregnancy outcomes between the DES daughters and the unexposed is highly significant. Pregnant.

Abstract

A comparison of pregnancy experience in DES-exposed and DES-unexposed daughters

The Journal of reproductive medicine, NCBI PubMed,  PMID:7359503, 1980 Feb.

Reproductive histories were compared for 226 DES-exposed and 203 -unexposed daughters whose mothers participated in a double-blind evaluation 27 years before.

  • Irregular menstruation was slightly more common among the exposed (10%) than among the unexposed (4%).
  • Nineteen of the exposed and only four of the unexposed had primary infertility.
  • Among those at risk, 86% of the unexposed and 67% of the exposed had become pregnant. The reasons for these differences are not known.
  • Comparison of evaluable first pregnancy outcome revealed full-term live birth to be more common among the unexposed (85%) than the exposed (47%).
  • Premature live birth was experienced by 22% of the exposed but only 7% of the unexposed.
  • Nonviable outcomes of stillbirth, neonatal death, miscarriage and ectopic pregnancy occurred in 31% of the exposed and 8% of the unexposed.

The difference in pregnancy outcomes between the groups is highly significant. The DES-exposed with transverse cervicovaginal ridges were more likely to experience a nonviable outcome. Overall 82% of the exposed and 93% of the unexposed had at least one live offspring.

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My DES Daughter Journey – Interview with June Stoyer

 

Recorded radio interview by The Organic View, with host, June Stoyer joined by DES Daughter DES Daughter Google+ icon Domino talking about her journey.

Part 1

Part 2

Part 3

Alternatively, click here to listen to the show, and/or download the iTunes podcast.

The Organic View Radio Show logo Host June Stoyer interviews the top CEO’s, experts, movers and shakers that affect the organic industry as well as our environment. The Organic View show explores all of the issues impacting the organic industry, proposed regulations, the environment, politics, living green and sustainability.

Read more about my DES Daughter journey : Introduction and Doctors.

DES Daughters

What is a DES Daughter? Who are they?

DES Daughters are all the women born between 1938 and 1978 who have been exposed in utero to the anti miscarriage drug and man-made estrogen Diethylstilbestrol (or DES in short) Diethylstilbestrol DES Google+ Page icon.

They live in the U.S.A., Canada, Australia, Europe and all corners of the world where the drug was prescribed decades ago during pregnancy.

DES Daughters during a DES Symposium image
DES Daughters during the MGH Boston 2011 DES Symposium – Andrea Goldstein, Caitlin McCarthy, Cheryl Roth.

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.

2011 Historic DES Breast Cancer Court Cases

Boston, Massachusetts, USA where the DES cancer link was established 40 years ago, is making history again with the first DES Breast Cancer court cases on behalf of 53 DES daughters.

The lawyers at Aaron M. Levine & Associates law firm, after 50 years of successfully representing hundreds of DES daughters for infertility, vaginal and cervical cancer, and preterm delivery, have turned their attention to the risk of DES breast cancer in DES daughters.

Aaron M.Levine & Associates are the only law firm in America taking this focus and investment. They are currently representing DES daughters for their breast cancer injuries and are accepting new cases for review and evaluation.

The United States Center for Disease Control (CDC) and the most recent national study sponsored by NIH, (Palmer J, Wise L, Hatch E, et al. “Prenatal diethylstilbestrol exposure and risk of breast cancer.” Cancer Epidemiol Biomarkers Prev 2006;15(8):1509-1514.) concluded that DES daughters over the age of 40 are at a significantly increased risk for breast cancer.
In confirming the Palmer study in court as a valid and important reopening of the never-ending DES tragedy, Dr. Adami stated:

” so the bottom line of this is, it provides strong evidence that DES exposure increases the risk, and that the risk increase starts sometime around age 40 and then grows as women get older.”

Moakley Federal Courthouse Boston Massachusetts USA image
Historic DES Breast Cancer Court Cases at Boston Federal Courthouse (07 – 23 September 2011)

Diethylstilbestrol, primarily promoted by Eli Lilly and Company and E.R. Squibb & Sons (the predecessor to Bristol-Myers Squibb) was given to millions of pregnant women in the 1950’s and 1960’s and was contraindicated for use in pregnancy  in 1971 when it was discovered to cause cancer and malformations of the reproductive tract. Massachusetts Governor Deval Patrick recently declared “DES Awareness Week” in July 2011 commemorating the experience of DES daughters and warning of breast cancer risks.

The trial taking place in federal court opened on September, 07th 2011 and continues until September, 23rd 2011 as the 53 DES daughters involved put on further biology, toxicology, oncology, and obstetrics and gynaecology experts to support Dr. Adami’s opinion of this substantial DES breast cancer risk in the daughters.

” There has been little press coverage and apparently little public attention. The chemical companies prefer it that way.  It’s just two lawyers for the plaintiffs and about 20 lawyers representing the chemical companies in the court room! 

comments DES Info, a group created by several DES daughters as a way to proactively share information about Diethylstilbestrol.

Show your support for the Historic DES Breast Cancer Court Cases

The hearings are open to the public and support from the whole DES community is much needed.
If you can please:

  • Spread the word on your social media networks
  • Post your comments and messages of support on DES Info who is closely following and strongly supporting the historic DES breast cancer court cases
  • Respond to the DES Info call to attend the hearings especially on Monday 19th and Tuesday 20th September – The result of this hearing will be to determine if the first ever DES class action suit in the US will be allowed to go forward. There has never been one before, because a class action suit requires a commonality of injuries in the US.

The outcome of the historic DES breast cancer court cases in the USA will have repercussions not only in the USA but around the world as DES victims everywhere are struggling to get compensation for the devastating side effects of DES exposure.

My thoughts are with the lawyers, scientists and more importantly the DES daughters involved in the hearings. Somehow, they represent all of us.

The Boston Federal Courthouse is at:
United States District Court for the District of Massachusetts — Boston
1 Courthouse Way
Boston, Massachusetts 02210 – USA
(617) 748-9152

The hearings will likely begin at 9:30 a.m. and go until 4:30 p.m. each day, with lunch in between.

If you want any more information or feel you could help in any way, please contact Aaron M. Levine & Associates.

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Facebook issue – solved!

To all our Facebook friends – We have a good news!

After a few email communications, a few online forms to complete and a little help from a Facebook member of staff, we are pleased to announce that we are back on Facebook!

After 14 days of being inactive, Diethylstilbestrol, Journal of a DES Daughter Facebook page is live again so is the account used to administer the page.

So what happened?

Diethylstilbestrol Journal of a DES Daughter Gravatar imageFacebook, the successful social media platform where, in just a few months, we connected with more than 200 fans, 330 friends and DES activists from around the world, disabled our account on Wednesday 07th September without any warning nor explanations. As a result our page became inactive and inaccessible.

We were devastated by this action which made disappear in just a click 6 months of hard work to help raise awareness of the DES drug tragedy. Not everybody likes Facebook, but this platform is a great tool for us not only to keep up to date with the most recent DES Action Groups news and updates but to connect with other DES victims and spread the word about the DES side effects which affect millions of people around the world.

As if it wasn’t bad enough it could not have happened at a worst time when DES victims like myself were eager to read, share and comment on the fate of 53 DES Daughters currently battling in court in Boston, USA to condemn pharmaceutical companies for their responsibilities in their breast cancer associated with DES exposure.

On Wednesday 21st September 2011, Facebook emailed us back to say: “After investigating this further, it looks like we suspended your account by mistake. We are sorry for the inconvenience.” We are thrilled that the problem has now been solved and access to our facebook page has been restored.

Thank you for your kind comments and messages of support whilst we were busy trying to fix this issue. Please encourage your friends to like us on Facebook!