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Most Recent DES Blog Posts
- New Online Global DES Health History Survey
- Five Scary and Shocking Facts about Diethylstilbestrol
- New Study Suggests Lifetime Risk of Adverse Health Outcomes for DES Daughters
- Historic DES Breast Cancer Court Cases
- Facebook issue – solved!
- Gender Identity and DES Exposure
- DES Sons Studies
- DES Sons Numbers and Health Concerns
- New AFSSAPS DES survey and update
- Distilbène®: 20 Years of Legal Battle
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Category Archives: DES Daughters
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.
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.
Posted in DES Daughters, DES Drug, DES Research, DES Sons
Tagged cancer, FDA, health, opinion, survey
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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.
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.
Posted in DES and Media, DES Call to Action, DES Daughters, DES Research
Tagged 2011, breast cancer, cancer, frustration, health, media, New England Journal of Medecine, opinion, Robert N Hoover, survey
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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.”
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 two to five million pregnant women in the 1950′s and 1960′s and was banned 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.
Posted in DES Action Groups, DES Call to Action, DES Daughters, DES Events
Tagged 2011, breast cancer, cancer, current events, events, health, USA
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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?
Facebook, 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!
Gender Identity and DES Exposure
Several published studies in the medical literature on psycho-neuro-endocrinology have examined the hypothesis that prenatal exposure to estrogens (including Diethylstilbestrol) may cause significant developmental impact on sexual differentiation of the brain, and on subsequent behavioural and gender identity development in exposed males and females. There is significant evidence linking prenatal hormonal influences on gender identity and transsexual development.
There is a possible connection between DES exposure and gender variance
In 1999, Dr. Scott Kerlin (founder of the DES Sons International Network) began researching the effects of Di-Ethyl Stilbestrol® on the health of genetic males who had been exposed prenatally. A substantial amount of research had been done on women who had been exposed but relatively little had been done on men and DES sons. When it became apparent that a significant portion of his research group were either transsexual, transgendered or intersexed, he began to explore the possibility of a connection between prenatal DES exposure and gender variance. Dr. Kerlin is not the first researcher to note a correlation between DES exposure and feminized behaviour in genetic males; studies go back as far as 1973. However, Dr. Kerlin has delved much deeper than those who came before.
Radio Interview: DES Exposure and Gender Variance
Listen to KWMR Radio Interview with Dr. Dana Beyer on the side effects of Diethylstilbestrol and its influence on gender identity
Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.
Dr. Dana Beyer is the medical advisor and web manager of the DES Sons International Network, on the effects of endocrine disrupting compounds such as Diethylstilbestrol, DDT, phthalates and bisphenol A, on human sexuality and reproduction, as well as providing personal support and mentoring. In 2005 she presented a breakthrough paper, with her colleagues Dr. Scott Kerlin and Dr. Milton Diamond, to the International Behavioural Development Symposium, delineating the impact Di-Ethyl Stilbestrol® has had in causing intersex and gender variations in human beings.
I understand this is a sensitive and controversial matter but I feel it is important to bring this issue to light and break the wall of silence around what is still nowadays considered as “taboo”. I would like to invite all DES exposed individuals who have a knowledge of DES exposure and gender identity either through research or personal experience to share their comments and stories.
Take the survey: DES Sons – the Truth and the Unknown
Sources: DES Sons International Network, TransAdvocate.org
Posted in DES Daughters, DES Research, DES Sons
Tagged audio, Dana Beyer, DES Sons Network, interviews, media, Milton Diamond, opinion, Scott Kerlin
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Victory for a DES 3rd generation victim : the pharmaceutical company condemned
June 09th 2011 marks a turning point in France for DES victims with a court verdict in favor of a DES Grandson who was born prematurely. This great news has been welcomed by the DES community and Action Groups from all corners of the globe. Fran Howell, DES Action USA Director, commented: “Louis’ win is a huge victory and around the world people are celebrating with him and his family“. We are all so happy for Louis and his mother Hélène.
Below is a translation of a Réseau D.E.S. France press communication - June, 10th 2011
Court case on DES 3rd generation - Versailles court of appeal
After a first judgement against UCB Pharma, the Appeal Court of Justice confirmed the first verdict on June 09th 2011 : 1,7 million euros damages are to be paid to Louis’ family.
Hélène was born in 1958. Her mother was prescribed Distilbène® during her pregnancy, making her one of the 80,000 French “DES daughters“. In 1990, during the 6th month of her pregnancy, Hélène gave birth to Louis, severely premature and suffering from important sequels : his handicap is assessed as 80% ; he can neither read nor write, moves in a wheel-chair and needs constant help. He is yet another victim of the drug Distilbène®… taken by his grandmother in the 50′s !
We share Hélène’s satisfaction and relief that the prejudice has at last been recognized by the Appeal Court to enable her family to live onwards. She can now sleep at night knowing that her son’s future is assured.
This decision is all the more important that it is the first time the the Appeal Court has judged a DES Distilbène® case concerning the 3rd generation.
This victory is consecutive to a well-prepared medical file which proves :
- a prescription of Distilbène® to Hélène’s mother
- that Hélène’s pregnancy was closely controlled because of her in utero DES exposure
- Louis’ medical follow-up was in conformity to the 1990 protocols
- that Louis’ condition has no other cause than his premature birth.
Finally, we are satisfied that the Versailles Court of Appeal confirmed the responsibility of UCB Pharma for their lack of diligence in commercializing Distilbène® on the market.
We again hope that this decision will bring a term to the difficult struggle for justice, started by Hélène in 2002.
In France, Distilbène® and Stilboestrol® (the commercial names for the diethylstilboestrol synthetic hormone – DES in abbreviation) was prescribed to 200 000 pregnant women to avoid miscarriages. 160 000 children were born from these pregnancies. For the “DES daughters”, the side effects are : sterility, miscarriages, premature births, cancers…
Sources: Article courtesy of Réseau D.E.S. France
Posted in DES Action Groups, DES and Media, DES Daughters, DES Legacy
Tagged 2011, announcements, current events, events, France, UCB Pharma
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DES Cancer Link 40th Anniversary
The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later
Below is a guest post from DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy.
The DES Tragedy Is Far From Over
By Caitlin McCarthy
In the April 18, 2011 issue of The Boston Globe, WONDER DRUG screenwriter Caitlin McCarthy appeared on the cover and in the feature story about DES
April 22, 2011 marks the 40th anniversary of the DES cancer link being made at Boston’s Massachusetts General Hospital. DES (diethylstilbestrol), a toxic and carcinogenic synthetic estrogen, is considered the world’s first drug disaster. It was prescribed to millions of pregnant women for decades: from 1938 until 1971 (and in a small number of cases for several years thereafter) in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World. The currently proven effects of exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons; abnormal reproductive organs; infertility; high-risk pregnancies; and an increased risk for breast cancer in DES Daughters after age 40. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research.
I’m a DES Daughter who was born at the tail end of the tragedy in the U.S. My mother was unknowingly prescribed a prenatal vitamin which contained DES. I didn’t discover my DES exposure until 2005, when a doctor made the connection during a colposcopy. How scary is that?
What’s even scarier is that I’m not alone. Around the world, there are thousands – maybe even millions – of people walking around today, totally unaware that they, too, were exposed to DES. All of these people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.
In an effort to raise awareness about DES, I wrote a feature film screenplay entitled WONDER DRUG. Set in Boston, Massachusetts, WONDER DRUG interweaves the lives of a Big Pharma executive, feminist doctor, and thirtysomething newlywed across different decades. The script has won awards or received nominations in over 20 international film festival screenplay competitions and labs, including selection as an Alfred P. Sloan Foundation script for the prestigious Hamptons Screenwriters Lab, and a live staged reading of select scenes at the 15th Annual Hamptons International Film Festival, sponsored by the Sloan Foundation and starring Steve Guttenberg (THREE MEN AND A BABY) and Alysia Reiner (SIDEWAYS). Acclaimed independent director Tom Gilroy (SPRING FORWARD) has expressed an interest in directing WONDER DRUG. All we need now is financing. (Producers can contact me via my official website: www.caitlinmccarthy.com.)
I also worked jointly with the offices of US Senators John Kerry (D-MA) and Scott Brown (R-MA) on obtaining an apology from the FDA for the DES drug disaster. That effort was first publicized on acclaimed author Elizabeth Searle’s website, and later picked up by renowned media outlets such as The Huffington Post.. (Thank you, Diana Bianchini, for writing the HuffPo piece!).
The FDA declined to apologize, but did send a three-page letter to Senators Kerry and Brown acknowledging DES as a “tragedy” on February 22, 2011. Upon reading the FDA acknowledgement, I immediately emailed Jeanne Ireland (who signed the FDA’s letter), asking the FDA to remove DES from its webpage touting DES as one of its milestones in “100 Years of Promoting and Protecting Women’s Health.” Jeanne Ireland didn’t respond to me. Instead, she palmed me off on Marsha B. Henderson, Associate Commissioner for Women’s Health (Acting) for the FDA. (Check out the communication between Caitlin and Ms. Henderson by reading the post: The FDA is lying by omission).
To this day, the offensive item about DES remains on the FDA’s website. And to this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in verdicts and out-of-court settlements to DES Daughters and Sons who suffered injuries from their exposure.
I am grateful that the 40th anniversary of the DES cancer link has triggered a flurry of press coverage. The Boston Globe recently ran a feature story about concerns for third generation effects; WCVB-TV Boston’s “Chronicle” newsmagazine aired a DES segment; Reuters published an item about DES Grandsons; New England Journal of Medicine ran an article about living with DES exposure; and Psychology Today features a story about remembering DES’s “tragic chapter in American childbirth.” Even the old “Lou Grant” TV episode about DES is making the rounds on Hulu.
On April 25, 1985, Ronald Reagan was the only US President to proclaim a National DES Awareness Week. No other president has ever done that. Why? DES is far from a dead issue.
I will continue my fight to raise awareness about the DES drug disaster. DES victims are the canaries in the coalmine when it comes to synthetic estrogen. The reproductive abnormalities, cancers, and infertility we deal with daily show what could happen to the human race if we don’t employ the precautionary principle. It suggests we act to protect public health when there is credible evidence of harm, rather than wait for absolute proof. What we do now clearly has an impact on future generations. Please join this fight with me.
ABOUT CAITLIN MCCARTHY:
Caitlin McCarthy received her Master of Fine Arts in Creative Writing from Emerson College, which is ranked by U.S. News & World Report as one of the best graduate programs in the country. An award-winning screenwriter at international film festivals and labs, Caitlin has a screenplay project in development: RESISTANCE with Populus Pictures and director Si Wall (SPEED DATE; THE DINNER PARTY). In addition to screenwriting, Caitlin serves as an English teacher at an inner-city public high school. Prior to education, Caitlin worked in public relations, where she fostered relationships with the press and crafted messages for companies that were delivered worldwide.
Wanted: DES Aware Doctors
Diethylstilbestrol (DES) has affected and continues to affect in many different ways the health and lives of those who have been exposed to this drug more than 30, 40, 50 years ago. Cancer, infertility problems, ectopic pregnancies, premature labour, depression, genital abnormalities are just a few of the many delayed side effects of DES exposure; but what most DES victims share in common is that at some point in their lives they all had to face doctors who completely dismissed their DES concerns, doctors who disregarded their medical conditions as being a consequence of diethylstilbestrol.
Despite overwhelming medical evidence, DES continues to be dismissed by doctors
Three wise monkeys dressed up as doctors © Alberto Sebastiani
Over 10 million people have been exposed to diethylstilbestrol worldwide between 1938 and the late 70’s, early 80’s in some countries. After more than 40 years of research, there are confirmed health risks and side effects associated with DES exposure.
An entire generation of women have had great problems with infertility and pregnancy. Women and girls as young as nine years old have died from a rare form of vaginal cancer called adenocarcinoma, others have suffered from irreparable genital malformations. Many DES sons have experienced health problems including undescended testicles, epididymal cysts, and testicular cancer. Yet, many doctors dismiss a history of DES exposure as the cause of their patients’ conditions – even for those who were born in the timeframe the drug was prescribed to their mums before a health warning was issued by the U.S. Food and Drug Administration (FDA) in 1971 and even for those who have evidence that they have been exposed before birth to this carcinogen and teratogen.
When Michael Freilick founder of the National DES Sons Network said to his doctor he was a DES son, his doctor replied: “Forget it. It has nothing to do with your testicular cancer.”
When DES daughter Kathy saw her doctor to share her concerns about DES she was told that because she had been conceived a few years after doctors were supposed to stop prescribing DES, she couldn’t have been exposed. Yet her genital abnormality is only seen in DES daughters.
“I hear the struggles, the anger, the depression, the cries of “why me?” echoing from every part of the blogosphere. And these insensitive docs just blithely dismiss it as not a big problem! (…). And then, there are the stories of multiple miscarriages, stillbirths, and so on. Stuff I don’t even want to imagine, but I know is a daily reality to a lot of DES exposed women” writes Kathy in her blog “Women to women childbirth education”.
I recently gave a DES leaflet to my physician hoping it would make her more aware of DES and breast cancer risks for women of my age. She smiled when she read that DES was causing infertility problems. She commented: “Well surely you’ve not been affected by infertility problems with 3 daughters…”.
Ignorance kills
The lack of recognition of the risks and health issues associated with DES is very distressing for those who have to put up with the consequences of this drug disaster in their everyday lives. This is not only a burden for DES daughters and sons throughout their lives but it poses a health risk in itself due to the consequences of wrong diagnosis, or lack of preventive care which can sometimes lead to disastrous consequences.
Saskia or the mourning of a Distilbène baby
Anne-Françoise Lof in her beautifully written book “Saskia or the mourning of a Distilbène baby” tells the sad story of her baby daughter born too early to survive at 22 weeks pregnancy. Anne-Françoise knew her mum had been prescribed Distilbène® during pregnancy, she warned her doctor. Yet, the high risk of premature labor was dismissed. The story of not only Saskia but many other premature babies shows the tragic consequences of some doctors’ misinformation and dismissive attitude towards diethylstilbestrol.
Before the FDA issued a warning that DES was not safe for mums and their unborn babies, many doctors happily prescribed a drug that had not been properly tested and some even continued to prescribe it long after the warning was issued. Others questionned its efficiency and raised their concerns about the possible side effects. Years later, now that many health problems have ruined and continue to ruin the lives of DES exposed individuals very few aware doctors acknowledge the link between diethylstilbestrol exposure and their patients’ conditions.
Many young doctors don’t even know about DES and its consequences. To them it’s something of the past that their predecessors have prescribed in the belief that it would prevent miscarriage, especially if the women had a previous history of miscarriage, bleeding during pregnancy or diabetes. Most DES daughters and sons know more about diethylstilbestrol than their doctors and end up in an awkward situation where they have to educate their doctors in order to get appropriate treatment and preventive care.
DES Aware Doctors List
Most DES Action Groups have compiled a list of doctors aware of the DES history and its devastating consequences. Back in 2001, when I asked DES Action UK if they could provide me with their doctors list they provided me with a list of only four aware doctors, all London based, yet it is estimated that more than 300,000 people have been exposed to diethylstilboestrol in the UK. In the U.S. the doctors list is a compilation of the names of aware doctors given to DES Action USA by its members who were satisfied with their care. These recommended doctors are not considered DES experts, but rather aware doctors who do not dismiss DES concerns. I have no doubt that if DES Action Groups were naming and shaming the doctors who dismiss the DES concerns of their patients the list would be a lot longer.
My DES pregnancy had an happy ending thanks to a fantastic, sensitive and well informed doctor / professor. Without him I wouldn’t be celebrating mother’s day today. So there are aware doctors out there who know how to help DES victims. If you know a sensitive doctor that you would recommend please contact your local DES Action Group and share his / her contact details. It may help others.
If only doctors could understand, be more informed, aware and sensitive to what diethylstilbestrol has done to people’s lives. Di-ethyl stilbestrol is not something of the past. It hasn’t gone away. Years after exposure, the consequences and health risks for DES daughters, sons and their children are still there. The delayed consequences of the drug are felt and will most likely continue to be felt for many years to come as reveal new research carried out to determine the impact on the third generation. DES daughters and sons want answers and recognition. We need, we demand sensitive, aware doctors who acknowledge the danger and continued risks of DES exposure. Is it too much asking? The FDA waited 40 years to acknowledge the DES tragedy. How much longer doctors will need to stop dismissing their patients’ DES concerns?
Sources: Women to women childbirth education, DES Gone but not Forgotten.
DES and Breast Cancer Risks
Have you ever thought like me that the DES nightmare was behind you? This week the sad and painful reality of DES exposure hit me again after reading a message from Sharon, a 39 years old DES daughter who has recently been diagnosed with breast cancer.
DES daughters 40 years old or older have nearly twice the risk of getting breast cancer
“I have never tried to tie together everything that I have been through with my exposure to diethylstilbestrol. I truly thought that since I was able to have a baby, that was all there was to the story” says Sharon.
Her Breast Cancer Journal really moved me and made me want to find out more about DES exposure and breast cancer risks. The information found on the Net did not reassure me and made me even more concerned and upset.
A 2006 study published in the August issue of the journal Cancer Epidemiology, Biomarkers & Prevention shows that DES daughters are at higher risk of breast cancer as they age than are women who weren’t exposed to diethylstibestrol. A DES daughter is already known to be at higher risk of clear cell carcinoma of the vagina and cervix and her mother has already been shown to be at higher risk of breast cancer. This study just highlights once more that the DES side effects can continue to affect the lives of those who have been exposed to the drug, long after exposure.
The finding of this study supports the hypothesis that one risk factor for breast cancer is prenatal exposure to higher than normal levels of estrogen which is the case for the children of the mothers who have been prescribed diethylstilbestrol during pregnancy. That theory has been around, but it has been difficult to study. Unfortunately for DES daughters, the DES tragedy offers scientists a direct way to test / confirm this hypothesis.
According to the study, DES daughters 40 or older have nearly twice the risk of breast cancer than women who have not been exposed. The rate ratio is even higher for women 50 and older, but the numbers of women in that group age were too few at the time of the study to make a precise estimate of risk.
In addition, having no children or having a first child at age 30 or older, which is often the case for DES daughters due to the infertility / pregnancy problems caused by diethylstilboestrol, also increases a woman’s risk of breast cancer.
The Centres for Disease Control and Prevention (CDC)’s DES Update encourages DES daughters to follow a regular schedule for breast cancer screening, be breast aware and practise self-examinations as a way to detect any lumps in the breasts. Scheduling mammogram examinations every 1-2 years for women 40 years or older is also highly recommended.
These screenings and examinations are not cheap procedures. I recently had to convince my GP to let me have PAP/Smear tests annually when the UK National Health Service (NHS) only recommends them every 3 years but I was told that I would have to pay for them. Luckily, I have a private health insurance who after a long and animated phone conversation agreed to cover for the cost of annual smear tests under a special personal health fund that I wasn’t aware existed in my policy. As per an annual mammogram examination, a bit more convincing is still needed before my physician confirms it is justified under my circumstances. The cost involved won’t be be covered unless I have symptoms which would justify a mammogram.
“We can’t be too safe. Interesting that your physician also says it’s no big deal. My fear is that many of them don’t understand it, and much of our medical care depends on the fact that they do” comments Sharon.
If I were a heavy smoker, the risk of cancer would be taken a lot more seriously and I would most probably not have to do all this convincing to have regular thorough health check-ups. My GP would not listen to me with that look on her face leaving me feel paranoid and hypochondriac. It raises the same question over and over again: what will it take for health care providers and the NHS (or the equivalent in other countries) to take DES daughters seriously and provide us with the preventive care and support we need? Don’t they know that people are suffering from cancer caused by DES exposure as I write this blog post? DES is not something of the past. Sharon’s breast cancer was diagnosed in January 2011. She was exposed to DES in 1971, like me.
So for those of us who may think the DES nightmare is behind us, think twice. A DES daughter must stay vigilant about breast cancer screening, including regular mammograms (if you can afford it), and be careful about using supplemental hormones. As Sharon too rightly says in her Breast Cancer Journal, the DES threat is always there, it is not a matter of if but when. I wish Sharon and her family all the best in her battle against breast cancer.
Sources: CDS’s DES update, MedPageToday: DES Daughters at Higher Risk of Breast Cancer by Michael Smith.
Posted in DES Daughters, DES Research
Tagged anxiety, breast cancer, fear, health, mammogram, me, my DES journey, opinion, personal, stories
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DES, Guilt, Fear, and other Emotions
The results of a recent French study highlighting the psychological problems associated with exposure to Diethylstilbestrol (DES) and other synthetic sex hormones really confused me. Even though it may be extremely difficult to scientifically establish a strong link between DES exposure and mental health for many reasons, one just needs to read or listen to the stories of DES victims to realise how badly these victims have been affected not only physically but mentally. All these stories have one thing in common, they all tell a story of guilt, anxiety and fear.
Guilt: most DES mothers and daughters blame themselves
Emotions felt by DES victims include guilt, fear, anxiety, stress, anger, and frustration - image source Scientific American
How would you feel as a mum if because of a drug that you took during pregnancy, your child is suffering from cancer, fertility problems, and / or psychiatric disorders? Most mothers who took what was believed to be at the time a revolutionary drug to stop them miscarrying, are understandably feeling guilt and struggle in their day to day life to cope with the burden of this guilt pushing some of them to the brink of depression. Most of the time, it affects their relationship with their daughters and sons. Even though I get on really well with my mum, DES has definitely left a dark cloud on our relationship. A life with DES and its consequences is not what she wanted for me and my husband. For the great sadness deeply felt when I miscarried, all the tears when I thought I would never have a child, the stress of a surgery, the constant anxiety during a high risk pregnancy, how could I blame my mum when she was just following in good faith and trust her doctor’s prescription? Yet, she keeps feeling sorry for me and apologizing for all the troubles caused by Distilbène® (the French name under which DES was prescribed to pregnant women in France until 1977).
My mum, unlike many other DES mothers, didn’t grief a daughter killed by one of the most devastating side effects of diethylstilbestrol: vaginal cancer (ccac). She didn’t go through the psychological pain of accepting that she would never be a grandmother. I, unlike many other DES daughters, never gave birth to a baby born too early to survive because of premature labour (another dreadful consequence of DES exposure). With 3 daughters, I am one of the luckiest DES victims (at least so far …) and I often even question whether I should consider myself as a DES victim when so many women have died or have seen their chances of becoming a mum ruined by the consequences of this drug.
When I read in the book “Moi, Stéphanie, Fille Distilbène” by Stéphanie Chevalier, that I was not the only DES daughter feeling shame and guilt for somehow escaping the worst, it brought tears to my eyes. In her very moving book, Stéphanie tells her DES story but also the story of Véronique who despite a very difficult pregnancy gave birth to a beautiful little boy. Véronique says: “I feel bad that I had a son when so many DES daughters will never know the joy of motherhood”. Stéphanie explains what her lawyer, Mrs Martine Verdier, replied to the DES-exposed daughters and sons invited to discuss DES trials in a meeting organised by the French association “Les Filles Distilbène” of which Stéphanie is President: “There is no such thing as being a “half victim”. What differentiates the DES victims is the extent of the prejudice caused”. Before the joy of giving birth, some women miscarry; others loose a child in the late stage of their pregnancy, many never even have children and divorce as a result but what is sure is that DES-exposed individuals, regardless of the extent of the physical damage caused by the drug, all have to suffer from the psychological consequences of the painful situations that they have to face throughout their lives because of diethysltilbestrol.
To carry on the topic of guilt, what if the third generation (DES grandchildren) have been adversely impacted by DES? What if my daughters are at a higher risk of cancer, what if they too have uterine malformations and won’t be able to have children. Will I feel guilt? My mum didn’t know when she took Distilbène® what the consequences would be. When I had my daughters I knew I had been exposed to DES and I knew there may be consequences on the third generation too. Will they blame me? I don’t even want to think about it…
DES tragedy, who is to blame?
I definitely think the wrong persons are blaming themselves. But who is to blame for the DES tragedy? Doctors who continued to prescribe the drug despite warnings about its side effects? The FDA who didn’t ban it and today recognizes the DES tragedy but refuses to apologize to the victims? The pharmaceutical companies who heavily promoted DES use to doctors? Governments who failed to protect the health of their citizens when health warnings were issued? Am I missing someone? something? So many questions remain unanswered. Surely this drug scandal could have been avoided like many others such as Thalidomide (the sedative drug introduced in the late 1950s and withdrawned in 1961 due to teratogenicity and neuropathy). Surely other people than the DES victims should feel guilt and shouldn’t be sleeping well at night!
DES “Epée de Damoclés”
Anxiety and fear, two more psychological consequences DES-exposed individuals have to deal with. Because of the risks of cancer associated with DES exposure, DES daughters and mothers have to be checked more regularly than other women. I have no doubt that like me they all get very anxious and fear that the results of their regular DES examinations (including smear/pap test, mammogram, etc…) may be positive when they come in. What about the fear of losing a child at any time during a DES pregnancy, the fear of seeing your partner leaving you if you can’t give him a son or a daughter, the fear of what will happen to your children if you die from a cancer caused by DES? The list of these DES related fears and anxieties is long and I am not even mentioning all the other emotions such as anger and frustration often felt by DES victims.
Whilst some people may question the effects of DES exposure on mental health, there is no doubt that diethylstilbestrol has not only caused physical damages to the children born from mothers who took the drug during their pregnancy, but also caused a lot of pain, and psychological suffering in DES mothers, daughters, sons, and their families. Even if there wasn’t any link between DES exposure and mental health which I doubt, the psychological consequences of the problems that DES brought into people’s lives can’t be undermined. More research is needed to establish a link between DES exposure and mental health. In the meantime, the psychological difficulties such as anxiety disorders, depression due to the overwhelming feeling of guilt experienced by DES-exposed individuals must be acknowledged and health care providers should take them into consideration when caring for their DES patients.
Posted in DES and Media, DES Daughters, DES Mothers
Tagged anger, anxiety, depression, emotions, fear, frustration, guilt, health, me, opinion, personal, Stéphanie Chevalier, stories
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