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 image
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

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

Caitlin McCarthy cover page Boston Globe image
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.

Caitlin McCarthy ImageABOUT 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 copyright Alberto Sebastiani, DES Aware Doctors wanted image
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.

DES Aware Doctors wanted, Saskia ou le deuil d'un bébé Distilbène image
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.

Breast Cancer Awareness pink ribbon image
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.

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

DES-exposed individuals' emotions guilt, fear, anxiety, stress, anger, and frustration image
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.

International Women’s Day

Celebrate DES mothers & daughters who advocate for all DES victims!

Tuesday 8th March 2011 marks the centenary of International Women’s Day (IWD). Celebratory events are taking place across the world marking women’s achievements and contributions to society.

Since 1911, International Women’s Day offers the perfect opportunity to appreciate the women who have the biggest influence in our lives whether they are politicians who are a making difference in our local community, celebrities we admire, or simply mums and grandmas who balance work and home beautifully or to whom we look up to.

This Tuesday 08th March, why not make International Women Day 2011, a day to celebrate DES mothers and DES daughters.

Join “Journal of a DES Daughter” in celebrating the courage of all the women who find the strength to fight every day against the devastating side effects of diethylstilbestrol and acknowledging the tremendous work of those who dedicate their lives to advocate for the victims of the DES tragedy.

Join the International Women’s Day celebrations by:

  • Attending the Facebook event “Journal of a DES Daughter – International Women’s Day”
  • Changing your facebook status to read: “Today I celebrate International Women’s Day and the DES mothers and daughters who advocate for all the DES victims”.
Val Pat Cody DES Action USA co-founder image
Val Pat Cody, health activist and DES Action USA co-founder – Photo courtesy of DES Action USA

Let’s celebrate women such as Val Pat Cody (health activist and co-founder of DES Action USA who sadly passed away in September 2010), Anne Levadou (President of DES Network France), Andrea Goldstein (DES activist and DES historian), Carol Devine (founder and coordinator of DES Action Australia – NSW) and Caitlin McCarthy (award winning screenwiter currently working on Wonder Drug the true story of DES); as well as all the activist women who contribute to raising awareness about DES exposure and speak out on behalf of all the DES victims.

These women who give their lives to help others are a true inspiration to me and I am sure to many of us. Carol Devine comments on her blog: “Pat was a remarkable women. During the process of our establishing DES Action Australia-NSW, Pat was a great mentor and friend. If not for her invaluable ideas and encouragement, the group may not have lifted off the ground. She will be very much missed“.

Join the “Journal of a DES Daughter International Women’s Day” facebook event.

Happy International Women’s Day to all DES mothers and daughters!

My DES Daughter Journey – Doctors

You’ve been exposed to DES in-utero, so what?

When I miscarried in 2001, I rushed to my general practioner (GP) to tell him that I had been exposed to diethylstilbestrol before birth in my mum’s womb. She had been prescribed the Distilbène® throughout her pregnancy. My GP knew very little about prenatal DES exposure and its side effects. I contacted DES Action UK who kindly sent him their leaflets and newsletter. They also provided him with the details of four UK consultants (yes, only four!) who have taken a close interest in DES drugs.

Below are a few quotes from letters of doctors and consultants I saw after I had a hysterosalpingogram in France in 2001.

January 2002:
Dr B., my GP, in a letter to Dr W. says: “This French lady has been informed by her French gynaecologist that her uterine cavity is too small and irregular. Also, her fallopian tubes did not show on a hysterosalpingograph (…) she was told she requires a hysteroscopy and laparoscopy.

February 2002:
Reply from Dr W.’s Appointments Office: “Mr W. has a waiting list of approximately 20 weeks whilst we are making every effort to shorten his list we are not at this time able to allocate you a firm appointment date”.

Response dated February 2002 from Dr M. to a letter I sent him to ask for his advice in January of the same year: “I read with interest your letter and the details of your investigations in France. This certainly raises the possibility that you have an abnormally shaped womb. Such abnormalities do occur sporadically but there is an increased risk in someone who has been exposed to DES (…) This condition is in no way dangerous to your health. (…) It is possible that this abnormality contributed to your recent miscarriage but it is equally possible that the problem was related to some developmental disturbance in the pregnancy itself which is a far more common cause of miscarriage. (…) Before advising any treatment for this suspected abnormality I think we would need much more concrete evidence that it is contributing to miscarriage”.

Dr M. continues: “There are two ways to approach this, either we could be pragmatic and advise you to try for another pregnancy (…) alternatively, if you have further miscarriage we could investigate further (…) You are right that it is highly unlikely that you will receive treatment on the NHS for many months”.

March 2002:
So I applied to the Department of Health for an E112 for investigations to be carried out in France. My application was denied: “With regret, I am unable to approve your application. Approval for an E112 is normally given only in situations where, for clinical reasons, the local health service provider is unable to provide the patient care required (…) I was unable to established that although DES may perhaps be more commonly investigated in France, it is entirely appropriate for the procedures and care required for your case to be provided by our local health services”.

So basically, I had to wait for an appointment with Dr W., try for another baby and see what happens!!!! You’ve been exposed to DES, so what? Doctors needed more evidence that it was contributing to miscarriage. How could I try again for a baby with such a worrying result from the hysterosalpingogram? I arranged for a hysteroscopy and laparoscopy to be carried out later (September 2002) in France.

July 2002:
Dr W.’s Appointments Office: “Further to our phone conversation today, I am writing to confirm the private appointment for you to see Mr W. on Thursday 4th July at the Bristol Nuffield Hospital. The cost of your appointment will be £160”.

I was pleased to see you for your consultation at the Bristol Nuffield Hospital last week (…) I would suggest you telephone the fertility clinic at Southmead in the near future to arrange a follow up appointment with me after you will have had your laparoscopy and hysteroscopy operation with Professor Frydman.” comments Mr W.

In a letter Dr W. wrote to my GP: “Mrs A. was understandably concerned about the result of her hysterosalpingogram (HSG) and the suggestion that she might have bilateral tubal blockage. She was also concerned about the possible risks of a further miscarriage as a result of her DES exposure in-utero (…) I am not convinced that the HSG show a true tubal occlusion (…) The cavity of the uterus appears normal, apart from being rather excessively distented in the later stages of her HSG examination (…) Although there is no doubt that in-utero exposure to DES increases risk of miscarriage and the risk of premature delivery, the vast majority of women in this situation do have successful pregnancies. The risks are higher if there is any structural abnormality of the shape of the uterine cavity and this does not seem to be the case from Mrs A.’s hysterosalpingogram”.

September 2002:
A hysteroscopy and laparoscopy performed by Pr. Frydman in France confirmed a uterine malformation, a T-shape uterus with a septate which was removed by surgery during the examination.

October 2002:
Dr W. comments: “I understand that her laparoscopy showed a normal pelvis with patent fallopian tubes. Her hysteroscopy demonstrated a 3cm-long septum which has been partially resected with a Versapoint”.

I returned to France to see Dr T. for a follow-up appointment. She confirmed: “The hysteroscopy and laparoscopy show a typical DES uterus. However the uterine cavity is acceptable thanks to the fact that the septum has been resected.

Dr T. explained that even though the uterine cavity was large enough to envisage a pregnancy there was a high risk of premature labour.

September 2003:
2 years after I miscarried, I gave birth to a beautiful baby girl, thanks to Pr. Frydman.

My DES Daughter Journey – Introduction

My DES journey started with a miscarriage. When I started bleeding after 11 weeks of pregnancy,  I vaguely remembered what my mum told me when I was a teenage girl about the DES drug she had been prescribed when she was pregnant which may prevent me from having normal pregnancies or even worst from knowing the joy of being a mum. When I miscarried,  this information kept somewhere in the back of my mind came back at once.

Being diagnosed DES daughter meant I would most likely never be able to experience the joys of pregnancy and motherhood. I may never give a daughter or son to my husband; grandchildren to my parents and in-laws. Additionally, I may be under higher risks of developing other health problems such as cancer. I was promised to live the rest of my live with fear, stress, anxiety and guilt to name just a few of the many emotions that went trough my mind the day I was first called .

Making UK doctors and consultants accept to further investigate the reason why I miscarried considering my DES exposure was a lost battle. I was told that it was highly unlikely that I would be able to receive treatment on the NHS (National Health Service) for many months; I should be pragmatic and try for another baby. Since I knew I had been DES exposed, I couldn’t possibly take the risk and put myself through this pain again.

So I returned to France to have first a hysterosalpingography (an infertility test that shows whether both fallopian tubes are open and whether the shape of the uterine cavity is normal) and then an hysteroscopy and laparoscopy (procedure that allows a surgeon to examine the fallopian tubes, ovaries and womb to diagnose and treat a condition). I was very lucky to have both examinations performed by eminent specialists aware of the consequences of DES exposure. The results confirmed a septate and T-shape uterus – uterine malformation typical of daughters whom mothers had been prescribed diethylstilbestrol during their pregnancy.

My womb was like two tiny rooms with a wall in between. No baby would have enough room to grow if the septum was not removed to make a proper home for him to develop and spend 9 months of his life. Professor René Frydman who performed the operation removed the septum and changed my uterus to a room big enough for a baby to develop even though there would still be a high risk of complications and miscarriage due to its shape and other DES related injuries.

Pr. Frydman, obstetrician-gyneacologist and head of the “Male-Couple-Embryo-Children Hospital“, gave birth in 1982 in Clamart to the first French test-tube baby, Amandine, less than four years after the birth of the world’s first baby conceived by IVF, Louise Brown in July 25, 1978 in Great Britain.

When I returned to the UK with the green light to try again for a baby, the battle intensified with health care providers to make them accept to monitor my DES pregnancy and treat me like any DES daughter should be treated.

So I desperately turned to DES Action UK and Réseau DES France for help and support. This is when my DES journey as a DES daughter really started, even though my mum had warned me when I was just a teenage girl about this wonder drug and its consequences. All her fears and what I thought was just paranoia from a loving and caring DES mother were justified. There was no more doubt. I was, I am a DES daughter.

The journey started with a miscarriage and an operation. Now my DES journey is taking a new start with my Journal of a DES Daughter Blog and Diethylstilbestrol facebook page. In between, many tears, fears, many hopes, successes, and three beautiful daughters… The journey continues as concerns for my daughters (DES third generation) arise…