My DES Daughter Journey – Interview with June Stoyer

 

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

Distilbène®: 20 Years of Legal Battle

Distilbène® is the trade name for a synthetic hormone (also known internationally as DES or diethylstilbestrol) prescribed in France between 1950 and 1977 to pregnant women to prevent miscarriages. In 1977, 6 years after the U.S. Food and Drug Administration (FDA) advised physicians to discontinue prescribing diethylstilbestrol to pregnant women because of its link to a rare vaginal cancer, UCB Pharma (the manufacturer of Distilbène® in France) decided to make public that the use of this drug was contra-indicated in pregnant women.  It is estimated that 200,000 French mothers have been prescribed DES and have given birth to 160,000 DES exposed daughters and sons. The number of children whose grandmother were given DES during pregnancy (DES 3rd generation) is yet to be assessed.

DES lawsuit lawyer imageEven though many French women have suffered from the devastating side effects of Distilbène®, very few have understandably taken their case to court. DES trials are long, complicated, expensive and painful for the DES victims and their families. Battling in court against giant and powerful pharmaceutical companies is not an easy thing to do when you also have to deal with health issues such as cancer and infertility linked to your DES exposure.  According to Mrs. Martine Verdier, French lawyer who specializes in DES court cases, only 150 to 170 lawsuits have been initiated by Distilbène®’s victims over the past fifteen years. Until 2009, many DES daughters who had filed lawsuits against UCB Pharma and Novartis who respectively distributed Distilbène® and Stilbestrol-Borne® in France were unsuccessful because they were unable to produce the documents proving that their mum had been prescribed the toxic and carcinogenic drug diethylstilboestrol.

A few landmarks in the French DES legal battle history

1991:

  • First lawsuits against UCB Pharma from French women with genital cancers whose mothers had been prescribed Distilbène® during pregnancy (14 years after Distilbène® stopped being prescribed in France and 20 years after DES stopped being prescribed in the USA).

2002:

  • May 24th – Victory for two DES daughters. After eleven years of court battle, the Tribunal of Nanterre recognizes UCB Pharma’s responsibility in the cancer developed by two DES victims. They are granted 15,244 euros in damages. UCB Pharma makes an appeal against the court decision.

2004:

  • April 30th: The Court of Appeal of Versailles confirms the responsibility of UCB Pharma in the 2002 above cases.
  • The number of lawsuits increases. However the court decisions remain inconsistent because of the difficulties for victims to prove the link between their cancer and Distilbène®.
  • December 17th: The Tribunal of Nanterre condemns UCB Pharma to pay 310,000 Euros in damages to the family of a deceased DES victim before the end of the procedure.
  • December 21st: A women who has developed cancer is unsuccessful in Marseille. The court says she can not prove that her mother was prescribed Distilbène® so no link can be established. Yet her body affected by this rare vaginal cancer called adenocarcinoma, so typical of DES exposure, is the ultimate proof. She appeals.

2006:

  • March 08th – The Court of Cassation confirms the responsibility of UCB Pharma in the Marseille court case.
  • March 19th – Three women won their cases against UCB Pharma and Novartis, who had requested the cancellation of the court decision during an appeal in a view to request an expertise, arguing that the victims should have provided the original DES prescriptions.
  • October 13th – The Court of Nanterre condemns UCB Pharma to pay 344,000 euros to the family of a young woman who died of cancer before the end of her trial.

2009:

  • September 24th – Turning point – The Supreme Court reverses the burden of proof, forcing UCB Pharma and Novartis to prove that their product is not responsible for the health issues of the DES victims who are taking their case to court. It is a massive step forward in the history of French DES legal battles since it allows women not to be dismissed when they can’t show proof that diethylstilbestrol have been prescribed to their mum. The Court however, gives victims who can’t show the original drug prescription the opportunity to pursue either Novartis or UCB Pharma and claim for compensation. The pursued laboratory now has to prove that the victims did not take their drug, but the competitor’s. UCB Pharma distributed Distilbène® which was by far the main drug used in France whilst Novartis distributed Stilbestrol-Borne®. So it is expected that the battle between UCB Pharma and Novartis is going to be fierce. Novartis won’t want to share responsibilities and compensations costs when their drug’s sales represented only 2% of the market share compared to 98% for UCB Pharma.
  • The same year, the Court also condemns UCB Pharma to pay “compensation provisions” of 70,000 Euros to a young disabled girl of 12 and 60,000 Euros to her parents.

2011:

  • June 09th – First victory for DES third generation – The Versailles Court of Appeal confirms the decision of the Court of Nanterre made in April 2009 and recognizes a link between taking Distilbène® and disability in the third generation, giving the grandson of a woman who was prescribed Distilbène® 1.7 million Euros in damages.

I wish the decision of the Court of Appeal of Versailles will encourage other victims to engage in this legal battle but it takes more than courage to file a lawsuit for such a complex and difficult journey against what seems to be a lost battle. I really admire the victims and their families who took their DES cases to court and thank them, as well as their lawyers, for allowing justice to make progress not only for them but for many other victims who may consider going to court in the future.

Distilbène®: 20 Years of Legal Battle is just a quick overview of the main dates in the history of DES French lawsuits. These lawsuits won’t bring back the DES daughters who died from cancer to the families affected by di-ethyl stilbestrol. They won’t repair the long term damages of this toxic drug but if nothing else they show that DES is not something invented by the media, or something that DES exposed individuals, like myself, should feel guilty about. We are victims and we deserve that justice is made.

I am missing important information and this blog post doesn’t highlight enough the pain and suffering the victims and their families had to go through to seek justice and get compensation. If you are considering filing a DES lawsuit make sure you seek expert advice and professional support from your local DES Action group.

Sources: Réseau DES France, Le Point.fr

More DES DiEthylStilbestrol Resources

NEW: YouTube DiEthylStilboestrol’s Channel

In a bid to even further raise awareness about the DES issues, and help you find more (easily and/or faster) DES videos, we’ve created a new DES YouTube page.

YouTube diethylstilboestrol's channel image
NEW: find your DES Videos on YouTube DiEthylStilboestrol's Channel

YouTube is an online video management and sharing application. Its primary goals are to help people make videos available to those who matter to them, and to enable new ways of organizing short films. It offers the perfect platform to share videos from around the world.

Playlist: DES Videos in English

YouTube DES Videos in English language playlist image
Find DES videos in English language re-grouped here

 

  • Easily find your DES videos in English language.
  • Original films (with original title, description & content) from five different YouTube users have been re-grouped here.
  • Diethylstilbestrol, Journal of a DES Daughter is NEITHER responsible for any of the content published, NOR trying to misguide web surfers on who the real video makers/owners are; their name being clearly mentionned.
  • Please contact us if you have other links or videos to share.
  • If you already have a YouTube account, click on Subscribe to be notified when new content is being added to this channel .

Playlist: DES Vidéos en français

YouTube DES Videos in French language playlist image
Touvez des vidéos en langue française sur le Distilbène® ici

 

  • Trouvez facilement vos vidéos en langue française sur le Distilbène®.
  • Les films originaux (inclus titres, descriptifs et contenu originels) de six utilisateurs YouTube différents ont été regroupés.
  • Le Blog Diethylstilbestrol, Journal of a DES Daughter n’est ni responsable du contenu publié, ni susceptible de vous induire en erreur sur l’identité des véritables réalisateurs des films; leur noms étant mentionnés.
  • Contactez-nous si vous avez d’autres liens ou vidéos à partager.
  • Si vous possédez un compte YouTube, cliquez sur S’abonner pour recevoir une notification si une vidéo supplémentaire est mise en ligne .

Join us:

We would like to invite all DES support groups and activists to collaborate to this project by contributing films to the new DiEthylStilboestrol’s YouTube Channel created and administered by Diethylstilbestrol, Journal of a DES Daughter. If you haven’t done it yet, you can also:

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

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 National Public Education Campaigns

Listen to the short radio interview featuring Carol Devine, founder and coordinator of DES Action Australia (NSW), and Dr Jules Black, Queensland Gyneocologist and sexuality expert, about the silence around the DES issue and the difficulties to push for a much needed Australian DES National Public Education Campaign 10 years after the USA first DES national campaign launched in 2001. In Australia it is estimated that 740,000 people have been exposed to DES diethylstilbestrol, yet no such campaign has been held. These people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.

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Culture of Silence on sex hormone link to cancerRadio Interview about DES featuring Carol Devine and Dr Jules Black, produced by Annamarie Reyes April 05th, 2011.

Below is a short summary and a few quotes from this interesting radio interview from down under:

DES National Public Education Campaigns or the Wall of Silence

The USA has moved to legislate to make it compulsory that a DES National Public Education Campaign is held for DES affected communities. Dr Black explains that the USA acting first on public campaigns came out of increased pressure amongst affected women in the number of millions. In Australia he says “I found constantly with my patients a wall of silence”.

“Since the Food and Drug Administration approved this drug it was important for them to make sure this drug was ok (…). It wasn’t (…). There was a certain degree of cover up fear at first but then when the story came out and due to pressure by female organisations, support groups and so on, they admitted”, comments Dr Black. The FDA acknowledged the DES tragedy 40 years after they issued a warning about the DES cancer link.

The equivalent support group in Australia pushing for change is DES Action Australia (NSW). Carol Devine, the coordinator, explains the strugle to put the issue on the public agenda since the 1970’s when the issue came to light. The USA could not keep it quiet anymore. Too many people were affected by Diethylstilbestrol exposure. The USA went as far as holding a DES National Public Education Campaign in 2001 which led to legislate that research should happen and DES and potential DES affected people should be informed. “Over there”, comments Carol Devine, there is a fantastic body of women called DES Action USA. They are all right behind making sure these things happen in the USA”. In Australia, Carol Devine sent all the documentation papers about the USA DES National Public Education Campaign to the Australian Federal Health Minister. A few days later she received the package back in her doorstep saying “We do not require these”. “It has been a total shut down on this issue in Australia and quite frankly this is a national disgrace” comments Carol. Advocates in Australia have no choice but take the matters to the Human Rights Commission.

What’s the situation in France and Europe?

Reseau DES France educational brochure front cover image

In France and in other parts of Europe, the FDA warning issued in 1971 about the health concerns related to Di-ethyl Stilbestrol didn’t get heard and the drug continued to be prescribed to pregnant women until the late 1970’s early 1980’s. The support group Réseau DES France was established in 1994. Their first DES public education campaign was launched in 1997 with the brochure “DES Distilbène® Exposure, the questions you ask yourself” aimed at raising DES awareness amongst the general public. Since 1994 Réseau DES France has engaged in many areas (information, cooperation, advocacy and lobbying, and DES lawsuits to name just a few). They’ve achieved many results and successes such a the right to longer maternity leave for DES pregnancies.

In the United Kingdom, Ireland and the Netherlands support groups have also been created. DES Action UK launched a petition in 2009 to demand a Public Enquiry aimed at investigating the effects of the drug diethylstilboestrol (DES) on women. They collected 130 signatures. “The government statistics are hopelessly out of date and information is not freely or widely made available by the government” write the petition creators Nick de Bois and Barbara Killick.

I can’t stress enough the importance and crucial need for efficient DES National Public Education Campaigns to ensure all people affected by DES exposure are aware of its side effects for them and their children. Collaboration between DES Action groups is also very important. The silence around the DES issue poses health risks in itself as many people including doctors don’t even know what DES is, what the health risks are, and how to prevent them. With so many people affected by it, and so few aware that they have been exposed, it is the responsibility of our governments to raise public awareness of this global health catastrophe.

I wish DES Action Australia (NSW) the very best of luck with their battle for an Australian DES National Public Education Campaign and hope more DES daughters and sons will make their voice heard. We are not alone in this; Millions of people around the world have been exposed to DES so surely if we shout loud enough we will be heard not only by governments but also by fellow DES victims unaware of their DES exposure and its health risks.

Sources: Réseau DES France, DES Action Australia (NSW), DES Action UK

French study reveals more damaging DES side effects

Diethylstilbestrol (Distilbène), the synthetic sex hormone prescribed in France up to 1977 (and in many other countries under different names) to pregnant women to prevent miscarriage and premature labour, has caused genital abnormalities, infertility problems, and cancer in children exposed in utero to the drug. A new report reveals that DES may have done even more damage, often associated in cocktail with other estrogens as 17-alpha Ethinyl oestradiol (synthetic EE) or with synthetic Progestin.

Distilbène® DES psychiatric disorders image
Click to watch the M6 Actu DES news in French

A disturbing study conducted since 2004 by Marie-Odile Soyer-Gobillard, former director emeritus at the CNRS (French National Center for Scientific Research) reveals a link between DES and mental illness issues. In January 2011, and next in October 2011, 6 members of the association Hhorages (Halt to Synthetic Hormones for Pregnancies), of which Marie-Odile is the president, were received by the AFFSSAPS (the equivalent of the Food and Drug Administration in the U.S. now named AFSM, French Agency for Medicament Security) to discuss her findings. A working group composed of experts from the agency and the association will now be formed in April.

DES Psychological Side Effects New French Stats

So what does the French study (published in the International Journal “Medicine and Longevity*) reveal? Marie-Odile sent questionnaires to 529 DES mothers and studied a group of 1180 children of which 740 have been exposed to DES in-utero. Of this group, 15 were still born and 684 suffer from psychiatric disorders and / or physical malformations while 41 were not ill. Amongst the studied population, the psychiatric illnesses are essentially depression, anorexia, schizophrenia, …). Today, Hhorages tots up 1223 testimonies representing 1223 mothers with a total amount of 2674 children. Amongst them, 1676 were in utero exposed to synthetic hormones, 1549 exposed children are ill: amongst them: 916 present psychic diseases « only », 448 present somatic and psychic diseases , 183 present somatic diseases « only »; 126 exposed are not ill. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders …. Could this be just a coincidence?

Another shocking statistic: of all the cases reported since 2004, when the study started, Marie-Odile identified 150 suicide attempts series and 48 suicides. In some families, 2 or 3 children have ended their lives leaving their parents with a profound sense of guilt. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders… Could this be just a coincidence?

Herself DES mother, Marie-Odile Soyer-Gobillard has been fighting since 1998 for the recognition of the link between synthetic sex hormones taken during her pregnancy including Distilbène®, and the psychological disorders of her own children, Nicolas and Valerie, who both committed suicide three years apart in 1995 and 1998 at age 28 and 27. She founded the association Hhorages with 3 other mothers in 2000 to raise awareness of the risks synthetic sex hormones prescribed during pregnancy pose on children born from these pregnancies.

According to Fran Howell (Executive Director DES Action USA), American researchers have been having trouble finding a solid link between DES and mental illness issues, except depression. But through the years DES Action USA have heard many reports of DES-exposed individuals suffering with psychological issues.

Pat Cody, co-founder of DES Action USA, wrote in the spring 2005 issue of VOICE (DES Action Newsletter) about why it is difficult for researchers to study these questions and develop definitive answers: “Here, some of the difficulties in getting a valid study are caused by a wide spread in the DES dosages mothers got, in the time in pregnancy when they got it, and for how long they took it (…). Sex hormones are, however, known to have effects on the organization of the brain in experimental animals with consequential behavioural effect”.

Distilbène® DES psychiatric disorders image
Click to watch the M6 Actu DES news in French

A 2005 study carried out by Professor Caston, a neurologist at the University of Rouen (France), has demonstrated that rats born to mothers treated with synthetic sex hormones developed anxiety and depressive behaviour. “These results could be explained by the effect of the molecule on the part of the brain involved in emotional processes, which is under development in foetuses”, the report says.

Could all the known DES side effects which have destroyed the lives of many DES mothers, daughters, and sons, just be the top of the iceberg? Already concerns for the grandchildren of DES mothers arise with a higher risk of hypospadias (misplaced opening of the penis) in sons of DES daughters. If more DES side effects are scientifically validated, DES could well be a real time bomb!

I welcome Marie-Odile’s research study and thank her and Hhorages for their combat and work on behalf of all the DES victims who suffer from the mental side effects of this drug.

More research is critically needed not only to provide DES-exposed individuals with appropriate care and support but for the next generation and all the people who may continue to suffer from the physical or mental consequences of this drug in the future. Please support Hhorages and your local DES Action group, and stay tune for more revelations about DES exposure and its devastating side effects.

Sources:

  • DES Action USA Voice newsletter spring 2005
  • DES Action USA
  • Viva Presse.fr
  • M6Bonus.fr
  • Hhorages.

Notes:

*Soyer-Gobillard, M.O. 2011. Endocrine disrupters and effects on behavioral disorders: No, we have not as yet learnt all our lessons concerning the DES story. Médecine et Longévité, (Elsevier Masson), 3, 67-74.
** Nicolas Kalfa, M.D., Ph.D,.Francoise Paris, M.D., Marie-Odile Soyer-Gobillard, Ph.D., Jean-Pierre Daures, M.D., Ph.D. and Charles Sultan, M.D., Ph.D. Prevalence of hypospadias in grandsons of women exposed to diethylstilbestrol during pregnancy: a multigenerational national cohort study. Fertil Steril, 2011, 95, 2574-2577(published by American Society for Reproductive Medicine).

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…