frustration Archives - Diethylstilbestrol DES

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.

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.