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.

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.

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…