Physicians can help the DES-exposed deal with their emotional issues
Abstract
The emotional impact of diethylstilbestrol (DES) exposure is described in a series of 50 mothers and daughters interviewed by psychiatrists. Patterns of response to this trauma and methods of resolution are discussed, and opportunities for preventive intervention by gynecologists are suggested. Specific, open dialogue about DES with the patient as a colleage can minimize the emotional sequelae of the experience.
PIP:
Observations on the psychological impact of diethylstilbestrol exposure and suggestions on management, US National Library of Medicine National Institutes of Health, The Journal of reproductive medicine, NCBI PubMed PMID: 7373597, 1980 Mar.
This study analyzes the emotional impact of diethylstilbestrol (DES) exposure in an index population consisting of 50 women at risk plus 30 mothers who were all interviewed about their DES experience in an open-ended, in-depth, clinical style. The findings show that significant emotional upset is the normal response to the knowledge that the ingestion of a drug during pregnancy can cause or has caused some abnormality in the offspring.
Nevertheless, the capacity of a woman to come to terms with the anxiety DES has generated, once she had been given the chance to express her feelings and fears, was impressive.
DES daughters reacted to the DES experience in one of 3 ways, in descending order of frequency:
trust (80%). Most DES daughters rationalized that their mothers and doctors did the best they could, and were generally cooperative in their follow-up care;
hostility (10%);
and fear (10%).
90% of DES mothers came to terms with the knowledge and implications of DES exposure in ways characteristic of their life-long personality styles; in contrast, the remaining 10% who did not come to terms with the reality of DES exposure felt overwhelmed by quilt, paranoid rage, fear, and despair.
Physicians can help patients deal with such problems by:
acknowledging problematical feelings and expecting them to be difficult to deal with;
noting the patient’s pattern of response, and supporting her strengths;
giving factural information matter-of-factly;
listening to reactions to this information;
giving a structured plan in which the woman participates and be available for follow-through on it (eg, periodic colposcopic examinations);
and referring the women to support groups for an extended network of information and continued support.
The scope of adverse effects in males exposed to diethylstilbestrol (also called DES sons) has been a lot less documented than the effects in females (read post “DES Sons Numbers and Health Concerns“). However, a number of studies have confirmed and identified that DES sons are susceptible to a wide range of medical adverse effects associated with prenatal exposure to diethylstilbestrol.
Studies on DES Sons Health Issues
The most common abnormality in DES sons is epididymal cysts. The likelihood of DES sons having epididymal cysts ranges from 21% to 30%, in comparison with 5% to 8% of unexposed men (Gill, 1988; Gill et al., 1979).The epididymis is a structure on the back of each testicle where sperm are stored. Epididymal cysts are non-cancerous growths that feel like small lumps. They may disappear and recur over time. They do not need to be treated unless they are painful. However, all lumps should be reported to a doctor and testicular self-exams should be performed on a monthly basis.
Most DES Sons are unaware of their exposure to Diethylstilbestrol
Testicular problems in some men exposed to Di-Ethyl Stilbestrol® include both small testicles and undescended testicles. Both of these abnormalities are visible at birth. Men with undescended testicles have an increased chance of developing testicular cancer, even if their mothers didn’t take Di-Ethyl Stilbestrol®. The only definitive prospective study to date of the association between in utero exposure to diethylstilbestrol and testicular cancer indicated that levels of testicular cancer were elevated, though not to a statistically significant extent, among DES-exposed men (Strohsnitter et al., 2001). The study found it unlikely that DES exposure is heavily associated with testicular cancer, but concluded that the findings did “lend support to the hypothesis that the prenatal hormonal environment may influence the development of testicular cancer in adults” and suggest follow-up study of DES men for increased risk of testicular cancer.
Some studies have also indicated that testicular varicoceles occur more often in DES sons than in other men. A varicocele is an irregularly swollen or varicose vein on the testicle. This enlarged vein produces a higher temperature than is normal for testicles, and over a period of years can lower the number of normal sperm as a result.
Studies of the psychological effects of DES exposure are limited, but evidence has been found that diethylstilbestrol is linked with increased likelihood of various psychological and neurological impairments. This includes anxiety, major depressive disorder, and other mood disorders (in DES sons and daughters).
Studies of cancer, heart disease, and autoimmune diseases among DES sons are ongoing.
Studies on DES Sons and Infertility
There has been some concerns amongst DES sons that their DES exposure might be linked to infertility. Although one study found a lower sperm count in men exposed to diethylstilbestrol compared with unexposed men (Gill, 1979), a 40-year follow-up study of DES sons found no increased risk of infertility among men exposed to DES before birth (Wilcox, 1995). The men in this study were all born between 1950 and 1953.
The health issues shared by DES sons include but are not limited to the above identified health problems. Prenatal exposure to Di-Ethyl Stilbestrol® is responsible for a wide range of not only medical but personal and social adverse effects. Further study and monitoring of these effects on men is critically needed.
If you suspect or know that you are a DES son, tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page. The scope of adverse effects in DES sons is less documented than the effects in DES daughters but you are not alone and support is available through the DES Sons International Network. Consider joining the DES community on facebook and twitter.
Have you ever thought like me that the DES nightmare was behind you? This week the sad and painful reality of DES exposure hit me again after reading a message from Sharon, a 39 years old DES daughter who has recently been diagnosed with breast cancer.
DES daughters 40 years old or older have nearly twice the risk of getting breast cancer
“I have never tried to tie together everything that I have been through with my exposure to diethylstilbestrol. I truly thought that since I was able to have a baby, that was all there was to the story” says Sharon.
Her Breast Cancer Journal really moved me and made me want to find out more about DES exposure and breast cancer risks. The information found on the Net did not reassure me and made me even more concerned and upset.
A 2006 study published in the August issue of the journal Cancer Epidemiology, Biomarkers & Prevention shows that DES daughters are at higher risk of breast cancer as they age than are women who weren’t exposed to diethylstibestrol. A DES daughter is already known to be at higher risk of clear cell carcinoma of the vagina and cervix and her mother has already been shown to be at higher risk of breast cancer. This study just highlights once more that the DES side effects can continue to affect the lives of those who have been exposed to the drug, long after exposure.
The finding of this study supports the hypothesis that one risk factor for breast cancer is prenatal exposure to higher than normal levels of estrogen which is the case for the children of the mothers who have been prescribed diethylstilbestrol during pregnancy. That theory has been around, but it has been difficult to study. Unfortunately for DES daughters, the DES tragedy offers scientists a direct way to test / confirm this hypothesis.
According to the study, DES daughters 40 or older have nearly twice the risk of breast cancer than women who have not been exposed. The rate ratio is even higher for women 50 and older, but the numbers of women in that group age were too few at the time of the study to make a precise estimate of risk.
In addition, having no children or having a first child at age 30 or older, which is often the case for DES daughters due to the infertility / pregnancy problems caused by diethylstilboestrol, also increases a woman’s risk of breast cancer.
The Centres for Disease Control and Prevention (CDC)’s DES Update encourages DES daughters to follow a regular schedule for breast cancer screening, be breast aware and practise self-examinations as a way to detect any lumps in the breasts. Scheduling mammogram examinations every 1-2 years for women 40 years or older is also highly recommended.
These screenings and examinations are not cheap procedures. I recently had to convince my GP to let me have PAP/Smear tests annually when the UK National Health Service (NHS) only recommends them every 3 years but I was told that I would have to pay for them. Luckily, I have a private health insurance who after a long and animated phone conversation agreed to cover for the cost of annual smear tests under a special personal health fund that I wasn’t aware existed in my policy. As per an annual mammogram examination, a bit more convincing is still needed before my physician confirms it is justified under my circumstances. The cost involved won’t be be covered unless I have symptoms which would justify a mammogram.
“We can’t be too safe. Interesting that your physician also says it’s no big deal. My fear is that many of them don’t understand it, and much of our medical care depends on the fact that they do” comments Sharon.
If I were a heavy smoker, the risk of cancer would be taken a lot more seriously and I would most probably not have to do all this convincing to have regular thorough health check-ups. My GP would not listen to me with that look on her face leaving me feel paranoid and hypochondriac. It raises the same question over and over again: what will it take for health care providers and the NHS (or the equivalent in other countries) to take DES daughters seriously and provide us with the preventive care and support we need? Don’t they know that people are suffering from cancer caused by DES exposure as I write this blog post? DES is not something of the past. Sharon’s breast cancer was diagnosed in January 2011. She was exposed to DES in 1971, like me.
So for those of us who may think the DES nightmare is behind us, think twice. A DES daughter must stay vigilant about breast cancer screening, including regular mammograms (if you can afford it), and be careful about using supplemental hormones. As Sharon too rightly says in her Breast Cancer Journal, the DES threat is always there, it is not a matter of if but when. I wish Sharon and her family all the best in her battle against breast cancer.
Sources: CDS’s DES update, MedPageToday: DES Daughters at Higher Risk of Breast Cancer by Michael Smith.
The results of a recent French study highlighting the psychological problems associated with exposure to Diethylstilbestrol (DES) and other synthetic sex hormones really confused me. Even though it may be extremely difficult to scientifically establish a strong link between DES exposure and mental health for many reasons, one just needs to read or listen to the stories of DES victims to realise how badly these victims have been affected not only physically but mentally. All these stories have one thing in common, they all tell a story of guilt, anxiety and fear.
Guilt: most DES mothers and daughters blame themselves
Emotions felt by DES victims include guilt, fear, anxiety, stress, anger, and frustration - image source Scientific American
How would you feel as a mum if because of a drug that you took during pregnancy, your child is suffering from cancer, fertility problems, and / or psychiatric disorders? Most mothers who took what was believed to be at the time a revolutionary drug to stop them miscarrying, are understandably feeling guilt and struggle in their day to day life to cope with the burden of this guilt pushing some of them to the brink of depression. Most of the time, it affects their relationship with their daughters and sons. Even though I get on really well with my mum, DES has definitely left a dark cloud on our relationship. A life with DES and its consequences is not what she wanted for me and my husband. For the great sadness deeply felt when I miscarried, all the tears when I thought I would never have a child, the stress of a surgery, the constant anxiety during a high risk pregnancy, how could I blame my mum when she was just following in good faith and trust her doctor’s prescription? Yet, she keeps feeling sorry for me and apologizing for all the troubles caused by Distilbène® (the French name under which DES was prescribed to pregnant women in France until 1977).
My mum, unlike many other DES mothers, didn’t grief a daughter killed by one of the most devastating side effects of diethylstilbestrol: vaginal cancer (ccac). She didn’t go through the psychological pain of accepting that she would never be a grandmother. I, unlike many other DES daughters, never gave birth to a baby born too early to survive because of premature labour (another dreadful consequence of DES exposure). With 3 daughters, I am one of the luckiest DES victims (at least so far …) and I often even question whether I should consider myself as a DES victim when so many women have died or have seen their chances of becoming a mum ruined by the consequences of this drug.
When I read in the book “Moi, Stéphanie, Fille Distilbène” by Stéphanie Chevalier, that I was not the only DES daughter feeling shame and guilt for somehow escaping the worst, it brought tears to my eyes. In her very moving book, Stéphanie tells her DES story but also the story of Véronique who despite a very difficult pregnancy gave birth to a beautiful little boy. Véronique says: “I feel bad that I had a son when so many DES daughters will never know the joy of motherhood”. Stéphanie explains what her lawyer, Mrs Martine Verdier, replied to the DES-exposed daughters and sons invited to discuss DES trials in a meeting organised by the French association “Les Filles Distilbène” of which Stéphanie is President: “There is no such thing as being a “half victim”. What differentiates the DES victims is the extent of the prejudice caused”. Before the joy of giving birth, some women miscarry; others loose a child in the late stage of their pregnancy, many never even have children and divorce as a result but what is sure is that DES-exposed individuals, regardless of the extent of the physical damage caused by the drug, all have to suffer from the psychological consequences of the painful situations that they have to face throughout their lives because of diethysltilbestrol.
To carry on the topic of guilt, what if the third generation (DES grandchildren) have been adversely impacted by DES? What if my daughters are at a higher risk of cancer, what if they too have uterine malformations and won’t be able to have children. Will I feel guilt? My mum didn’t know when she took Distilbène® what the consequences would be. When I had my daughters I knew I had been exposed to DES and I knew there may be consequences on the third generation too. Will they blame me? I don’t even want to think about it…
DES tragedy, who is to blame?
I definitely think the wrong persons are blaming themselves. But who is to blame for the DES tragedy? Doctors who continued to prescribe the drug despite warnings about its side effects? The FDA who didn’t ban it and today recognizes the DES tragedy but refuses to apologize to the victims? The pharmaceutical companies who heavily promoted DES use to doctors? Governments who failed to protect the health of their citizens when health warnings were issued? Am I missing someone? something? So many questions remain unanswered. Surely this drug scandal could have been avoided like many others such as Thalidomide (the sedative drug introduced in the late 1950s and withdrawned in 1961 due to teratogenicity and neuropathy). Surely other people than the DES victims should feel guilt and shouldn’t be sleeping well at night!
DES “Epée de Damoclés”
Anxiety and fear, two more psychological consequences DES-exposed individuals have to deal with. Because of the risks of cancer associated with DES exposure, DES daughters and mothers have to be checked more regularly than other women. I have no doubt that like me they all get very anxious and fear that the results of their regular DES examinations (including smear/pap test, mammogram, etc…) may be positive when they come in. What about the fear of losing a child at any time during a DES pregnancy, the fear of seeing your partner leaving you if you can’t give him a son or a daughter, the fear of what will happen to your children if you die from a cancer caused by DES? The list of these DES related fears and anxieties is long and I am not even mentioning all the other emotions such as anger and frustration often felt by DES victims.
Whilst some people may question the effects of DES exposure on mental health, there is no doubt that diethylstilbestrol has not only caused physical damages to the children born from mothers who took the drug during their pregnancy, but also caused a lot of pain, and psychological suffering in DES mothers, daughters, sons, and their families. Even if there wasn’t any link between DES exposure and mental health which I doubt, the psychological consequences of the problems that DES brought into people’s lives can’t be undermined. More research is needed to establish a link between DES exposure and mental health. In the meantime, the psychological difficulties such as anxiety disorders, depression due to the overwhelming feeling of guilt experienced by DES-exposed individuals must be acknowledged and health care providers should take them into consideration when caring for their DES patients.
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Most DES Sons are unaware of their exposure to Diethylstilbestrol
