Physical and psychological problems associated with exposure to DES
1988 Study Abstract
The synthetic hormone diethylstilbestrol (DES) was widely prescribed between 1943 and 1971 to minimize pregnancy complications.
It has caused serious physical and psychological damage to the women who took it and to their offspring. DES-exposed mothers may suffer a higher incidence of breast cancer, their exposed daughters are at risk for reproductive tract cancers and infertility, and their exposed sons are more likely to have genital abnormalities and reproductive dysfunction.
Depression and diethylstilbestrol exposure in women, US National Library of Medicine, Hospital & community psychiatry, NCBI PubMed PMID: 3276594, 1988 Jan.
Psychiatric disorders among DES-exposed persons are reportedly twice as common as for nonexposed persons, with anger, anxiety, low self-worth, identity confusion, and guilt the most frequent symptoms. The author describes therapeutic interventions designed to alleviate these problems.
Screening and Management of Diethylstilbestrol Exposed Offspring
Prenatal diethylstilbestrol (DES) exposure in pregnancy has been associated with adenocarcinoma of the vagina and/or cervix as well as teratogenic abnormalities of the genital tract in both female and male offspring. DES Action groups are alerting the public to the dangers inherent in being a `DES daughter‘ or a `DES son‘. Family physicians must be able to reassure those patients who are not DES offspring, manage those who are, and detect those who didn’t know they were. The screening and management of DES problems, including history-taking, physical examination, relevant laboratory exams and consultation for diagnosis and treatment of both male and female patients are discussed. In addition, psychological support, patient education, longterm follow up, the management of contraception and pregnancy in DES daughters, and infertility in DES sons are considered.
Management Of DES-Exposed Male Patients : Psychological Support
Screening and Management of Diethylstilbestrol Exposed Offspring, US National Library of Medicine, National Institutes of Health, The College of Family Physicians of Canada, NCBI PubMed PMC2153721, 1984 Aug; 30.
Helping families cope with DES-induced abnormality and pathology involves dealing with the family’s and patient’s anger at the medical profession for having led them into this situation. The family doctor has to function in an agonized setting where the cardinal rule ‘first do no harm‘ has been violated.
It also involves helping assuage the mother’s guilt at having collaborated in a treatment which has brought hazard or harm to her children. She must be made to understand that the responsibility rests with the medical profession, one of whose members prescribed a treatment that was generally considered appropriate at the time. A good support for the patient and family is DES Action Groups which provide information and readily available self-help groups.
Where genital abnormality or genital surgery has led to sexual problems, the family physician may have to refer the patient to sexual counsellors and therapists with experience in sexual therapy and rehabilitation.
The seventeenth-century philosopher, Rene Descartes, called medicine “a science that was forced into practice too early“. Implications in some articles we have read in the public press are that doctors gave DES to pregnant women out of some combination of callousness, stupidity and monetary greed. In fact, doctors gave DES to pregnant women who were likely to suffer a spontaneous abortion because it was believed DES might prevent miscarriage.
In retrospect, however, it is important to try and understand why doubleblind studies done in the early 1950s, concluding that DES was ineffectual in maintaining pregnancies at risk, were largely ignored. One answer seems to be that physicians as a group rely too heavily on the pharmaceutical industry’s advertising and not firmly enough on objective research in evaluating the medications we use. The medical profession’s tragic experience with DES should lead us to constantly examine the process of drug evaluation and take steps to control the pharmaceutical industry’s influence on evaluative trials and the dissemination of drug information.
Reading the DES Action literature, one sees, understandably, a lot of anger towards the medical profession. However, despite this background of bitterness, one frequently hears DES patients’ unqualified expressions of appreciation and admiration for the doctors who are presently caring for them.
It is incumbent upon us not to neglect the detection and treatment of DES-induced abnormality and disease. The tools for this task are continual attention to the facts of DES-induced disease as they continue to emerge, and the two basic maneuvers of sound medicine: a good history and a thorough physical examination.
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
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.