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.

7 Replies to “DES, Guilt, Fear, and other Emotions”

  1. I have seen in research papers about DES and mental health, that the control group consists of women who are experiencing abnormal Pap tests. This way, the base line for anxiety level is made even and accommodates for the higher stress level endured by DES daughters. I am not sure of the arrangement for DES Sons studies re mental health. I found this blog article very interesting and it is the first time I have seen something written about shame and guilt in DES daughters for “escaping the worst”. I guess this is on par with survival guilt sometimes experienced by trauma victims.
    Carol Devine, DES Exposure Australia

  2. Domino, thank you for talking about this difficult subject. Another great book on DES was written by the founder of DES Action USA, Pat Cody. It’s title is “DES Voices: From Anger to Action”. Pat included many individuals’ stories in the book, including those who experienced many of the emotions you describe above. It is so nice to know there are others out there experiencing the same range of emotions. I appreciate you sharing — you are not alone in this and neither are the millions of others exposed. We are all there for each other.
    DES Voices: From Anger to Action Kim

  3. My mother is a DES daugher. She has her mother’s medical records back in the 1950s to prove it. She is sufferring from menopause now and it seems to be worse than women who are not DES-exposed. Does anyone have any information about DES and menopause? Please help. Thank you

  4. I suffer with Depression,Anxiety and Panic disorder. I started menopause at 38 the doctors put the mental health issues down to Menopause.Menopause is not to blame it is the constant tests , procedures the constant medical roundabout because of DES.
    All I want is some one to stand up and say “We are sorry for misleading your mother”
    “We are sorry for what you are going through” . “We are sorry for what your children and grandchildren might go through” not just anyone, The drug companies the governments the doctors who handed this out. The old story “SORRY” seems to be the hardest word.Maybe then some of our anger might ease.

  5. My mother told me I was DES exposed when I was 15. I never blamed her, ever.
    We are very close and I love her so much.

    In my teens, I saw a doctor every 6 months for a pap smear/biopsies.
    In my twenties, I had 3 miscarriages & 2 ectopic pregnancies. I adopted a baby.
    In my thirties, I had numerous cervical/vaginal surgeries & mammogram troubles.
    In my forties, I had a complete hysterectomy and went into early menopause.
    Almost in my fifties, my grown adopted child left to search for the birth parents.

    Outside of DES, my life has been wonderful & filled with many blessings.
    It is a shame, however, that so many lives were touched by this terrible drug. The world needs to be told of the tragedies of DES. Many people, even in the medical communities, have never heard of Diethylstilbestrol.

  6. I also believe that the unprocessed guilt that a mom may feel regarding a certain child can skew entire family dynamics.

  7. I was told when I was 12 that I was a DES daughter and at the time they thought I might have cancer.. I had annual exams at a pediatric teaching children’s hospital (so not one but multiple group pelvic exams by residents) My mom felt so guilty about the DES problems that my dad took me to them.

    Later I was told erroneously that I probably would never be able to have children (neither my older sister or two cousins who were all DES exposed had any but our younger non exposed DES siblings all were able to) and i was in a spiritual community where family was really important so I never got married (in my 50’s now).. I have suffered from recurrent major depression that has crippled me at times. My mom has had Breast Cancer twice and I have fibroid s that recurred even after surgery to remove them (was told they never grow back).

    Thankfully the millions of women who never knew about their exposure probably had good lives but mine has been and continues to be very very lonely. People often ask me – why didn’t you have any kids? you seem like you would have been such a good mom..

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