Instead of the familiar envelope which used to come every five years no matter where I moved in the country, yesterday I got my email reminder. It’s time for the DES questionnaire folks. By folks I mean my female schoolmates whose mothers took pharmaceutical precautions to prevent miscarriages. DES should be a drug remembered by more people than those of us it affected. DES and it’s sinister friend thalidomide served as painful warnings to pregnant women to watch what medications they take.
About two million women and two million men in the U.S alone were exposed to DES in utero. The men appear to have some problems in their genitals but these never became as serious as the issues faced by the young, now older women who entered adolescence in the 1960’s, 1970’s and 1980’s. Some died of vaginal cancer in their youth, others of us had vaginal abnormalities and/or were infertile. I guess we can consider ourselves lucky to be alive.
My story starts with a loving mother who had a healthy baby boy in 1951 and no luck again until 1958 when I was conceived. She was prescribed DES to prevent miscarriages. No big deal until 1971 when news came out about the increased incidence of clear cell adenocarcinoma in teenage girls whose mothers had taken the drug. My mother knew she had taken DES but when she contacted her gynecologist she was told all the records had been destroyed. Perhaps that was the fashion in those days, but it was also the fashion that drug companies were making sure that any golden thread of responsibility could never lead back to them.
Sure enough when I went in to Mass General, a newly menstruating 12 year old, I was found to have polyps and growths, and mutated clear cells caused by the endocrine disrupter DES. I was followed for years at Mass General and never developed cancer. I will never know if I was infertile as I actually used the now out of fashion diaphragm for birth control for many years. Like most women, I sweated out the few times I had been less than careful in my precautions for sex but I never got pregnant. Maybe all that worry was for nothing in more ways than I thought. I also must disclose that since I have an anxiety disorder this may have influenced my practicing safe sex more than most people I knew as well as stressing out to the point where I probably couldn’t get pregnant. We’ll never really know though because I never tried.
Some of the more interesting DES experiences I’ve had include a gynecologist unfamiliar with my case exclaiming “Whoa! What’s going on in there?” Also I have been called back to clinics where someone who was not familiar with DES did not provide the appropriate screening. I have had cameras photographing you know where. I’ve had biopsies. I have had a crowd of people looking for my cervix. Mostly I remember not wanting to go into Boston for my checkup every 6 months as a teen. My mother would bribe me with ice cream or a visit to “The Tall Shop”. Interestingly enough DES was also being prescribed to bring on puberty in taller than average girls in order to close bone plates and avoid “excessive height.”
One of the painful life lessons learned from the DES fiasco is that sometimes we rush too quickly into solutions without assessing the risks. The food and drug administration approved DES for use in pregnancy in 1947 without the full clinical trial which when performed in 1953 proved it did nothing to prevent miscarriages. Still it was prescribed until the year that 8 of 9 girls with the rare clear cell cancer of the vagina were found to have a common exposure to DES. We learned that drug companies can be ruthless in protecting their corporate lives if somewhat lackadaisical about protecting ours. One young dying woman was subjected to the old “loose woman” accusations won her suit which was subject to a gag order. After her death it was published that she won her suit because the drug company left a court file with her name on it on an airplane seat. The airline sent it to her instead of the drug companies and the scales of justice were balanced. In 1980, Sindell vs. Abbott Laboratories established the use of market share liability in that a drug company could be held liable for their share of damage done by a drug that the plaintiff through no fault of her own could not identify the exact producer. The drug in question was DES.
So today I filled out my questionnaire. Over the 35 years I have been filling these out the questions have changed. They used to ask about pregnancies, sexual activity, abortions and cancer. Now they ask about menopause, hormone replacement and cancer. I’m proud to fill out my little survey which I’m sure will be used for batches of statistics for years to come. We can’t cure many diseases but we can learn from them. For more information check out