11/10/2025
DES Info: A DES Daughter shared her journey, heartache, and pain..
I write this as a 70+year-old. When my mother was pregnant with me, she was prescribed the drug DES; diethylstilbestrol, to prevent miscarriage. My mother’s first pregnancy was uneventful. She subsequently had 2 miscarriages before she became pregnant with me.
DES is a synthetic estrogen. It was never properly tested. Pregnant women were given it without their consent at the Lying-In hospital in Boston by Dr. George Smith.
It was known in the 1940’s that DES caused cancer in mice. In 1947, despite this knowledge, DES began to be used in pregnant women. Dr. Smith thought miscarriage and preterm delivery were caused by a drop in estrogen. So, he thought giving women estrogen while pregnant was the solution. He declared that DES would “make a normal pregnancy more normal”.
On April 21, 1971, the Boston Globe reported that DES was the cause of a rare cancer, clear cell adenocarcinoma of the va**na, in 7 young women being treated for this disease at Massachusetts General Hospital. In 1971, I was 18 years old.
Upon learning what had happened, my mother arranged for me to see her gynecologist. It was my first visit to one. I asked if being DES exposed might affect my ability to have children. I was told if menstrual fluid could get out, s***m could get in.
I was, however, at increased risk of developing this rare cancer, which was treated with radical hysterectomy, and vaginectomy. Here began the countless gynecological visits I would have to have, including special procedures to evaluate the benign hallmarks of DES that lined my va**na and covered my cervix.
In 1975, I married. On November 11, 1976, I underwent emergency surgery for an about to rupture ectopic pregnancy. It was in my left Fallopian tube. As was the standard of care at that time, the tube was removed. It was a complete shock to learn that I was pregnant. I had had an odd period some weeks before that my doctor thought was relayed to ovulation. Back in the day, pregnancy tests were not run in those instances. I had just turned 23.
Our efforts to conceive again were met with failure. In desperation, I looked in the Yellow Pages, the “search engine” of the time, and made an appointment with a fertility specialist. G-d led me to the right person. He had recently read about a study done on DES daughters experiencing pregnancy loss. The study was done at Baylor University in Texas by Dr. Raymond Kaufman. He had done dye enhanced x-rays of the uterus in more than 70 women. All of them had uterine and/or fallopian tube abnormalities.
Not long after, I had this test. My uterus was deformed. The cavity was nearly nonexistent; what was there had the shape of the letter “Y”. I was advised that it was most likely impossible for me to have a successful pregnancy, to get some “help” to deal with it and decide what we as a couple wanted to do in terms of building a family. The doctor would also fully evaluate my fertility and help me try to conceive if I chose to do that. I was still 23 years old.
In 1978 I became pregnant again. I still have the temperature charts from those times. This was a twin pregnancy. I was told the likelihood was that I would not go full term, and to prepare for that. Shortly thereafter, the beta subunit test I was having weekly to track the pregnancy revealed that I was miscarrying. The year was 1978; I was 25.
My husband and I were also trying to adopt a baby at that time. The situation seemed so bleak, and I was a realist then, as I am now. Yes, we wanted to keep trying, but what we really needed was to have a family.
Adoption was very hard to do in those days. There were only a couple of listings in the Boston Yellow Pages. We learned that in Massachusetts, where we live, we could do an “Identified” adoption; that is, find a woman who is pregnant and wants to have her child adopted, and work with a lawyer. We found a young woman through a local Rabbi. We are Jewish. We called my father’s lawyer. The baby was born. It was a boy. We had 12 filled bottles in the refrigerator. I remember the dress I was wearing as we got ready to pick up our son. The phone rang. It was our lawyer. He had no idea we needed to work with a licensed adoption agency in the state. What we were doing was illegal. Instead of picking up our baby, we emptied the formula into the sink. While not a pregnancy loss, it was an enormous sadness.
I was plagued by depression in those days. Who wouldn’t be? At 23 we are barely beginning to live life as adults. We had been dealt an incredibly tough hand. I left my job. I became an activist in the DES movement, something I still do to this day. A friend and I run the page DES Info. We do not want to be forgotten.
In 1979, we identified another pregnant woman. She was 18. I was fully knowledgeable of the law at this point. On December 9, 1979, a baby boy was born. The biological father was in a motorcycle accident right after the birth, so the baby was placed in foster care, as he was unable to sign the paperwork. I lived in fear that something awful would happen. I could not imagine another loss of another baby. Of two adoptions not working out. Finally, 7 weeks later, we brought our son home. It was January 28th, 1980.
With a newborn at home, we weren’t trying to have a baby. Given my history of inability to conceive, we didn’t bother with birth control. I had a very hard time getting pregnant the second time. I found out I was pregnant again when our baby was only a few months old. By this time, I was working for an infertility specialist, a career that found me. I began experiencing pain and bleeding, as I had with my first ectopic pregnancy. I was hospitalized for observation. My boss was my doctor at that time. One of the top specialists in the city, I wanted to make sure, with only one fallopian tube left, that I had the best surgeon in case I ever needed one again. It was too soon to know if the pregnancy was in my deformed uterus, or my questionable Fallopian tube. On the evening of May 7,1980, having the same pain as I had with my first ectopic, I asked the doctor to do a laparoscopy. He agreed that it made sense at that point. My only thought was that my baby needed me. He was not yet legally ours according to the laws in the state. If I died, my husband would lose his wife, and his child. I requested that if my tube was the location of the pregnancy, to leave it closed. I had a deformed uterus that likely would not work anyway. I am a realist.
In the wee hours of May 8, my surgery began. The pregnancy was in my other Fallopian tube. The bleeding would not stop, and the bipolar cautery needed to stop it could not be located. My remaining Fallopian tube was removed.
Despite my request to have my tube sealed, I was shocked and devastated to learn that I would never become pregnant again. I was 26.
Tragedies change us permanently. We do go on, but I dare say we are different people than we would have been. My joy was found in raising our son. We have grandchildren now, and I love them more than anything in this world.
At the same time, I have never forgotten my losses, and how it felt going through them. I mourn to this day the loss of my ability to experience pregnancy. As a DES daughter who has been so active in this cause, I have known too many other exposed women who have had so many losses. Some because the cancer robbed them of their reproductive organs; so many who have had ectopic pregnancies; many more whose premature babies have suffered to this day with devastating problems related to being born too soon; and others whose babies did not survive.
We must never let the world forget – The DES Tragedy!
DESInfo411@gmail.com
