DES Daughters: A Medication My Mother Took Before I Was Born Will Affect Me for Life

What you should know about this drug that was given to millions of pregnant women over several decades

Bobbi Dempsey,

AARP

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En español

Published October 09, 2024

Photo Collage: AARP (Source: Getty Images)

A prescription medication has impacted me in several life-changing (and potentially life-threatening) ways — even though I wasn’t the one who took it. It was a drug prescribed to my mother before I was born.

Years ago, after we saw a news story about the continued ripple effects of diethylstilbestrol, a synthetic estrogen, my now-deceased mother recalled taking it while she was pregnant with me and possibly at least one of my siblings.

After doing some research, I realized this pre-birth exposure to the drug — which doctors stopped prescribing to pregnant women years ago — is likely to blame for many of my major health issues and medical conditions.

Health risks for DES daughters

Women exposed to DES in utero are at increased risk of several specific cancers, including:

Clear cell adenocarcinoma
Breast cancer
Pancreatic cancer
Cervical precancers

They may also have other health issues, including:

Autoimmune conditions
Cardiovascular disease
Pancreatic disorders
Early menopause
Depression

Source: National Cancer Institute

I was born with reproductive tract abnormalities, including uterus didelphys (a double uterus), which caused me to have excruciatingly painful periods with bleeding so heavy I would become anemic and frequently pass out.

I had multiple miscarriages, an ectopic pregnancy and endometriosis. I also had three high-risk pregnancies that reached full term, during which I experienced preeclampsia (a high blood pressure disorder) and other serious complications. All three of my deliveries were breech births, which is common with pregnancies among women with a double uterus.

The women born to mothers who were given diethylstilbestrol (known as DES) while pregnant are called DES daughters. All of the issues I experienced are commonly seen in DES daughters — like me.

What is diethylstilbestrol?

DES was mainly intended to prevent preterm labor, miscarriage and other pregnancy complications, although it was also used to treat a variety of other conditions including vaginitis and menopause symptoms. It was first introduced in the U.S. commercial market around 1940, but by the 1960s there was increasing evidence linking the drug to cancer in the daughters of women who took DES while pregnant.

“Clinical studies in the early to mid-1950s showed that it was not effective at reducing poor pregnancy outcomes, and in the mid-1960s an association [to cancer] was found in the offspring of mothers exposed to DES,” says David Downing, M.D., an ob-gyn at Weill Cornell Medicine. “Their female children had a much higher incidence of vaginal clear cell adenocarcinoma, a very rare vaginal cancer.”

The Food and Drug Administration (FDA) issued an alert warning doctors about the dangers of the drug to pregnant women in 1971 and its use declined after that, although there are reports of DES still being given to pregnant women in the U.S. and Europe until at least the late 1970s.

The Centers for Disease Control and Prevention (CDC) estimates that anywhere from 5 to 10 million people in the U.S. were exposed to DES — which came in various forms, from pills, to creams, to vaginal suppositories — between 1938 and 1971. This number includes women who were prescribed DES while pregnant and the children born of these pregnancies.

Downing says no form of DES is currently prescribed in obstetrics. However, on rare occasions, it is used as a treatment for prostate cancers.

A calling inspired by DES exposure

My history of pregnancy challenges, complicated deliveries and other medical issues is very familiar to Suzanne “Su” Robotti, who has met many women with stories like mine.

Robotti is also a DES daughter and believes exposure to the drug in utero is to blame for infertility challenges she experienced as an adult. Her own experience with the effects of prescriptions drugs prompted her to start the MedShadow Foundation — a nonprofit health news journalism site dedicated to investigating and reporting about medication risks and side effects — in 2012. Two years later, MedShadow acquired DES Action USA, a nonprofit advocacy organization that provides information and resources to those affected by DES.

On top of dealing with serious and often frightening health issues and cancer risks, Robotti says women impacted by DES exposure often encounter health care providers who aren’t familiar with the drug or who downplay the women’s concerns. Since DES daughters are now at least in their early 50s, many of their symptoms or health issues are also often chalked up to menopause or premenopause — something I’ve experienced firsthand.

Could you be a DES daughter?

Many women could be DES daughters and not even know it. (Unfortunately, there is no medical test — like a blood test or urine analysis — that can detect DES exposure, the CDC says.)

Even if they suspect their mother took the medication while pregnant, proving that can be very challenging, if not impossible.

After realizing I was exposed to DES, I went through a process common among DES daughters. I embarked on a frustrating — and in the end futile — quest to get any sort of medical information or documentation. Not surprisingly, my mother’s records had been destroyed long ago. The doctors who treated her were no longer practicing and were likely deceased. Several clinics and at least one of the hospitals where she was treated had been closed for years.

But aside from my mother’s recollection of taking DES, my own anatomy and medical history is convincing evidence that points to my DES exposure, according to several of the doctors I’ve consulted over the years.

For others who want to try and research their own possible DES exposure, DES Action has some tips on looking for medical records.

What to do if you may be a DES daughter

If you were exposed to DES in utero — or believe there’s a chance your mother may have taken this medication while pregnant — it’s important to alert your health care providers, especially your ob-gyn. At this point, most DES daughters are past childbearing age, so pregnancy and birth complications aren’t as much of a concern, but the increased cancer risk means you need to be extra vigilant about routine screenings.

Downing says it’s recommended that women exposed to DES in utero get screened every year for cervical and vaginal cancer. “Otherwise, all other screening recommendations are the same. If there are infertility issues present, screening for uterine congenital abnormalities is indicated,” he says.

In my case, even though I’ve had a hysterectomy, I will still undergo a specific type of Pap smear every year for the rest of my life, as per the standard recommendations for DES daughters. Since DES daughters also have a higher risk of breast cancer, I am conscientious about getting mammograms every year as well.

Resources for DES daughters

The most helpful source for information about DES that I’ve found is DES Action, which has a wide collection of resources, including “A Gynecologist’s Guide to Treating DES-Exposed Women.” You can print the guide and take it with you to your ob-gyn visit; this can be very helpful if your doctor doesn’t have a lot of experience with DES-exposed patients.

Other helpful resources include:

Diethylstilbestrol (DES) Exposure and Cancer — National Cancer Institute
DES Exposure: Questions and Answers — American Cancer Society

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Bobbi Dempsey is a freelance writer who has written about a variety of topics, including health and entertainment, for aarp.org and AARP The Magazine. Her work has also appeared in Parade, The New York Times, Harper’s and other outlets.

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