DES Mothers

Navigating the Complex Terrain of Prenatal Exposure - Breast Cancer Risks, Difficult Conversations, and the Emotional Toll

Women Prescribed DES While Pregnant

Between 1938 and 1971 (especially in the 1950s and early 1960s), Diethylstilbestrol, or DES, was a medication commonly prescribed to prevent miscarriage. It was frequently given to women who had a medical history of previous miscarriage, diabetes, bleeding during pregnancy, threatened miscarriage, or premature labor.

DES was primarily prescribed in pill form but was also given by injection until the mid to late 1950s. However, the frequency of DES shots decreased over time. DES could also be administered via vaginal suppositories (sometimes called pessaries).

Complicating things, DES was also included in the formulations of some prenatal vitamins, meaning individuals were exposed without actually having had DES specifically prescribed.

Unfortunately, many women trying to confirm exposure have found that medical records from the mid-twentieth century are often impossible to obtain. This lack of medical information leaves patients reliant on individual family histories to determine the source of adverse reproductive health issues in their children and grandchildren.


Health Effects for DES Mothers 

  • Breast Cancer

The risk of developing breast cancer is approximately 30% higher in DES Mothers than unexposed women. This added risk should be taken into account when making medical decisions, such as starting or continuing hormone replacement therapy. If hormone replacement therapy is absolutely necessary, then only short-term use with the lowest dosage should be considered. This recommendation applies to all women, but especially those exposed to DES. Additional recommendations for DES Mothers include annual breast screenings, including clinical breast exams done by your healthcare provider.


  • Tell Your Children 

Women who were given DES are urged to tell their children. DES is an important part of their children’s health history, and they should be aware of it in order to make informed decisions and obtain the necessary health screenings. This difficult conversation should be held even if these children (now adults) have no health problems. Research on DES Daughters, DES Sons, and now DES Grandchildren is ongoing and may reveal previously unknown health effects. If the offspring are not told of their potential risk, they cannot stay informed to protect their health.


  • Emotional Impacts 

DES creates emotional trauma for all parties involved: DES Mothers (and Fathers), DES Daughters, DES Sons, and DES Grandchildren.

For DES Mothers, there is often a feeling of guilt even though they were following their doctor’s orders in hopes of having healthy children. They took their medication in good faith without any knowledge of future adverse effects. DES Mothers are victims, just as their children. Many DES Mothers understand this intellectually, but often find it hard to reconcile emotionally. It is tough shaking feelings of guilt, even though DES Mothers did nothing wrong. Also, they may find themselves anxious about medical problems for their children. Every new health issue linked to exposure can give rise to unfair self-blame and concern. Experience shows that keeping lines of communication open is helpful. Staying current on the latest DES findings and health screening recommendations can open discussions with family members.

Taking action can reduce feelings of helplessness and pain. That includes being vigilant in urging children to get proper medical care. Additionally, joining DES Action can be another step toward healing. DES Action members get new information throughout the year and help others by supporting an organization actively pushing for continued DES research.