Diethylstilbestrol (DES) Exposure

What is DES?

Diethylstilbestrol (DES) was the first synthetic (manmade) estrogen. Estrogen is a type of hormone that is responsible for female sex characteristics. It was given to pregnant women from 1938-1971. It was thought to prevent miscarriages and help healthy pregnancies. Not only did the drug not work, but it also caused health issues for the women taking it, as well as children born of these pregnancies. These include both female and male children, though the cancer risks have only been proven in female children. Women who took DES have been found to have a greater risk of breast cancer.

What can I do if I took DES?

If you were given DES, you should:

• Have a mammogram and breast exam by a healthcare provider every year.
• Be familiar with your normal breast tissue.
• Tell your healthcare provider about any nipple discharge or changes in your breast tissue or skin (dimpling, swelling, redness, or nipple retraction).
• Tell your children if you were given DES during your pregnancy so they can tell their healthcare team.

What is the risk for daughters of women who took DES during pregnancy?

DES daughters, as they have become known, are at risk for a rare form of vaginal or cervical cancer called clear cell adenocarcinoma. The risk of this cancer in DES daughters is 40 times that of someone not exposed to DES. This risk is thought to be lifelong, so women exposed to DES while in utero (while in their mother's womb) should be sure they follow annual screening guidelines for "DES daughters."

Screening includes a yearly pap test with a pelvic exam. For this type of exam, your healthcare provider looks at your vulva, vagina, and cervix. Screening recommendations for the general public are starting to move to HPV testing alone and stopping Pap testing while screening. It is important to remember that this does not apply to DES daughters. The type of cervical cancer that happens after DES exposure is not caused by HPV, so a negative HPV test does not mean that you can skip an annual exam or not have a Pap test. Be sure your provider knows that you need a Pap test!

DES daughters also have about twice the risk of breast cancer than women who were not exposed to DES. You should talk about this increased risk with your healthcare providers and make a screening plan. This plan will likely include annual mammograms, along with an annual breast exam by your healthcare provider. It may be helpful to do monthly self-breast exams to become familiar with your breast tissue and tell your healthcare provider about any changes.

Other health concerns are infertility, miscarriage, and "T" shaped uterus (an abnormally shaped uterus). Researchers keep studying DES and its health risks. They are also looking at the risk for grandchildren of women who took DES.

Learn more about risks and research about DES exposure for women who took the medication, their daughters, sons, and grandchildren at the DES Action website.