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What is diethylstilbestrol?

Diethylstilbestrol (say: “die-eth-el-still-bess-troll”), or DES, is a man-made form of estrogen. Between 1938 and 1971, millions of women in the United States were given DES to prevent them from having a miscarriage or giving birth too early. DES was used in other countries until at least the early 1980s.

In 1971, researchers found that women who were exposed to DES before they were born are more likely to get a certain kind of cancer of the vagina and cervix (called clear cell adenocarcinoma, or CCA). These women are sometimes called “DES daughters.”

Has DES caused any other problems?

Yes. Women who took DES during pregnancy have about a 30% higher risk of getting breast cancer. Daughters of women who took DES during pregnancy also may have a higher risk of breast cancer.

Up to one-third of DES daughters have reproductive tract problems. These problems increase their risk of not being able to get pregnant, having a miscarriage or having a baby too early. Even with the increased risk, however, most of these women have no problem getting pregnant and delivering their babies.

The sons of women who took DES during pregnancy (sometimes called “DES sons”) have a higher risk of some reproductive tract problems, such as abnormally small or undescended testicles. However, they seem to have normal fertility.

How do I know if I was exposed to DES?

If you were pregnant between 1938 and 1971 and think that you may have taken a prescription medicine during your pregnancy, try to get your medical records from the doctors who took care of you. Remember, DES was used in other countries until the early 1980s.

If you were born between 1938 and 1971, ask your mother if she remembers taking any prescription medicine during her pregnancy.

I took DES during pregnancy. What should I do?

Be sure to tell your children that you took DES during your pregnancy and encourage them to tell their doctors.

Although the increase in your risk of getting breast cancer is small, you should also tell your doctor that you took DES during pregnancy. Your doctor will discuss this risk factor with you. He or she will most likely recommend regular breast screenings and medical exams.

I am a DES daughter. What special health care needs do I have?

Be sure to tell your family doctor that you were exposed to DES.

If you have never had a pelvic exam, your doctor will want you to have one. Your doctor will check your vagina, uterus, cervix and ovaries for lumps. Your exam should also include a colposcopy (say: “call-poss-kah-pee”). A colposcopy is an exam in which your doctor uses an instrument (called a colposcope) to magnify the view of the tissues in your vagina and cervix.

It is important to have pelvic exams and Pap smears every year. You might have a little trouble getting pregnant, but most DES daughters are usually able to get pregnant and have healthy babies.

I am a DES daughter and I’m pregnant. Is there any risk to my baby?

There is a slightly greater risk of infertility and miscarriage in women exposed to DES. However, most DES daughters have healthy babies. Talk with your doctor about your concerns.

I am a DES son. What special health care needs do I have?

Tell your family doctor that you were exposed to DES. Have regular prostate exams and do regular self-exams of your testicles. You also should report any urinary or genital problems to your doctor.

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