What is diethylstilbestrol?

Diethylstilbestrol, or DES, is a synthetic (man-made) form of estrogen. Estrogen is a female hormone. DES was given to millions of pregnant women between 1938 and 1971. It was discontinued in the United States in 1971. That is when researchers discovered that it increased some women’s chances of developing cancer. DES was used in other countries until at least the early 1980s.

Path to improved health

DES was given to pregnant women to prevent complications during pregnancy. These could include having a miscarriage or giving birth too early. Researchers found that the daughters of the women who used DES were 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. They also raise the risk of 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 healthy babies.

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

How do I know if I was exposed to DES?

If you were pregnant between 1938 and 1971 try to remember if you may have taken a prescription medicine during your pregnancy. If you did, 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.

Things to consider

I took DES during pregnancy. What should I do?

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

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

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 may also include a colposcopy. This 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.

Questions to ask your doctor

  • I took DES when I was pregnant. What is my risk of developing cancer?
  • I was exposed to DES before I was born. What is my risk of developing cancer?
  • How common are these types of cancer?
  • What other reproductive problems might I have because of my exposure to DES?
  • Will it be harder for me to get pregnant?

Resources

) and Cancer

 by S Schrager, MD, and BE Potter, MD (American Family Physician, May 15, 2004)