FOR DES MOTHERS

Your children need to know that you took DES. DES exposure is a vital part of your son's or daughter's health history. DES exposure is also an important part of your own health history. If you took DES you may have a slightly increased risk for breast cancer, so pay particular attention to your breast care.

Why Tell Your Children

Knowing about DES can help you adult children take steps to protect their health, even if they have no health problems. Telling your son or daughter about DES is part of taking care of you adult child.

DES exposure can be a sensitive topic among family members. But talking about DES can help you resolve feelings that you may have hurt your adult children.

A typical DES prescription from 1951

Some mothers think that it will worry their daughter or son to learn about DES. They can reduce this worry by presenting the facts calmly, and providing information about the help that is available. If DES exposure is kept secret, DES daughters and sons may not get the important health care they need.

Complete information will help your adult child make the right health care decisions and receive proper care.

IF you feel that you cannot bring up the subject of DES with you adult child, make sure he or she gets a booklet about DES which includes the recommended health care. For a list of places to call to request booklets about DES, see pages 13 and 14.

Following is a suggestion for what to say to help your children understand why you took DES:

"When I was pregnant with you, the doctor gave me a drug called DES to help my pregnancy. When I took it we thought it was helpful. But now some health problems have been linked to DES exposure in some of the women who took it, and to some of their children."

Talking with Your Daughter(s)

Here is some information about DES to give your DES-exposed daughter when you talk
with her about it:

A rare cancer of the vagina or cervix, called clear cell adenocarcinoma, is linked to DES exposure. Your risks for developing it are about 1 in 1,000. Clear cell cancer occurs most frequently among DES daughters younger than age 30, but it can also be found in DES daughters older than 30. There is no known upper age limit for developing this cancer. Because it has no early warning signs, you need a careful pelvic exam at least once a year. This exam is somewhat different from the routine exam for other women.
Most DES daughters have no problems with pregnancy. However, pregnancy problems (ectopic pregnancy, premature labor, and possibly miscarriage) occur more frequently in DES daughters. They may also have a slightly increased risk for infertility.
Fortunately, with the proper care, most DES daughters can have safe and successful pregnancies. But during pregnancy, they need special care. Even DES daughters who have already had a successful pregnancy need special care in future pregnancies.
For more information, contact one of the resources on page 13 and request other booklets in this series.

Talking with Your Son(s)

Here is some information about DES to give your DES-exposed son when you talk
with him about it:

DES sons are at increased risk for non-cancerous cysts on the back of the testicles (on the epididymis), and for underdeveloped testicles.
Like all men, he should examine his testicles regularly to check for any lumps. If a lump is found, he should see a doctor.
Some research has also shown there may be a link between high doses of DES and problems with fertility.
DES-exposed sons should see a doctor if they are concerned about their fertility.
There has been little research on the effects of DES exposure on DES sons, but new studies are in progress. The best way for you to protect your health is to stay informed about new research findings.
For more information on DES, contact one of the resources, and request other booklets in this series.