CHANGES AND RISKS

Women exposed to DES before birth may have none or only some of the changes known to be linked to DES. Some exposed women may have no obvious signs of DES exposure, but may still be at increased risk for some DES-related problems. Other DES daughters may experience no health problems due to DES. Because health risks, including pregnancy problems and cancer, are not necessarily linked to obvious changes, all DES daughters need to follow certain screening procedures to protect their health. These include regular pelvic examinations and high risk care during pregnancy. Breast care designed in consultation with your doctor is also recommended.

Possible Problems

Adenosis
A typical cellular change in DES daughters is the presence of a type of tissue on the surface of the vagina that is not usually found there. Adenosis is a non-cancerous tissue that in most cases is replaced or covered by normal tissue over time. No treatment is necessary, but monitoring adenosis is important.

Adenosis may produce mucus, so that some women have a discharge which is often mistaken for vaginal infection. This condition does not need treatment, and usually lessens as the adenosis goes away. However, a heavy discharge can indicate the need for an examination.

The Shape of the Vagina, Cervix or Uterus
Many DES daughters have changes in the shape of their vagina, cervix, or uterus. In some, the cervix has a cervical "collar" or "hood". This is an extra ridge of tissue on the cervix. It is not harmful and often disappears over time.

A normal cervix, and one with a "hood" (right)

In some DES daughters, the inside of the uterus does not have the usual shape. Instead the uterus is shaped like a "T". It can only be seen with an X-ray called an hysterosalpingogram (HSG). An HSG is a special X-ray used to examine the uterus and the fallopian tubes. It is not routine for DES daughters, and it should not be done to determine whether you are DES-exposed.

Like many medical procedures, HSG carries a small risk of complications (such as infection), and should be done only when necessary. You should not have an HSG unless there is some problem that requires further investigation (it is usually part of a fertility examination).

Changes in the uterus are associated with pregnancy problems including ectopic (tubal) pregnancy and premature labor, and may be associated with miscarriage. Pregnancy problems can also occur in DES daughters even when anatomical changes are absent. There is no established treatment that is recommended to correct the T-shaped uterus.

The inside of a normal and a "T" shaped uterus (right

Changes in the Cells of the Cervix
DES daughters may be more likely than non-exposed women to have changes in the cells on their cervix. These changes can be detected by a Pap smear. If you have "an abnormal pap smear," it should be carefully evaluated by colposcopy (examination of the vagina and cervix using a magnifying device) when necessary, and by biopsy when indicated. For more about colposcopy and biopsy, see pages 26 and 27.

Local treatment may be necessary. This will help prevent invasive cancer of the cervix. Experts recommend that DES daughters get a second opinion from a doctor knowledgeable about caring for DES daughters whenever treatment is planned. For ways to find such a doctor, see page 28.

For further information on abnormal pap smears and cervical cancer, call 1(800) 4-CANCER and request the booklet entitled What You Need to Know About Cancer of the Cervix.

Experts recommend that DES daughters get a second opinion (advice from a second doctor knowledgeable about treating DES daughters) whenever surgery on the vagina, cervix, uterus or fallopian tubes is planned. For ways to go about finding such a doctor, click here.

Clear Cell Cancer
DES daughters have a risk of about 1 in 1,000 for a rare cancer of the vagina or cervix called clear cell adenocarcinoma. This cancer is extremely rare in women not exposed to DES.

Clear cell cancer occurs most frequently among DES daughters who are younger than age 30, but it also does occur in DES daughters older than 30. There is no known upper age limit for the development of clear cell cancer.

The recommended pelvic exam for DES daughters can help to detect clear cell cancer. The survival rate for clear cell cancer is high if it is detected and treated early.

Because DES-related cancer may not have any symptoms, all DES daughters need to have the pelvic exam recommended for DES daughters at least once a year for the rest of their lives, beginning at puberty.

DANGER SIGNALS

If you have any of the following symptoms, see your doctor right away. Here are danger signals:

Abnormal vaginal bleeding (unexpected bleeding between menstrual periods, or abnormally prolonged or heavy periods)
Vaginal bleeding or spotting after intercourse
Persistent vaginal discharge (can be light or heavy)
Vaginal pain

WHAT TO DO

If you have been diagnosed with clear cell cancer:

Get a second opinion about your diagnosis and treatment form a gynecologic oncologist who is experienced in treating this cancer. For ways to find such a doctor click here.
Learn all you can about clear cell cancer. Call the sources, and request the booklet entitled Clear Cell Cancer: A Resource Guide for DES-Exposed Daughters and Their Families.
Talk to others who have experienced clear cell cancer by calling the DES Cancer Network. The number is 1-800-DES-NET-4. People there can provide support and assistance.

Contraception
DES daughters should always tell their doctors about their DES exposure when discussing contraceptive options.

DES daughters who have abnormalities in the inside of their uterus should be cautious about choosing intrauterine devices (IUDs). Diaphragms and cervical caps may be more difficult to fit when anatomical abnormalities are present. Your doctor will help you choose the best contraceptive option for you.

Infertility
It is not known why DES daughters may have a slightly increased risk for infertility. Certain anatomic abnormalities in DES daughters may be responsible for this increased risk. Most studies show that the majority of DES daughters can become pregnant and deliver healthy babies.

Diagnosis and treatment of infertility in DES daughters is the same for non-exposed women. However, certain diagnostic procedures (tests to determine the cause of infertility) may be performed with extra caution due to some differences in the structure of the pelvic organs in some DES daughters.

Female reproductive system

Menopause
The oldest DES daughters were born in the late 1930s, and these women are just passing through menopause in the 1990s. There is no evidence at the present time to suggest that they will face unusual health problems in their middle and later years. However, research on DES daughter over 40 is just beginning. You can stay informed about new research by contacting the DES consumer organizations.

Breast Cancer
DES daughters are at a higher risk for pregnancy problems and possibly infertility. It is known that not having children or having a first child after the age of 30 increases a woman's risk of breast cancer. However, it is not currently known if exposure to DES before birth directly affects breast cancer risk. Each woman should discuss her individual risks with her doctor to develop a program for breast cancer screening and when considering the use of oral contraceptives and hormone replacement therapy.