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. These changes in the uterus are associated with pregnancy and premature labor, and may be associated with miscarriage.

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 and biopsy when indicated.

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, 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.

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.

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.

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.

CLEAR CELL CANCER FACTS: A SUMMARY

Risk in DES daughter:...................1 in 1,000
Number of cases recorded:........Approximately 600
Years of diagnosis:...................1969-present
Age range at diagnosis:.............7-42 years old
Most frequent age at diagnosis:....15-27 years old
Upper age limit at diagnosis:..............Unknown

From the Registry for Research on Hormonal Carcinogenesis, University of Chicago

WHAT TO DO


If you have been diagnosed with clear cell cancer:

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.

Female reproductive system

Pregnancy Problems

Most DES daughters have no problems with pregnancy. However, problems such as ectopic (tubal) pregnancy, premature labor, and possibly miscarriage occur more frequently in DES daughters, even among women who have already had children.

Fortunately, with the proper care, most DES daughters can have safe and successful pregnancies. Because DES daughters are at a higher risk for tubal (ectopic) pregnancy, you should be examined as soon as you think you are pregnant to determine whether the pregnancy is located in a tube or in the uterus. Pregnancy problems can occur even when there are no anatomic abnormalities.

Three possible sites of an ectopic pregnancy in DES daughters

Early evaluation by your doctor, including vaginal ultrasound and a pregnancy blood test, often allows for early detection of ectopic pregnancy. These simple steps could save your life and your fallopian tube.

Because your risk for premature birth is also increased, you need to know the signs and symptoms of this problem as well. You will also have to visit your doctor at frequent intervals throughout your pregnancy. Premature labor can sometimes be stopped if detected in time.

For more information on ectopic pregnancy and premature labor, request a booklet from one of the DES consumer organizations, or contact the National Institute of Child Health and Human Development at (301) 496-5133.

WHAT TO DO


If you are a DES daughter and you are pregnant:

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.

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