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Medical Care for the DES Daughter

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A Brief History: The Problem With DES | The Physical Effects of DES | Receiving the Appropriate Medical Attention

If you were born between 1938 and 1971, you may be a "DES daughter," which means your mother may have taken this medicine to prevent miscarriages before it was banned by the FDA due to potential side effects. If you are a DES daughter, you are at increased risk of clear cell carcinoma of the vagina or cervix, as well as certain complications of pregnancy. It is a good idea to learn more about these risks and proper screening methods since some doctors may not be aware of the extra medical attention DES daughters need.

A Brief History: The Problem With DES

Diethylstilbestrol, the first synthetic estrogen, was first manufactured in 1938. The drug was routinely prescribed to prevent miscarriages in the early stages of pregnancy. It was heralded as a medical miracle, vigorously marketed, and promoted by many pharmaceutical companies.

All this positive press came to an end in 1971 because of research published in the New England Journal of Medicine. The journal reported that a very rare form of cancer called clear cell adenocarcinoma of the vagina and cervix, which until then was mainly found in women over age 50, had been discovered in four young women. All of these women had been exposed to DES prenatally.

Additional research studies confirmed this evidence, and the FDA banned the drug. However, an estimated five million pregnant women had already been exposed to the harmful effects of DES.

The Physical Effects of DES

Further medical research has found that approximately 1 in 1,000 DES daughters will develop clear cell adenocarcinoma of the vagina or cervix. If caught in its early stages, this rare form of cancer can be treated and is often curable. A more common aftereffect of DES exposure is benign precancerous cells around the vagina known as adenosis. This condition rarely progresses to cancer, but should be monitored.

Reproductive problems, such as anatomical changes in the fallopian tubes, cervix, or vagina, have also been attributed to DES exposure. These changes, in turn, may result increased risks for ectopic pregnancies, premature births, and possible infertility.

DES daughters may also have an increased risk of breast cancer after age 40.

Receiving the Appropriate Medical Attention

If you were born between 1938 and 1971, you may have been exposed to DES in utero. During that time, many pregnant women were told to take a "vitamin" that was, in fact, DES. Often the prescription for the drug was not noted on their medical records. If you are uncertain, ask your mother, and if possible, examine her medical records.

If you were exposed to DES in utero, talk with your doctor about the care you need. The National Cancer Institute DES Task Force has provided information about DES to the medical community. However, some doctors are still not knowledgeable about the situation or consider it a problem of the past.

All DES daughters need to be monitored at least annually with a special series of tests, known as the DES exam. This is to screen for signs of cancer and other problems. If you are a DES daughter and are pregnant, you will need to be monitored carefully, starting at conception. Be aware of the signs of ectopic pregnancy, which can be life threatening.

Researchers continue to investigate the effects of DES exposure. There is little known about what problems DES daughters might have as they approach menopause. There are, however, a number of resources where you can find information about the latest research.

Overall, DES daughters are somewhat less likely to have had full-term babies, and they may be less fertile. Many DES daughters, though, do have children. Researchers have now begun to ask whether these children have health problems related to DES exposure. There is no evidence yet that suggests that there are any serious risks for grandchildren. But research into the subject will continue.

RESOURCES:

DES Update Home

Centers for Disease Control and Prevention

http://www.cdc.gov/des/

CANADIAN RESOURCES:

D.E.S. Action Canada

http://www.descanada.ca

References:

Diethylstilbestrol (DES) and cancer. The National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Risk/DES. Accessed July 7, 2012.

Clear cell adenocarcinoma of vagina. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated May 25, 2012. Accessed July 7, 2012.

Diethylstilbestrol (DES) and cancer. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Risk/DES#r3. Accessed July 7, 2012.

Palmer JR, Hatch EE, Rosenberg CL, et al. Risk of breast cancer in women exposed to diethylstilbestrol in utero: preliminary results (United States). Cancer Causes Control. 2002;13:753-758.

Last reviewed July 2012 by Brian P. Randall, MD

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.