Medical Care for the DES Daughter
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
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 a misshapen uterus or anatomical changes in the fallopian tubes, cervix, or vagina, appear in 20%-50% of the DES population. These changes, in turn, result in seriously increased risks for
Studies from Boston University suggest that DES daughters may also have an increased risk of
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 an 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.
Are There Risks to DES Grandchildren?
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.
DES Update Home
Centers for Disease Control and Prevention
D.E.S. Action Canada
Women's Health Matters
Abramson Cancer Center of the University of Pennsylvania website. Available at: http://www.penncancer.org/.
DES: questions and answers. The National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Risk/DES. Updated November 2006. Assessed July 18, 2008.
Palmer JR, Hatch EE, Rosenberg CL, et al. Risk of breast cancer in women exposed to diethylstilbestrol in utero: prelimiinary results (United States). Cancer Causes Control. 2002;13:753-758.
Last reviewed June 2010 by
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.
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