If you were born between 1938 and 1971, you may be a DES daughter, which means your mother may have taken this medication 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 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 4 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 5 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 in 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
Between 1938 and 1971 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.
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.
Centers for Disease Control and Prevention
D.E.S. Action Canada
Women's Health Matters
Diethylstilbestrol (DES) and cancer. The National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Risk/DES. Updated October 5, 2011. Accessed March 23, 2016.
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.
Selected item from the FDA drug bulletin-november 1971: diethylstilbestrol contraindicated in pregnancy. Calif Med. 1972;116(2):85-863.
Last reviewed March 2016 by Michael Woods, MD Last Updated: 5/6/2014