Medical Care for the DES Daughter
If you were born between 1938 and 1971 you may be a DES child. That means you were exposed to a medicine that was later banned by the FDA. This medicine was taken by pregnant people to prevent miscarriages. DES could impact the fetus. DES children are at higher risk of clear cell carcinoma of the vagina or cervix, some pregnancy problems, testicle cysts, or testicles that did not drop as they should.
It is a good idea to learn more about these risks and proper screening methods. Some doctors may not be aware of the extra medical attention DES children need.
A Brief History: The Problem With DES
Diethylstilbestrol (DES) was the first man made estrogen and was made in 1938. The drug was often prescribed to prevent miscarriages in the early stages of pregnancy. It was called a medical miracle.
In 1971 the New England Journal of Medicine reported that a rare form of cancer called clear cell adenocarcinoma of the vagina and cervix had been diagnosed in 4 young women. Before then it was mainly found in those at least 50 years of age. All of these women's mothers had taken DES while pregnant with them.
The FDA banned the drug. An estimated 5 million pregnant people had already been exposed to the harmful effects of DES.
It can be hard to know if you were exposed to DES when your mother was pregnant with you. 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 can ask your mother or check any of her medical records, that might help you find out.
The Physical Effects of DES
More research has found that about 1 in 1,000 DES daughters will have clear cell adenocarcinoma of the vagina or cervix. If caught early this rare 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 issue rarely becomes cancer, but should be watched.
Changes in the fallopian tubes, cervix, or vagina, have also been linked to DES exposure. These changes may lead to higher risks of ectopic pregnancies, premature births, and problems with having a child.
There is also a slightly higher risk of breast cancer after age 40.
Getting The Right Medical Care
People who were exposed to DES before they were born should talk with their doctor about any extra care or screenings that are needed. Some doctors do not know about the situation or think it is a problem of the past.
A special kind of pap test and other tests should be done each year to check for changes to cells in the vagina and cervix. Pregnant people who were exposed to DES should tell their doctors and know the signs for ectopic pregnancy.
As people who were exposed to DES enter menopause they should talk to their doctor about hormone replacement therapy (HRT). No studies have found that HRT is harmful for people who were exposed to DES. But not everyone needs HRT. It is best to talk to your doctor about your own risks and symptoms.
Those who had undescended testicles have a higher risk of testicle cancer. As people with DES age the risk for testicle cancer goes down.
Are There Risks to DES Grandchildren?Some health issues have been found in DES grandchildren. These include:
- Missing or skipped menstrual periods
- Problems with the immune system, heart, and pancreas
- A testicle does not move to the right place
- Penis does not form as it should
Parents who were exposed to DES should tell their child's doctor about the exposure.
- DES exposure: questions and answers. American Cancer Society website. Available at https://www.cancer.org/healthy/cancer-causes/medical-treatments/des-exposure.html.
- Diethylstilbestrol (DES) and cancer. The National Cancer Institute website. Available at: https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet.
- Disorders of sex development in infancy. EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/disorders-of-sex-development-in-infancy.
- Gaspari, L., Paris, F., et al. Diethylstilbestrol exposure during pregnancy with primary clear cell carcinoma of the cervix of an 8-year-old granddaughter: a multigenerational effect of endocrine disruptors? Human Reproduction, 2021; 36 (1): 82-86.
- Palmer, J.R., Hatch, E.E., 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.
- Zamora-León, P. Are the effects of DES over? A tragic lesson from the past. International Journal of Environmental Research and Public Health, 2021; 18 (9): 10309.
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