Health Issues of DES Daughters

Women exposed to DES (diethylstilbestrol) in the womb face a number of unique health issues. These can include birth defects of the reproductive system, cancer concerns, pregnancy complications, and infertility.

A study published in 1971 indicated that young girls and women exposed to DES in the womb were being diagnosed with clear cell adenocarcinoma (CCA). This cancer can affect both the vagina and cervix and its extensiveness dictates treatment. For early stage CCA, laser surgery or topical treatments may be effective. For extensive disease, a complete hysterectomy and/or vaginectomy may be required along with radiation and/or chemotherapy. It is very important that you have annual Pap smears and pelvic exams to attempt to screen for CCA.

The latest studies indicate that DES daughters have a higher risk of breast cancer as well. In addition, women who took DES also have a higher risk of breast cancer. Because early detection can be the key for successfully treating breast cancer, both DES daughters and DES users should do regular self exams as well as have regular exams by a medical professional. Beginning at age 40, mammograms should be done every one to two years. As DES daughters age, more information about the connection between breast cancer and DES may be apparent.

Women who have been exposed to DES may also have reproductive organ deformities. The vagina, cervix, uterus, fallopian tubes, and ovaries may be affected. These organs can be misshaped, missing, or incomplete. In some cases, the deformities may cause no health risks. In other cases, they can create reproductive health concerns and cause fertility issues. According to the CDC, abnormalities of either the uterus or fallopian tubes can be the leading cause of your increased risk for infertility. The CDC further states that these abnormalities can also lead to ectopic pregnancy, miscarriage, and pre-term delivery. Pre-eclampsia risks may be higher as well. Because of the increased risks, all pregnancies for DES daughters should be monitored by an obstetrician with experience handling high risk pregnancies.

DES daughters may enter menopause younger than their peers, however, their menopausal experience seems to be the same as for women who have not been exposed to DES. To date, no studies have been done regarding DES daughters and HRT because women are just now reaching the age when HRT would mostly likely be considered. Some suggest minimizing the dosage of any HRT as a precautionary measure, but each woman will have to work with her own provider regarding her own risks and benefits. Similarly, some physicians recommend that DES daughters avoid birth control pills containing estrogen.

Investigation is being done to determine if DES daughters have an increased risk for cervical intraepithelial neoplasia (CIN), or abnormal growth of cells on the surface of the cervix. Research is also being done to determine if there is a connection between auto-immune disorders and DES exposure. Additionally, some are conducting studies to determine if there are psychological issues that may be higher in women exposed to DES in the womb. There is also speculation that endometriosis, fibroids, and paraovarian cysts may be associated with DES exposure.

If you are a DES daughter, it is important that you notify all of members of your medical team. Since early detection can be the key for successful treatment, each may want to monitor specific health risks.

Browse through the HysterSisters GYN Genetics Articles  with information and resources for understanding your genetics risks for BRCA, Lynch Syndrome, DES daughters and more.

This content was written by staff of by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.  Reprinted with permission: DES Daughters

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