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Health Care Providers Home > Information to Identify and Manage DES Patients > Patients Who Are DES Daughters > Identification of DES Daughters
Patients Who Are DES Daughters

Patients Who Are DES Daughters

 Overview
 Identification of DES Daughters
 Health Risks and Related Concerns for DES Daughters
 Counseling DES Daughters
 DES References: Research on DES Daughters
Identification of DES Daughters

Most persons exposed to DES have not experienced negative health consequences. However, it has been clearly demonstrated that women exposed to DES in utero (DES Daughters) have an increased risk of reproductive tract structural differences, pregnancy complications, infertility, and clear cell adenocarcinoma (CCA) of the vagina and cervix. Although the majority of cases of CCA in DES Daughters occur before the age of 35, cases have been documented in women in their 40s (179). Therefore, it is essential to identify and continue to screen all DES Daughters for CCA. Studies of midlife and later health effects on persons exposed to DES in utero have not yet been completed. Therefore, it is possible that identifying DES Daughters now may allow for interventions if additional health risks are identified as DES Daughters age.

In the United States, DES was prescribed primarily to prevent spontaneous abortion and premature delivery between 1938 and 1971 (12). Never patented, it was prescribed under more than 200 different brand names under a variety of dosage regiments, including in combination with vitamins (290). DES was shown to lack efficacy for prevention of pregnancy complications in 1953 (291). However, it was still widely prescribed until it was demonstrated, in the early 1970s, that women exposed to DES in utero (DES Daughters) developed clear cell adenocarcinoma (CCA) of the vagina and cervix at a rate significantly higher than the general population (132,157).

Although public education campaigns were undertaken, not all DES Daughters know about their exposure. DES was been prescribed to pregnant women outside the United States after 1971, and is still available in oral form for human use in some countries today (294). For more information on the drug DES, including details of current usage, refer to DES: Pharmacology.

Some women may be aware that their mother was prescribed DES while pregnant. Others may report their mother had a history of recurrent miscarriage and/or took medication to prevent miscarriage or preterm labor between the years of 1938 and 1971. The youngest women exposed to DES in utero are now in their 30s. The oldest are over 60 years of age. Most have no health problems linked to DES. Others may exhibit reproductive tract abnormalities, including vaginal adenosis (Figure 8), a cervical cockscomb (Figure 5) and vaginal ridges (39,42,46,47,49,50,52,77,80,87,98,105,106,183). Of these, vaginal adenosis and a T-shaped uterus (Figure 7), are most highly associated with in utero DES exposure. Clear cell adenocarcinoma (CCA) of the vagina and cervix (Figure 2), is a very rare cancer that occurs more commonly and at younger ages in women exposed to DES (132). Patients who present with CCA, particularly before the age of 40, may have been exposed to DES in utero.

DES Daughters should be encouraged to discuss the issue with their mothers, and, when possible, obtain their mother's obstetrical records. This is of particular importance since the health risks to women exposed to DES in utero are still partially unknown. Many women who were prescribed DES while pregnant are elderly. If their children and grandchildren are not informed of their potential risk, opportunities for future intervention may be lost.

For a complete list of the numbered citations on this page see DES References.

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