Diethylstilbestrol (DES) Update: Recommendations for the Identification and Management of DES-Exposed Individuals

Barbara Hammes, CNM, MS, Cynthia J. Laitman, PhD


J Midwifery Womens Health. 2003;48(1) 

In This Article

Contraception and Hormone Replacement Therapy for DES-Exposed Women

Each woman exposed to DES in utero should carefully consider and discuss the complexity of this issue with her health care provider. Although studies have not shown that the use of birth control pills or hormone replacement therapy are unsafe for DES daughters, these women should be cautioned that these medications contain estrogen and that there is a lack of research concerning its effects on DES daughters.

Structural changes in the vagina or cervix do not usually cause problems with the use of other forms of contraception, such as diaphragms or spermicides. Intrauterine devices are contraindicated in women with abnormal uterine shape. Cervical caps may be difficult to get an adequate seal because of altered cervical shape.

Preconception Care for Women Exposed to DES in Utero

Preconception care of women exposed to DES in utero should be referred to an obstetrician/gynecologist who has expertise in DES. Preconception counseling must include increased risks of infertility, ectopic pregnancy, miscarriage, premature labor, and premature birth. Diagnostic testing should include the following: pelvic examination to assess for vaginal/cervical anomalies; hysterosalpingogram to assess for upper genital tract anomalies (if history of prior poor pregnancy outcome or infertility); endometrial biopsy for the diagnosis of luteal phase defect (if history of prior poor pregnancy outcome or infertility); cytology and colposcopy; biopsy if abnormalities consistent with dysplasia are noted. Follow-up therapeutic procedures should be performed as indicated by diagnosis of dysplasia (adenosis itself needs no treatment). Finally, early diagnosis of pregnancy should be ascertained and followed with close monitoring for ectopic pregnancy.[60]

Obstetric Care of Women Exposed to DES in Utero

Women exposed to DES in utero should be referred to a maternal-fetal medicine specialist or clinician familiar with obstetric risks associated with DES exposure, for consultation, transfer of care, or collaborative management prenatally. As soon as pregnancy is diagnosed, serial serum human chorionic gonadotropin titers should be obtained every 48 to 72 hours until an intrauterine pregnancy is confirmed by vaginal ultrasound secondary to the increased risk of ectopic pregnancy in these individuals. Starting at 12 weeks, the cervix should be regularly inspected and palpated, looking for changes of cervical effacement and dilatation.[15] Michaels et al recommended ultrasound measurement of lower uterine cervical length at 14 weeks to establish the early diagnosis of cervical incompetence. Based on their observations, the diagnosis of cervical incompetency by vaginal-cervical examination is difficult due to anatomically short or hypoplastic cervices in these women. They found sonographic surveillance was especially useful in these cases to demonstrate very early changes of cervical incompetency.[40] Cervical cerclage as a prophylactic measure in DES-exposed women is controversial. Several studies have evaluated the efficacy of this and found that it did not prevent preterm delivery. In addition, significant risks to the mother were associated with its use.[61,62] It is recommended that the patient be examined every 2 weeks during the second trimester and every week during the third trimester.[9] These women and their partners should be educated about the symptoms of preterm labor but also assured that most DES-exposed women have normal, full-term pregnancies.

Hormone Replacement Therapy

Although hormone replacement therapy appears to be consistently related to an increased risk of breast cancer,[63] there is no evidence that this risk is further increased in women who took DES while they were pregnant. Because women who took DES during pregnancy have an elevated risk for breast cancer, and in the absence of more definitive research, prescribing hormone replacement therapy should be made with caution and on a per case basis.


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