What is Diethylstilbestrol (DES)?
Diethylstilbestrol (DES) is a synthetic form of the hormone estrogen that was widely prescribed to pregnant women from 1940 to 1971, with peak usage in the 1950s. It was intended to prevent complications such as miscarriage and premature birth, but was later found to be ineffective and harmful. In 1971, after studies linked prenatal DES exposure to a rare vaginal cancer in female offspring, the U.S. Food and Drug Administration (FDA) advised doctors to stop prescribing it to pregnant women.
The identification challenge
Identifying prenatal DES exposure is difficult, as many women and their mothers are unaware it occurred. There is no blood, urine, or other simple medical test to confirm DES exposure directly. The process relies on a combination of investigating maternal history and recognizing specific health patterns common among DES-exposed individuals.
Step 1: Check Your Maternal and Birth History
Since a lab test isn't an option, the first step is to gather information about your mother's pregnancy and your birth. This can be a challenging process, as it involves records from decades ago.
- Speak with your mother or family members: If possible, ask your mother if she took any medication during her pregnancy between 1940 and 1971. Some women may remember experiencing difficult pregnancies or being told they were at risk for miscarriage, and may recall taking a small, clear or colored pill. Keep in mind that some women may not have been aware they were taking DES, as it was sometimes included in multivitamin prescriptions.
- Attempt to obtain medical records: Try to contact the hospital where you were born to request a review of your mother's records. Although many doctors' and hospitals' records from that era have been destroyed, some may still exist. The county medical society or health department may be able to help locate records. If you know where the prescription was filled, you could also contact the pharmacy. Military medical records are kept for 25 years.
- Look for DES product names: If you find any prescription records, be aware that DES was sold under numerous brand names. These included Stilbestrol, Stilphostrol, Diestryl, and TACE, among others. A comprehensive list can be found through DES Action.
Step 2: Recognize Potential Health Patterns and Clinical Findings
Even without documentation, your specific health history and anatomical features may provide compelling evidence of DES exposure. A knowledgeable gynecologist can look for certain signs during a pelvic exam.
Reproductive tract abnormalities
DES exposure in utero can lead to structural changes in the reproductive organs, including the cervix, uterus, and fallopian tubes. These changes can be markers for exposure.
- T-shaped uterus: A specific malformation where the uterine cavity is narrower and appears T-shaped on a hysterosalpingogram (HSG).
- Cervical collar or hood: An unusual ridge or hood-like formation on the cervix.
- Vaginal adenosis: A condition where glandular tissue, typically found in the cervix, appears in the vagina. While benign, it is a key indicator of DES exposure.
- Anomalies of the fallopian tubes: Such as shorter, distorted, or coiled tubes.
Reproductive and pregnancy issues
DES daughters have higher rates of certain reproductive problems compared to unexposed women.
- Increased infertility: Studies have found a higher rate of infertility, particularly due to uterine or tubal issues.
- Pregnancy complications: Higher rates of premature births, ectopic pregnancies, and miscarriages are reported.
- Early menopause: Some research indicates an increased risk of early menopause (before age 45).
Cancer and precancerous conditions
While the absolute risk of cancer for DES daughters is still relatively low, it is significantly higher than in the unexposed population.
- Clear cell adenocarcinoma (CCA): An extremely rare cancer of the vagina or cervix. DES daughters have a 40-fold increased risk, though the cumulative incidence is still low, around 1 in 1,000.
- Cervical precancers: DES daughters are about two times more likely to have high-grade cell changes in the cervix and vagina, which can develop into cancer if untreated.
- Breast cancer: A potential increased risk of breast cancer after age 40 exists for DES daughters.
Other health conditions
Beyond reproductive health, research points to other potential effects of prenatal DES exposure.
- Pancreatic disorders and cancer: A study found a two-fold increased risk of pancreatic cancer and a higher risk of pancreatic disorders.
- Cardiovascular issues: Higher risks of high cholesterol, hypertension, and heart disease have been observed.
- Endometriosis and fibroids: Some evidence suggests a higher incidence of uterine fibroids and endometriosis.
Navigating Health Screening and Medical Care
If you suspect you are a DES daughter, proactive medical care is vital. It's important to inform your healthcare providers of your potential exposure so they can tailor your screening and treatment plan. Your doctor may recommend a specialized pelvic examination to thoroughly screen for abnormalities.
Comparing screening for DES daughters versus unexposed women
| Aspect of Care | DES Daughters | Unexposed Women |
|---|---|---|
| Pelvic Exam | Annual exam with careful visual inspection and palpation of the entire vagina and cervix is recommended, especially by a knowledgeable gynecologist. | Routine pelvic exams are typically based on risk factors and age. |
| Pap Test | Annual Pap tests should include samples from both the cervix and the upper vagina (four-quadrant Pap test) to screen for abnormal cells. | Standard cervical Pap tests are performed according to age and risk guidelines. |
| Colposcopy | Often used if Pap tests show abnormalities or to closely examine the cervix and vagina. | Performed to investigate abnormal Pap test results. |
| Breast Cancer Screening | Regular screening is essential due to potentially increased risk after age 40, including annual clinical exams and mammograms. | Follows standard age-based recommendations for the general population. |
| Pregnancy Monitoring | Any pregnancy is considered high-risk and requires careful monitoring due to increased risk of complications like ectopic pregnancy and premature birth. | Standard prenatal care is provided, with high-risk monitoring reserved for specific indications. |
The Third Generation: DES Grandchildren
Research into the health effects of DES exposure has extended to the children of DES daughters and sons, known as the third generation. Some studies suggest potential issues, though findings are often based on smaller cohorts and require further research.
- DES Granddaughters: Some research has suggested they may have later onset of menstruation, menstrual irregularities, and potentially an increased risk of infertility and preterm birth.
- DES Grandsons: Preliminary animal studies have shown potential susceptibility to reproductive tumors, and some human studies indicated a slightly increased risk of hypospadias, but findings are not definitive.
Conclusion: Taking Control of Your Health
While there is no definitive test to tell you if you are a DES daughter, a combination of family history, clinical evaluation, and diligent health monitoring is the most effective approach. By communicating openly with your mother and healthcare providers, you can better understand your risk factors and ensure you receive the specialized screenings and care necessary to manage your health proactively. The long-term nature of DES health effects underscores the importance of continued vigilance and informed medical care. The DES Action USA organization offers further resources and support for those impacted by prenatal DES exposure.
