Gynecologists’ Guide to DES Daughter Care
Print this pdf for your next doctor’s appointment. We developed this document for providers, primarily Ob/Gyns, who see DES Daughters. It contains DES screening directions and guidelines from respected authorities such as the U.S. Preventive Services Task Force; Centers for Disease Control and Prevention and the National Cancer Institute. It lists increased health risks for DES Daughters that have been definitively associated with prenatal DES exposure. (We used to call this the Toolkit, but we’ve renamed it and made it printable.)
DES Daughter Overview
On October 6, 2011 the New England Journal of Medicine published an article listing the Adverse Health Impacts for DES Daughters based on results of research from the National Cancer Institute DES Follow-up Study. According to lead author Robert N. Hoover, M.D., Sc.D., researchers can say conclusively that prenatal DES exposure is linked to twelve adverse health problems for DES Daughters. They are:
- spontaneous abortion
- ectopic pregnancy
- second trimester pregnancy loss
- preterm birth
- neonatal death
- natural menopause prior to the age of 45
- cervical intraepithelial neoplasia grade 2 or higher (CIN2+)
- breast cancer after age 40
- clear cell adenocarcinoma of the vagina and cervix
***For a more complete description of other health risks including endometriosis, uterine fibroids, and paraovarian cysts, please go to the DES Daughters page
*We urge health care providers to include a question on patient intake forms about DES exposure. It is part of an individual’s health history and has consequences for care.
DES Daughter Gynecologic Screenings
According to the Centers for Disease Control and Prevention (CDC), DES Daughters require a special gynecological exam every year.
- Directions for doing the annual DES Daughter/DES Granddaughter Pap/pelvic exam are incorporated from the CDC directions.
- This screening is similar to a routine exam but is more comprehensive, focusing on the vagina.
- DES Daughters who’ve had a hysterectomy will also want to have this screening yearly to check for the vaginal cancer (clear cell adenocarcinoma) linked to prenatal DES exposure.
- The US Preventative Services Task Force (USPSTF) clearly spells out that while unexposed women may skip years between Paps, the rules are different for DES Daughters. Their GUIDELINES for unexposed women DO NOT APPLY to DES Daughters. USPSTF Cervical Cancer Screening Guidelines specifically state: “These recommendations also do not apply to individuals with in utero exposure to diethylstilbestrol.”
Breast Cancer in DES Daughters
Breast cancer has many risk factors and DES exposure is one of them. Previous studies have shown a small increase in risk among DES Daughters throughout their lifetime. However, in the latest analysis by the National Cancer Institute, there was up to a 30% increase in breast cancer risk in DES Daughters in their 40s.
To put this in context, the NCI’s Surveillance, Epidemiology, and End Results (SEER) Program estimates the risk of breast cancer as 1.5% at age 40 to 2.4% at age 50. A 30% increased risk means approximately 2% to 3.1% from 40 to 50. Much of the increase in risk appears to be caused by the effects of DES on fertility, mainly later age at first childbirth. The excess risk appears to begin lessening after age 50 even though breast cancer risk in general – independent of DES exposure – tends to increase with age. https://www.ncbi.nlm.nih.gov/pubmed/29124779 Cancer Epidemiology Biomarkers. A 2017 updated study appears in: Environmental and Molecular Mutagenesis.
- Annual breast screenings
- Yearly clinical breast exams
- Attention to their own breast health by DES Daughters who will alert providers to changes
Treatment Considerations For DES Daughters
Treatments for DES Daughters are the same as for unexposed women in most areas.
The exception is for gynecologic procedures because cervical stenosis is a concern in this population, especially from cryosurgery and cone biopsy, which DES researchers suggest should be approached cautiously. (Cervical Stenosis Following Minor Gynecologic Procedures on DES-Exposed Women,” Obstetrics & Gynecology 56:33, Sept. 1980)
- DES knowledgeable providers are favoring LEEP for DES Daughters, understanding the least invasive but diagnostically correct procedure is the goal
Additional information is available at the CDC’s DES Update website in the “For Health Care Providers” section. While a valuable resource, the site has not been updated regarding breast cancer risks for DES Daughters.
Other Medical Conditions for DES Daughters and DES Sons
According to research results from the NCI DES Follow-up Study, DES Daughters and DES Sons are also at increased risk for:
- Cardiovascular disease (coronary artery disease and heart attack)
- High Cholesterol
DES studies continue with additional medical issues now linked to exposure. These conditions have been found to occur in higher rates for DES Daughters and DES Sons compared with individuals who were not exposed. Specifics on the findings developed from NCI DES Follow-up Study research are in a DES Action VOICE newsletter article. Scientists had been seeing mounting evidence that endocrine disruptors, of which DES is one, are implicated in increased risks for cardiovascular disease. Therefore, this study’s results were not totally unexpected. The results on cardiovascular disease were reconfirmed in a study published in October 2017. No special screenings or treatments have been identified, but DES Daughters and DES Sons should stay aware of potential increased risks and check with their doctors for screenings they made need.
Information Regarding DES Sons
There are no special screening guidelines or treatments established for DES Sons. But they are at risk for several health conditions. This fact sheet has information regarding DES Son’s medical conditions.
- Epididymal Cysts
- Testicular Inflammation/Infection
- Testicular Cancer
- Infertility (DES Sons are slightly more likely than unexposed men to experience infertility)
According to research results from the NCI DES Follow-up Study, DES Sons join DES Daughters at increased risk for:
- Cardiovascular disease (coronary artery disease and heart attack)
- High Cholesterol
Endocrine disruptors are being examined in gender identity studies, but DES research has not found a conclusive DES link. One confounding thought now under investigation regards the layering of endocrine disruptive exposures, both prenatally and perinatally.
Researchers want to understand if there is an association and whether DES exposure might itself by the cause, or perhaps combined with other exposures be a trigger for variations. Please see the most recent studies on Sex, Sexuality and Gender and DES Exposure .
There are no special screenings or treatment guidelines established for DES Grandchildren. This is what research has found thus far for this group:
- Delayed Menstrual Regularity, Skipping Periods, Having Preterm Birth Delivery
Published research points to the strong possibility that DES Grandchildren, the third generation, may have been affected by the DES prescribed to their grandmothers. Specifically, DES Granddaughters seem to be at increased risk for delayed menstrual regularity, with hints of infertility. Research on this is continuing. A study published in Reproductive Toxicology in December 2018, shows DES Granddaughters have a higher risk of irregular menstruation, of going at least six weeks without a period and of having a preterm birth delivery than other women in the population whose mothers were not DES Daughters. DES Granddaughters should tell their doctors of their 3rd generation DES exposure and get the appropriate screenings and care if they are experiencing any of the conditions above, or if they plan to become pregnant or are pregnant.
Two European studies from 2011 journals show this birth defect in higher rates for DES Grandsons compared with unexposed males. Of note is that American researchers have failed to replicate those results. A more recent review paper, conducted by researchers at Dartmouth’s Geisel School of Medicine, was published in the journal Current Environmental Health Reports in December 2018. DES is one of several chemicals already linked to hypospadias in past research. Several studies, including ones from the US, France and the Netherlands, have found a substantially higher risk of hypospadias in DES Sons, and the French study found a higher risk in DES Grandsons as well.
*Please see information on more conditions, risks, with possible links to 3rd generation DES exposure, and links to recent studies on our DES Grandchildren page.