Health Care Providers

 

Gynecologists’ Guide to DES Daughter Care

Print our 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:

  • infertility
  • spontaneous abortion
  • ectopic pregnancy
  • second trimester pregnancy loss
  • preeclampsia
  • preterm birth
  • stillbirth
  • 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

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 from the CDC for doing the annual DES Daughter Pap/pelvic exam.
    • 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 DO NOT APPLY to DES Daughters. See the second sentence in the Recommendations section where that is clearly spelled out.

Breast Cancer in DES Daughters

Vigilance in breast cancer screenings is warranted as DES Daughters age past forty because of an increased risk for the disease that is almost twice as high as for unexposed women. The research on this was published in the journal, Cancer Epidemiology Biomarkers.

  • 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

According to research results from the NCI DES Follow-up Study, DES Daughters are also at increased risk for:

  • Cardiovascular disease (stroke, coronary artery disease and heart attack)
  • Diabetes
  • Osteoporosis
  • Fractures

 

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
  • Cryptorchidism
  • Microphallus
  • Testicular Inflammation/Infection
  • 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 (stroke, coronary artery disease and heart attack)
  • Diabetes
  • Osteoporosis
  • Fractures

 

Gender Issues

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.

 

DES Grandchildren

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
    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.
  • Hypospadias
    Two European studies 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.

 

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