How to Find Out if You Are a DES Daughter

DES daughter Patricia Royall and her mother, the late Virginia Inness-Brown Conn

Since my post about the DES breast cancer trial that gets underway in Boston this week, I’ve been asked how you would know if you were exposed to DES.

DES, or diethylstilbestrol, is a synthetic estrogen that was prescribed to millions of pregnant women between 1938 and 1971 to prevent miscarriages and premature labor, and other complications. It was later found not only to be ineffective but also that it had harmful side effects.

Known DES health risks (courtesy CDC) 

  • Women prescribed DES while pregnant are at a modestly increased risk for breast cancer
  • Women exposed to DES before birth (in the womb), known as DES daughters, are at increased risk for: Clear cell adenocarcinoma (CCA) of the vagina and cervix •  Reproductive tract structural differences •  Pregnancy complications •  Infertility
  • Men exposed to DES before birth (in the womb), known as DES sons, are at increased risk for non-cancerous epididymal cysts.

Since the 1970s, thousands of lawsuits have been filed as a result of the alleged link between DES and cervical and vaginal cancer, as well as fertility problems. Many of the cases were settled out of court. The case that is about to be heard in federal court in Boston is reportedly the first major suit that alleges a link between DES and breast cancer in DES daughters over the age of 40.

Finding out if you were exposed to DES
Unfortunately, many people have no idea that they were exposed to DES or that they are at risk of potential health issues. According to DES Action USA, because the drug was given to pregnant women so many years ago, even for individuals with DES-related health issues, it is often difficult to determine whether exposure actually occurred.

Medical records can be found in some of the following places:

  • Physician
    If the physician is still practicing you can request all medical records in writing. If he is no longer in practice or has passed away his records may have been transferred to another physician or you can call the health department in your county to find out who has the records.
  • Hospital
    Write to the medical records department of the hospital where the birth took place.
  • Pharmacy
    If you know what pharmacy was used you may be able to get records from them, however some pharmacists may not have records that old.

DES Action recommends sending self-addressed stamped envelopes, rather than making phone calls to obtain the necessary records.

Women may have taken other drugs during pregnancy and determining which might have contained DES is sometimes difficult. If DES is included it usually states DES or Stilbestrol. If you are unsure, contact DES Action USA at 1-800-DES-9288 or by email and someone will help you decide whether the drug did contain DES.

If you have difficulty obtaining your mother’s medical records inform the physician, hospital, or pharmacy that these are your birth records. Although the records are owned by the provider you have a right to see and copy those records.

If a military physician cared for the pregnancy you can call 1-800-827-1000 and request Standard Form 180 to get your records.

If the records cannot be located, but you have reason to believe that you may have been exposed to DES, your physician may want to follow the guidelines for DES exposure just to be on the safe side.

DES trial updates
If you would like to know what is happening with the DES breast cancer trial, DESInfo will be providing regular updates.  Opening statements, which had been scheduled for Monday January 7, will now take place on TUESDAY, JANUARY 8 at 9 a.m. at the John Joseph Moakley U. S. Courthouse in Boston, MA.

Send me a comment if you have any questions, and I will do my best to find you the answers.

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.