When Patricia Royall was 28-years-old she was rushed to the emergency room with massive bleeding. The diagnosis: cervical cancer. “The doctor who treated me asked if I was a DES daughter and I told him I didn’t know,” says Patricia. “He told me I had some reproductive abnormalities that he had seen in other DES daughters, and explained that if my mother had taken DES while she was pregnant with me, I would need to make sure all of my future doctors and health care providers knew that I had been exposed to DES.”
DES, or diethylstilbestrol, is a synthetic estrogen that was prescribed to millions of pregnant women between 1940 and 1971 to prevent miscarriages and premature labor, and other complications. In the 1950s it was proven ineffective and usage declined.
It wasn’t until 1971 that the Food and Drug Administration warned physicians to stop prescribing DES to pregnant women after research uncovered an increased risk of a particular type of cervical and vaginal cancer.
It turns out Patricia’s mother had taken DES. “I’m one of five children,” explains Patricia. “My mother had a miscarriage before she became pregnant with me. As soon as she became pregnant with me, she was immediately put on DES for the full term of her pregnancy.”
Her mother did not take DES with her other four children and none except Patricia have had cancer of any type.
According to the National Cancer Institute, “DES is now known to be an endocrine-disrupting chemical, one of a number of substances that interfere with the endocrine system to cause cancer, birth defects, and other developmental abnormalities.”
Over the years, Patricia has endured a series of health issues beyond cervical cancer, including endometriosis, uterine fibroids and a miscarriage. “My only son Nathaniel was born premature,” she recounts. “I was put on bed rest for eight weeks before he was due. I had what is called an incompetent cervix, which is another side effect of DES exposure. It can’t hold the weight of the baby, so it has to be tied like a drawstring bag and cut just prior to delivery.”
About four years ago, at the age of 54, Patricia was diagnosed with breast cancer, and if that weren’t enough, since then a precancerous growth was found in her colon and she developed an autoimmune disease. Her mother was also diagnosed in her late 50s with cancer in both breasts. Some studies have suggested that after age 40, DES daughters have approximately twice the risk of breast cancer as women of the same age who weren’t exposed.
Patricia is now one of more than 60 women who are suing 14 major drug companies, including Eli Lilly and Co, which once dominated the DES market. “Last year a federal judge determined that the drug companies were negligent in warning physicians and their patients about the health risks associated with DES exposure and ordered mediation,” she explains. “The mediation failed, so now a bellwether trial (juried trial) has been scheduled.”
A bellwether trial is used when a large number of plaintiffs have filed suit based on the same claim. A group is chosen to represent all of the plaintiffs. Their cases go to trial and the results act as a bellwether, or indicator of future trends, for the remaining cases. Patricia is part of a Mass Tort Litigation labeled Fecho Sisters vs. Eli Lilly, but is also listed on the court docket as Royall vs. Eli Lilly.
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 Patricia is involved in is supposed to be the first major suit that alleges a link between DES and breast cancer in DES daughters over the age of 40. Opening statements will take place on Monday, January 7th in federal court in Boston. Patricia will be in the courtroom, although doesn’t know yet if she’ll be called to testify.
No matter what the outcome, Patricia’s biggest concern is spreading the word about DES. “The sad part,” she says, “is millions of women and their baby boomer sons and daughters were exposed to DES and have absolutely no clue. I believe getting the word out about DES is important. If someone finds out they have been exposed they can begin to take the necessary health precautions.”
Diane…thanks for getting the word out about DES. It’s also very important to educate doctors on the side effects of DES ( some of which are long term) and to take their DES patients seriously. I have had resistance from several of my doctors. This resistance probably comes from the fact that many of the side effects of DES don’t show up until many years later. It also means DES daughters and sons need to be educated, proactive, and vigilant in advocating for their own health.
Hello Diane
Thanks for the article. I was born in 1953. I believe that my mother was prescribed DES, at least I remember her telling me that. I’ve suffered from fibroid tumors, endometriosis and miscarriage. I had fertility problems and had to see a specialist. I had a rare autoimmune illness shortly after the birth of my daughter. I have one daughter, age 29. I had a very difficult pregnancy, threatening miscarriage from an incompetent cervix. My daughter also had a troubled pregnancy. Do you know of the best course to take to try and find out if my mother was indeed prescribed DES?
Thanks,
Diane
Diane,
Thanks for your comment. The information below comes from Patricia, the woman I profiled in the blog. Good luck!
-DES Action USA
P.O. Box 7296
Jupiter, FL 33468
Contact us by email at info@desaction.org
1-800-337-9288
http://www.desaction.org/
-desinfo411.wordpress.com
-CDC:
http://www.cdc.gov/des/consumers/download/do3_update.pdf
-Finding Out If You Were Exposed to DES
Because DES was given to pregnant women between 1938 and 1971 it is often difficult to determine whether exposure occurred. DES Action USA recommends sending self-addressed stamped envelopes, rather than making phone calls to obtain the necessary records. 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.
Women may have taken other drugs during pregnancy and determining which drug might have contained DES is sometimes difficult. If DES is included it usually states DES or Stilbestrol. If you are unsure about the drugs given contact DES Action at 1-800-DES-9288 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.
[…] 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 […]
I was a DEs Daughter and had a hysterectomy @ 29 due to it I have a daughter with hashimoto s ,,,, I was curious if there is a current lawsuit in progress
Elizabeth, I don’t know about lawsuits but this website might provide some information: https://desaction.org/
I am a 57 year old DES female offspring just diagnosed with cervical cancer. I’ve had several miscarriages, was fully developed and mentruating at age 11 with horrific cramps, vomited, and bleeding.
I know name of prescribing doctor in 1961-1962 but his records “vanished”.
I need assistance.
BTW…at age 32 had cone biopsy due to abnormalities but had no idea it was DES related until my Mom told me she researched and worried since I was very young, developing fully WAY too young and with such horrendous periods at age 11 with 34DD breasts and severe depression that sparked at that time and just became part of me. Treatment fir the depression impossible. I just deal with it. But now cancer, different issue
Thank you.