Heavy menstrual bleeding. Painful periods. Fatigue from anemia. Never wearing white (ever). Spending hundreds of dollars a year on tampons and pads because you have to wear both. These are just a few examples of what it's like to live with uterine fibroids, a topic nobody wants to talk about. Uterine fibroids are very common non-cancerous tumors that develop in the muscle of the uterus that can change the quality of your life.
Uterine fibroids are the most common reason why a woman will have a hysterectomy, and hysterectomy is the second most common surgical procedure in premenopausal women (first is cesarean section for childbirth). About 70% of white women will have uterine fibroids at some time during their lives, though not every woman will have symptoms. The number is even higher for African-American women — who may develop fibroids at a younger age and have more severe symptoms.
Tanika Gray, a broadcast journalist, communications professional, and founder and executive director of The White Dress Project, describes how some women with fibroids often do double duty: "We start thinking that all the compensations we are making are normal. We have to be diligent all day, every day (and night). We are constantly checking to make sure we have supplies and changes of clothes. After sitting, we look back to check our chairs for blood. And how many dates have been ruined? How many mattresses have been destroyed? How many times do we have to go to the bathroom to check — just to be sure? Living with fibroids is traumatic and exhausting! It's so stressful!"
Georgia, Florida, New York, and New Orleans have declared July as Fibroid Awareness Month, and there is hope that this will become a nationwide designation. Awareness will bring fibroids out of the closet and into the public discourse so women may feel more comfortable discussing fibroid symptoms with their health care providers.
Talking about fibroids is a big first step. No one likes to discuss how much they're bleeding, painful intercourse, or not being able to wear tight pants because of a belly pooch. But we have to start the discussion so that women know they're not alone and that many different treatments are available. A hysterectomy isn't the only option.
With uterine fibroids being so common, why don't we know more about treatment options and what treatments will work best for different women? A registry entitled The Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF) is a research project that hopes to answer these questions by following women over time who are receiving treatment for their fibroids. Funded by the Patient-centered Outcomes Research Institute in partnership with the Agency for Healthcare Research and Quality, the COMPARE-UF registry will enroll 10,000 women at clinics affiliated with nine medical centers across the United States and follow them for about five years.
Dr. Evan Myers, principal investigator for COMPARE-UF and professor in the Department of Obstetrics and Gynecology at Duke University School of Medicine, says, "One of the things that makes fibroids difficult to study is that they cause lots of different kinds of symptoms, and the symptoms can be complex, ranging from fairly minor discomfort to infertility. This registry, for the first time, will help us collect strong, relevant information from the patients themselves that can then be analyzed to determine what treatments work best for which women." COMPARE-UF will benefit both women suffering from fibroids and their health care providers because it can offer valuable information for patient-provider discussions about the long-term outcomes of various fibroid treatments.
Learn more about uterine fibroids, fibroid treatments, and the COMPARE-UF registry at compare-uf.org.
The statements and opinions in this blog post are those of the author and do not necessarily represent the views of the U.S. Department of Health and Human Services' Office on Women's Health.