July 8, 2019

Uterine Fibroids: Raising Awareness for an Overlooked Disease

By Megan Ritchey, SWHR Communications Intern

Women with heavy menstrual bleeding, chronic pelvic pain, and similar symptoms are often unaware that these experiences are not normal. Longtime gender biases in the medical community have resulted in the normalization and dismissal of women’s pelvic pain as an inevitable part of the menstrual cycle, when in fact these symptoms are commonly caused by conditions such as uterine fibroids.

Uterine fibroids are non-cancerous tumors of varying sizes and amounts that grow in and around the uterus. Women can have just one fibroid or many fibroids clustered together, and they can range in size from tiny seedlings to as large as a melon. Race, age, diet, and family history are risk factors for fibroids, yet the cause of fibroids is still unknown.

While 80% of African American women and 70% of white women will have fibroids by age 50, less than half will experience the related symptoms like heavy bleeding, pelvic pain, bloating, urinary problems, painful sex, and back pain. In some cases, symptoms can be severe and disabling, leading to anemia, urinary tract infections, or kidney damage. Uterine fibroids can also affect a woman’s fertility and are linked to pregnancy complications like miscarriage, early labor, placental abruption, and fetal growth restriction.

Nkem Osian, patient advocate

Nkem Osian, a patient advocate with fibroids group the White Dress Project, said she experienced symptoms for several months before they became so severe that she couldn’t ignore them any longer. “I couldn’t walk up a flight of stairs without feeling like I was going to pass out,” she said. “It got to a point where I would feel a ringing in my head.”

Osian had lost so much blood that she was severely anemic, and her doctor instructed her to go immediately to the emergency room, where she ended up receiving a blood transfusion. During a battery of tests, doctors found a large fibroid on her uterus.

Despite the prevalence and significant impact of fibroids, public awareness about the condition is extremely low. SWHR recently kicked off a science program to address the gaps in research, diagnosis, treatment, and patient care for conditions that cause chronic pelvic pain and heavy bleeding, like endometriosis and fibroids. Other nonprofit groups like the aforementioned White Dress Project and the Fibroid Foundation are also calling attention to fibroids and declaring July as Uterine Fibroids Awareness Month.

Limited attention on fibroids in both society and the medical community means that at-risk women do not have access to the information they need about the disease. A recent study in the Journal of Women’s Health found that only 49% of “at-risk” women — those who had symptoms suggestive of fibroids but not a clinical diagnosis — had heard of uterine fibroids. Following the onset of their symptoms, most of these women (60%) tried to manage symptoms themselves or waited to see if the symptoms went away (50%).

In Osian’s case, she knew what fibroids were because her mother has them as well. However, her story demonstrates that fibroid awareness and education is still necessary even for those who know about the condition. “When I first experienced the symptoms, fibroids weren’t in my mind even though my mother experienced this,” she said. “I just thought, ‘My body is probably going through hormonal changes. This is normal.’”

Even when women do receive a fibroids diagnosis, their treatment options are limited and often affect their fertility. To relieve pain associated with uterine fibroids, women can take over-the-counter acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs), but these are just a temporary fix for pelvic pain. Some forms of birth control can help alleviate heavy bleeding but don’t work for all women and are not an option for women trying to get pregnant.

Surgical options to remove or shrink fibroids — such as myolysis, uterine artery embolization, myomectomy, and endometrial ablation — work well for some women, but fibroids may grow back or new ones may develop. Some of these treatments may also affect a woman’s ability to have children. “One of my fears in getting the surgery is I know that 50% of the time the fibroids grow back within 2 years,” Osian said. “I don’t want to keep getting the surgery before I have children because that is such a harsh surgery in such a fragile area.”

While the treatments mentioned above can relieve some symptoms or temporarily remove or shrink fibroids, the only definitive and permanent treatment for uterine fibroids is hysterectomy. However, this is only an option for women who don’t want to have children in the future. Estimates show that about 600,000 hysterectomies are performed each year in the U.S. and that fibroids account for 51.4% of them.

“I’m really hopeful that there will be more attention raised about this issue that will lead to more funding for research and better or more expansive treatments,” Osian said, reflecting on the lack of treatment options.

Raising awareness about uterine fibroids and recognizing July as Uterine Fibroids Awareness Month can help spark more conversations about menstrual issues and lessen the taboo around these topics, encouraging more women to talk to their health care providers and strengthening the call for increased investment in research and better treatments.