Examining Research Gaps and Barriers to Care for Fibroids

By Emily Ortman, SWHR Communications Director

Many women with uterine fibroids never wear white because heavy menstrual bleeding caused by the condition can lead to accidents of bleeding through their clothes. “I’ve had numerous at work,” patient advocate Paula Gwynn Grant said. “Accidents where I had to wait for everybody to leave the conference room because I knew I couldn’t get up because my seat was soiled.”

She described the embarrassment women with fibroids experience and “the feeling like there is something wrong with you.” Gwynn Grant recalls thinking, why can’t I just live a normal life and why is this happening to me? “You feel very alone,” she said, “because it’s not something we sit around and talk about.”

This tendency of women with fibroids not to wear white inspired the name of the fibroid organization The White Dress Project and reflects founder Tanika Gray Valbrun’s desire to empower the estimated 26 million American women who suffer from fibroids.

Fibroids are non-cancerous tumors that grow in the wall of the uterus and can cause symptoms such as heavy or irregular menstrual bleeding and pelvic pressure or pain. Black women are at increased risk for the disease compared to white women, tend to get fibroids at a younger age, and suffer more severe symptoms.

The Society for Women’s Health Research (SWHR) hosted a diverse group of researchers, clinicians, policymakers, and patient advocates for a virtual roundtable meeting last month to discuss gaps in research, clinical practice, policy, and patient education that need to be addressed to improve health outcomes for patients with fibroids.

Delays in Diagnosis

“Many fibroid symptoms are insidious and unrecognized or attributed to other issues,” said Elizabeth A. (Ebbie) Stewart, MD, a gynecologist and reproductive endocrinologist and professor of obstetrics and gynecology at Mayo Clinic. Because of this, many people with fibroids live for years with their symptoms before seeking treatment. “As patients, we sometimes normalize the condition, normalize the pain, normalize the bleeding,” Gray Valbrun said, adding that women are conditioned to believe it’s just “the plight of a woman.”

Because fibroids can run in families, symptom normalization may be passed down through generations of women. “My mother had fibroids as well, but she never talked about it with me until I was diagnosed,” patient advocate Nkem Osian said, adding that both generational and cultural issues related to stigma play a role in the silence around fibroids.

“If everybody in your family uses a whole pack of overnight pads every other day for their period, then you don’t think that what you’re going through is abnormal,” said Erica Marsh, MD, chief of  reproductive endocrinology and associate professor of obstetrics and gynecology at University of Michigan Medical School.

Diagnosis can be challenging as common fibroid symptoms such as heavy or irregular menstrual bleeding, back pain, frequent urination, and pelvic pain may overlap with symptoms of other gynecological conditions, and some clinicians may dismiss patient concerns entirely. “We weren’t treated when we needed to be because we were not heard when we needed to be,” Gwynn Grant said. “And it led to pain. We all suffered because we were not listened to. Because we were dismissed.”

Need for Better Treatment Options

“Fibroids are a bit like snowflakes. No snowflake is the same and no case of uterine fibroids is exactly the same,” said James Segars, MD, director of the Division of Reproductive Science and Women’s Health Research at Johns Hopkins Medicine. As such, the decision about which fibroid treatment to pursue can be complicated.

There are a variety of medical, non-surgical, and surgical treatments, each with their own risks and benefits, so treatment should be personalized to the patient’s symptoms and priorities. Hysterectomy is the only way to cure fibroids, but it is an invasive surgery that ends fertility and is associated with long-term health risks. Several other treatments also negatively impact fertility, while those that aim to preserve fertility tend to result in fibroid recurrence. In addition, most medical options for managing fibroid symptoms regulate or suppress menstruation and prevent pregnancy.

“We need to develop fertility-friendly therapies,” said Ayman Al-Hendy, MD, PhD, a professor of obstetrics and gynecology at University of Illinois at Chicago.

The experts noted a lack of comparative data on treatment options that would help guide clinical decision-making. Stewart added that there are also no biomarkers, imaging assessments, or risk-based algorithms that can help predict patient response to therapy. More research is needed in these areas as well as in identifying less invasive treatment options without fertility-related drawbacks.

Lack of Research Progress

The experts also stressed a need for increased research funding. In 2019, fibroid research received about $17 million in NIH funding, putting it in the bottom 50 of 292 funded conditions. There are no congressionally mandated earmarks for fibroids, so funding is dependent on the number of grant applications the agency receives and how well they are reviewed.

In order to better treat or even prevent fibroids, researchers need to understand the basic biology of the disease and the genetic mutations that eventually cause fibroids. Marsh also advocated for more research on menstruation generally. “I think understanding the normal period so that we can understand the abnormal period is a place that we need to start,” she said.

She also emphasized the importance of studying the differences between fibroid patients. “There’s so much variability with how fibroids present, if they grow, if they shrink, are they symptomatic, where they are in the uterus, who subjectively is bothered by the symptoms and who is not subjectively bothered by the symptoms,” Marsh said.

Another challenge the experts highlighted is the widely variable incidence and prevalence data on fibroids. Sateria Venable, founder of the Fibroid Foundation, said having more concrete numbers on how many women are diagnosed with fibroids and experience debilitating symptoms would help with advocacy efforts. “The stumbling block that we always run into is the statistics because some of them are kind of vague or inconsistent,” she said.

Finally, there is a great need for research to determine why women of color are disproportionately affected and to better understand the barriers they face in their diagnosis and treatment journey.

A Push for Change 

Ten years ago, there were no major fibroid patient advocacy groups and women with the condition had few places to turn to for support. This is slowly changing as groups like the Fibroid Foundation and the White Dress Project work to raise awareness of the disease and amplify patient voices.

Thanks to efforts by these groups and others, Sen. Kamala Harris and Rep. Yvette Clarke earlier this year introduced the Uterine Fibroid Research and Education Act to expand federal research efforts and bring much needed attention to this overlooked disease. “The patient perspective and the patient voice are really what is going to change the narrative around fibroid research, advocacy and funding,” Gray Valbrun said.