Filling the Gaps in Uterine Fibroid Research 

As an academic, Whitney Robinson, PhD, has researched uterine fibroids for more than a decade, but her familiarity with the condition began much earlier. Growing up, she saw the impact of fibroids on the women in her family – her mother had a hysterectomy in her 40s to treat fibroids. At 44, Robinson did the same.    

Already passionate about researching treatments for fibroids, her experience as a patient deepened her dedication. 

“It's given me more research ideas and deepened my commitment to this work,” said Robinson, an associate professor in the Division of Women's Community and Population Health in the Department of Obstetrics and Gynecology at Duke University School of Medicine.   

Robinson is among the 70% to 80% of women in the United States who have fibroids by age 50. Between 30% to 50% experience symptoms severe enough to seek treatment. Yet, despite being so common, fibroid research remains underfunded and understudied. As a result, there is a lot that is unknown about fibroids.   

“I’m not focusing on why fibroids develop – others are tackling that – but I want to improve treatment,” said Robinson, an epidemiologist. “I want to identify where the gaps in care are.”  

An Understudied Condition  

Although benign, fibroids can cause significant symptoms -- pelvic pain and heavy bleeding – that severely impact quality of life. A 2024 cost analysis showed that the economic burden of uterine fibroids rose from $34.4 billion in 2010 to $41.4 billion in 2022.  

Still fibroids remain a low priority in medical research. The National Institutes of Health acknowledges this gap and is conducting an analysis, called the Assessment of NIH Research on Women’s Health, across its institutes. The goal: to direct more attention toward overlooked conditions like endometriosis and fibroids.  

Robinson and other researchers at Duke, including Friederike Jayes, DVM, PhD, and Evan Myers, MD, MPH, aim to bridge gaps in our understanding of fibroids and make the lives of those affected better. They hope their work ultimately will give women more treatment options.   

“We’re in a position where the best we can do is tell people that most treatments that are out there now seem to work and they seem to work for several years,” said Myers, the Walter L. Thomas Distinguished Professor of Obstetrics and Gynecology at Duke. “But other than hysterectomy, there isn't any guarantee that someone isn’t going to need additional treatment at some point.”  

Researchers cite multiple reasons for the neglect of fibroids. Fibroids are non-cancerous and not fatal, and women’s well-being has historically been deprioritized in medical research.  

“Often the well-being of women is not a huge priority, unfortunately,” Robinson said. “A lot of people who make the decisions about what gets studied have tended to be men, and, as a result, problems that affect women have been understudied.”  

Jayes, an assistant professor in obstetrics and gynecology, added that many women have been taught to ignore or minimize their pain, which gives the impression that the condition isn’t as concerning. “Women are taught by society often that the pain is okay, so women don't come forward with their pain or with health issues, which does not create the momentum needed,” Jayes said.  

Also, more research is still needed to better understand the disparities among those who get fibroids and the treatments they receive. Fibroids are more common in Black women. They also develop fibroids at an earlier age, and experience more severe symptoms.   

The impact of fibroids is far reaching. “We're talking about women who are of reproductive age, and they're very important in their communities, in jobs, in taking care of families,” Robinson added. “When they are unable to thrive because of fatigue from anemia or pain or bleeding, it has a big impact.”  

Toward Better Treatments   

The Comparing Procedures for Improving Symptoms of Uterine Fibroids (COMPARE-UF) Study examined how hysterectomy, removal of the uterus, and myomectomy, a less invasive procedure to remove fibroids, affect quality of life.   

More than 3,100 women enrolled in the study, and most saw substantial improvement in their symptoms regardless of the procedure. However, women choosing hysterectomy had the most dramatic relief.  

“What we found is that most people did pretty well,” said Myers, principal investigator of the COMPARE-UF study. “There wasn't a huge difference in how people were doing in terms of the quality of life.”   

Fibroids are the leading cause of hysterectomy in the U.S. In her work over the years, Robinson has collected data on the characteristics of people who have hysterectomies and found that hysterectomies are more common in certain regions of the United States. For example, they are more common in the South than in the West.   

“We see these big racial and regional differences in people getting hysterectomies when they're pretty young in their 30s and 40s,” Robinson said.   

Their research has revealed that while Black and Hispanic women experience more severe fibroid symptoms, they are not systematically overtreated with hysterectomy. Instead, the findings suggest these patients may be undertreated earlier in their care.  

Next, she aims to investigate why. She’s focused on identifying where the care process falls short and how more women can get the right intervention at the right time.  

A Less-Invasive Option  

Like Robinson, Jayes also has been directly affected by fibroids. “I was probably five years into the research when I found out I have fibroids,” Jayes said. “That brought it closer to home.”  

A basic science researcher, Jayes has focused her research on trying to understand the makeup of fibroids and what makes them grow.   

While hysterectomy is the only treatment that will get rid of fibroids completely, it isn’t always the best treatment option and not everyone wants the surgery, especially women who do not want to lose their fertility, Jayes said.   

Jayes is looking into less-invasive options. Since fibroids are primarily composed of collagen, she has explored using collagenase, an enzyme that breaks down collagen, as a treatment.   

Jayes collaborated on a phase one study conducted at Johns Hopkins in which collagenase was injected directly into fibroids. The study included 15 women who were planning to undergo a hysterectomy. Those treated tended to report reduced pain, an encouraging sign for further research. 

Jayes and the other researchers are seeking approval to go on to conduct a phase two clinical trial with more women to study the efficacy of the drug.   

“If successful, this approach could be much more accessible than current treatments, which require expensive equipment and surgical expertise,” Jayes said. “With ultrasound guidance, doctors in rural areas could perform the procedure in-office at a lower cost.”  

For several years, Jayes has collaborated with researchers at North Carolina Central University to enhance collagenase delivery.  

Darlene Taylor, PhD, professor of chemistry and biochemistry at NCCU, developed LiquoGel, which serves as a platform to deliver drugs to targeted locations inside the body. When mixed with collagenase, LiquoGel remains liquid at room temperature, but solidifies into a gel upon injection into the warmer body, allowing the enzyme to remain longer, letting it do its job of dissolving the fibroids.  

Jayes and Taylor recently received a grant from the Duke Clinical & Translational Science Institute (CTSI) to continue this research.  

Despite its prevalence, fibroid research has long been sidelined. But Duke researchers are determined to change that, working toward treatments that are more effective, accessible, and equitable for all women. 

Bernadette Gillis is a communications strategist in the School of Medicine in the Office of Strategic Communications. 

Photos by Eamon Queeney, assistant director, multimedia & creative in the Office for Strategic Communications.