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Growing up, Erica Marsh remembers visiting aunties in the hospital and taking food to her mom’s friends who were recovering from surgery.
They all suffered from the same condition: uterine fibroids.
“I didn’t really know what fibroids were except that they seemed to impact many of the women in my life,” says Marsh, M.D., chief of the division of reproductive endocrinology and infertility at the Center for Reproductive Medicine at Michigan Medicine Von Voigtlander Women’s Hospital.
Not until years later, as she went through medical school and training in obstetrics and gynecology, did she learn more about the prevalent disease that is the top reason for hysterectomies – and ultimately devote her career to improving treatment for it.
By age 50, nearly two-thirds of women experience uterine fibroids, noncancerous tumors that grow in the uterus and range from pea to football sized and even larger. While some women with fibroids don’t have symptoms, others have significant pain, anemia, bleeding, increased urinary frequency, fertility problems and pregnancy complications.
And they disproportionately impact women of color. Black women are diagnosed with fibroids roughly three times as frequently as white women, develop them earlier in life and tend to experience larger and more numerous fibroids that cause more severe symptoms.
Nearly a quarter of Black women between 18 and 30 have fibroids compared to about 6% of white women, according to some national estimates. By age 35, that number increases to 60%. Black women are also two to three times more likely to have recurring fibroids or suffer from complications.
The reasons for the disparities are unclear, although research offers some clues.
Fibroids have been associated with potential risk factors, including starting periods at younger ages, obesity, stress and lower Vitamin D levels.
“There are several possible risk factors that may be more prevalent among Black women that could contribute to the growth and substance of tumors,” Marsh says. “But none of these factors have been proven to cause fibroids.”
“We need more data to better understand why Black women get fibroids more frequently and with more severity.”
Black women are also at least twice as likely as white women to remove their uterus through a hysterectomy. A third of hysterectomies are done during peak childbearing years between ages 18 and 44.
“Despite minimally invasive options, Black women continue to dominate the percentages of women having hysterectomies for benign disease,” Marsh says. “We need to understand why.”
In less severe cases, women are often advised to manage symptoms through medical treatment and “watchfully wait” instead of undergoing permanent surgery. Other minimally invasive options include embolization or ablation – which destroy fibroid tissue to ease symptoms – or surgically removing fibroids through a myomectomy.
Inclusive research is key
Research is lacking on how fibroids impact different minority groups, an area Marsh’s studies aim to shed more light on – specifically how the disease affects Latinx and Asian patients.
“There is a dearth of data on how fibroids affect Hispanics and other underrepresented groups. We hope to better understand the symptoms, effectiveness of treatment and prevalence among all women,” Marsh says.
“Research has taught us that if you’re not included, then you’re not represented. We want to make sure research is inclusive and reflective of everyone affected by this disease.”
Marsh’s previous research also suggests that fibroids may cause more than physical pain – some women with the condition experience significant distress that negatively affects quality of life, including depression, anxiety and body image issues. This psychological impact particularly affected racial and ethnic minorities and women in lower income brackets.
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