No One Knows Why Fibroids Are More Common in Black People. Here’s How We Start to Change That

Erica Marsh, MD saw the toll of uterine fibroids on Black women during her childhood in Richmond, Virginia, long before she became an ob-gyn specializing in their treatment. "I didn't know what fibroids were, but I remember associating them with illness and surgery," she says of growing up during the 1970s and '80s.

She saw home-cooked meals being taken over to the houses of her mother's friends as they convalesced after fibroid surgery. She would go on to develop the fibrous, benign tumors in her own uterus later in life.

Meanwhile, as a medical student and ob-gyn resident at Harvard Medical School, Dr. Marsh became familiar with leiomyomas, as uterine fibroids are also known. Her personal experiences intersected with her medical knowledge.

"I was bitten by the bug," she says. She wanted to know why Black people are more likely to develop fibroids than other people with uteruses, tend to develop them at a younger age, experience more severe symptoms and have worse outcomes.

Now, as the chief of the Division of Reproductive Endocrinology and Infertility at University of Michigan Medical School, she considers herself to be a patient advocate and champion.

That mission centers on a condition that affects up to 4 in 5 people with uteruses in the U.S., according to the U.S. Department of Health and Human Services (HHS). These muscular tumors have their own supply of blood vessels and can range from the size of an appleseed to a grapefruit, or even larger. A person may have just one fibroid, or many crowding the uterus.

They are almost always non-cancerous, but still have the ability to affect a person's health, quality of life and even fertility. "They are the leading cause of hysterectomies in the U.S.," Dr. Marsh says. Per the HHS, fibroids are more likely to develop as a person moves through their 30s and 40s, but then they usually shrink after menopause.

Not all fibroids cause symptoms, but heavy menstrual bleeding and painful periods are common complaints. "What leads people to seek care, more than anything else, is really heavy periods, sometimes bleeding in between periods," says Charles Ascher-Walsh, MD, ob-gyn and system senior vice president of gynecology at Mt. Sinai Hospital in New York City.

Sometimes, another painful condition can arise. "Occasionally, the fibroids can outgrow their blood supply. It's called degeneration," he says. Cells in the fibroid die off from lack of oxygen and nutrients, resulting in pain.

"We don't fully understand — or even, quite honestly, partially understand — why fibroids are at a higher prevalence in Black women."

Frequent urination and bloating are other common symptoms, he says. "I have patients all the time telling me that they're exercising and doing sit-ups and they just can't get their belly to be flat, and it's because they have a 10-centimeter mass in their abdomen." Pressure from fibroids can also lead to pain during sex and lower back pain, according to the HHS.

Fibroids can also affect fertility and pregnancy, Dr. Ascher-Walsh says. "They can make it difficult to get pregnant, increase the risk of miscarriage in the first trimester and cause problems later on in pregnancy, like preterm delivery, or at the delivery."

Despite the ubiquity of fibroids, researchers don't know exactly what causes them. Genetics may factor in: Having a family history of fibroids raises your risk of developing them. And hormones such as estrogen and progesterone can cause them to grow, according to the HHS.

Dr. Marsh says researchers are also looking at the possible role of stem cells — ones that have the ability to grow into many different types of cells — in the development of fibroids. For instance, a May 2012 animal study in ‌PLOS One‌ using grafted human fibroid stem cells identified a particular type of mutation that triggers their growth.

And, according to a June 2018 chapter in ‌Uterine Fibroids and Adenomyosis‌, "increasing evidence supports the hypothesis that leiomyomas arise from a stem cell population in the uterus."

Still, more research is needed.

The causes of fibroids may not be clear, but the risk factors are well-known. As mentioned, family history puts you at risk; in fact, if your mother had fibroids, your risk is three times the average, per the HHS. Other risk factors include advancing age (before menopause), having excess weight and eating a lot of red meat and ham.

Then, there's ethnic origin. Over 80 percent of Black women will have fibroids over the course of their lifetime compared to 70 percent of white women, and Black women develop them at a younger age, according to a frequently cited January 2003 study in the ‌American Journal of Obstetrics and Gynecology‌. (In fact, much of the frequently cited fibroid research relating to racial disparities is older, a sign that more research attention is needed.)

A larger but even older December 1997 study of nurses in ‌Obstetrics and Gynecology‌ found on an age-adjusted basis, Black women were three times as likely to be diagnosed with fibroids than white women.

Furthermore, a July 2011 study of nationwide hospital discharge records in ‌American Journal of Obstetrics and Gynecology‌ found Black women were 3.5 times as likely to be hospitalized than white women due to fibroids and 2.4 times more likely to have a fibroid-related hysterectomy, or surgery to remove the uterus.

"We don't fully understand — or even, quite honestly, partially understand — why fibroids are at a higher prevalence in Black women," Dr. Marsh says. But, she adds, there are associations that have been observed between fibroids and certain conditions that might help to explain why, with additional research.

Obesity is one of them, and it's a risk factor for fibroids that's more prevalent among Black women than in other groups in the U.S., according to the HHS's Office of Minority Health.

Another is estrogen levels, which are higher in Black women across the menstrual cycle compared with white women — even when matched by age and body mass index — according to an October 2011 study in the ‌Journal of Clinical Endocrinology & Metabolism‌. "We know that fibroid growth is supported by estrogen and progesterone," Dr. Marsh notes.

"A fertility doctor told me, 'Has anyone ever told you about fibroids? Your uterus is way too compromised. Save your money and get a surrogate.' I remember — vividly — leaving the doctor's office and crying in the parking garage."

Drs. Marsh and Ascher-Walsh both point to a growing body of research that associates low vitamin D levels with fibroid growth and size. "Vitamin D could be a potential inexpensive and safe agent for both the prevention and treatment of [uterine fibroids]," according to an August 2020 review in the ‌International Journal of Molecular Sciences‌.

Yet, people with darker skin are especially at risk for having low levels of vitamin D. More than 80 percent of Black people are deficient in the vitamin compared to 63 percent of Hispanic people and 31 percent of white people, according to a January 2011 study in ‌Nutrition Research‌.

That may be at least in part due to the fact that darker skin needs more sun exposure than lighter skin for vitamin D to be made in the body, as well as socioeconomic reasons affecting whether people of color will choose or have access to vitamin D-rich food such as fatty fish, per the study authors.

Like Dr. Marsh, Tanika Valbrun's world was affected by fibroids at an early age. Her mother had them, and by her early teens in Ft. Lauderdale, Florida, Valbrun was already experiencing symptoms that later became associated with having fibroids. "The heavy menstrual bleeding, bloating, the pain — that all started around age 14 or 15," says the Atlanta-based network news producer.

She's unsure of when her fibroids actually started developing, but by age 19 a doctor had suggested Valbrun undergo dilation and curettage, a procedure used in the diagnosis and treatment of fibroids, in order to discover the source of her heavy periods.

She says her fibroids were "massive" by the time they were officially diagnosed at age 25. Yet, she was counseled by the doctor to take a "watch and wait" approach and was told: "If they're not bothering you, don't bother them."

But what does it mean to be bothered by fibroid symptoms? "I was always just that skinny girl with a belly. I normalized a lot of it because I told myself 'I'm a woman and this is what we go through,' and meanwhile we're not conversing with one another about how much we're bleeding," Valbrun says.

While watching and waiting, she avoided wearing anything white, in case of an embarrassing leak. When a date came to spend the night she made sure to lay out dark sheets and towels.

That reaction is common among fibroid patients, Dr. Marsh says. "A lot will say, 'These are just my periods, right? Doesn't everyone change a pad every 45 minutes? Doesn't everyone have to take time off of work during their period, and doesn't everyone have anemia?" They adapt without questioning whether they should have to.

Nearly a decade went by like that for Valbrun, and then she was 34, married and hoping to have a child. She consulted a fertility doctor, who she says told her, "Has anyone ever told you about fibroids? Your uterus is way too compromised. Save your money and get a surrogate."

Valbrun was stunned. "I remember — vividly — leaving the doctor's office and crying in the parking garage. My husband was there with me, and it was just really sad."

"The informed patient is an empowered patient."

Fortunately, Valbrun found another doctor who came up with a treatment plan that involved medication to shrink her tumors before removal. However, they began to degenerate, which sped up the timetable to remove what turned out to be 27 fibroids. A second procedure removed more fibroids. Her path to fertility continues in her mid-40s.

During her recovery from her first surgery, when she was preparing to return to work, she had an epiphany: "I finally had enough strength to walk upstairs in my house. I walked into my closet and it dawned on me that I had no white clothing. Nothing was even light-colored. So, that was an aha moment for me because I recognized that I had sacrificed my quality of life."

That's when the White Dress Project was born, Valbrun's non-profit created to spread awareness about fibroids and advocate for research funding. "I wanted to use the color as a symbol of hope and freedom and empowerment and inspiration." (She stresses that its mission is inclusive of anyone who has fibroids, regardless of gender identity or expression, and is not just for people who wear dresses.)

Through the White Dress Project, Valbrun and her colleagues have helped to write legislation relating to the naming of July as Fibroid Awareness Month (July 1 is national Wear White Day) and supported the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 (HR 2007), named after a Black member of Congress who sponsored relevant legislation and had uterine fibroids herself, as Valbrun noted in June 2022 during congressional testimony. U.S. Representative Yvette D. Clarke, who introduced it, is also a Black woman who lives with fibroids.

The bill aims to fund research through the National Institutes of Health, totaling $150 million over five years, as well as to fund education about fibroids and the higher risk experienced by people in minority groups.

While advocates like Valbrun seek to educate people about that disproportionate risk, new research suggests Black people differ in the decisions they make about their treatment for fibroids.

In order to understand those findings, published February 2021 in the ‌Journal of Women's Health‌, it helps to first know a little more about fibroid treatment in general.

There's a wide range of options available for treating the tumors, depending on their location, size, the severity of symptoms, how close to menopause a person may be and whether they might want to become pregnant in the future, according to the HHS.

• ‌Over-the-counter pain relievers and anti-inflammatories‌ can be used to manage mild pain, and iron supplements can help prevent anemia from heavy bleeding.
• ‌Prescription hormonal medications‌ can be used to help control symptoms. These include birth control pills, injections and IUDs.
• ‌Surgery‌ can shrink and remove fibroids, or remove the uterus altogether. Common surgical procedures include:
  • ‌Myomectomy:‌ removal of the fibroids by major surgery, laparoscopy or hysteroscopy, without taking out the healthy uterus tissue. Pregnancy can typically occur afterward.
  • ‌Hysterectomy:‌ removal of the uterus. Pregnancy cannot occur afterward.
  • ‌Endometrial ablation:‌ removal or destruction of the uterus lining by a variety of methods to prevent heavy bleeding. Pregnancy cannot occur afterward.
  • ‌Myolysis:‌ destruction of fibroids by inserting a laparoscopically guided needle and freezing them or applying an electrical current. This can create scar tissue and come with other complications that make pregnancy difficult.
  • ‌Uterine fibroid embolization:‌ Also known as uterine artery embolization, this procedure involves cutting off the blood supply to a fibroid with the aim of shrinking it by inserting a thin tube into blood vessels and injecting tiny gel or plastic particles. It's best for people who don't wish to become pregnant in the future.

In the ‌Journal of Women's Health‌ study, Black patients were more likely to schedule treatments that spare the uterus, such as myomectomy and uterine artery embolization, compared with white patients. White people were more likely to schedule hysterectomies. Black people in the study were slightly younger on average (41 years old versus 42).

The study authors noted possible reasons for these differences, including:

• a desire for rapid recovery, out of concern over not being able to take off time from work or caregiving
• a greater distrust of the medical establishment
• a greater desire to have children

They also called for more research into the implications around treatment decisions, given that Black people tend to have worse outcomes from fibroid disease.

However, the results should be interpreted in the context of the sample: All of the patients were at top clinical centers for fibroid treatment, says Dr. Marsh, who was a co-author of the study. Outside of the research environment, Black patients are less likely to have access to the same level of care as white patients, she adds. "What that study tells us is that when given the choice, Black women opt for a less-invasive treatment."

Valbrun thinks there may be a cultural element, as well, to the difference in treatment choices. Within Black families, the experience of hysterectomies has been shrouded in mystery and things left unsaid.

"You hear, 'Grandma's not feeling well. Grandma had the surgery.' There's also a lot of religious and spiritual ideology around it, the idea of us losing a part of our bodies that God gave us," she says. "I think that is because we're in a culture that is, regardless of what you believe, very rooted in spirituality and God."

Ultimately, the health care choices people make involve a complex array of factors, including age, reproductive stage of life, symptom severity, ability to schedule recovery time and cost.

That's why it's important patients are able to share in the decision-making process with their doctors, Dr. Marsh says. She points to guidance from the ‌American College of Obstetricians and Gynecologists‌, which describes shared decision-making as a "patient-centered, individualized approach" that considers all of the benefits and risks of various treatments "in the context of a patient's values and priorities."

If you've been diagnosed with fibroids and would like to come to your doctor prepared to make an informed decision, check out the shared decision-making tools hosted by the non-profit FAIR Health for procedures and medications. The tools ask you a series of questions and present an array of options to ask your health care provider about. You'll also get an estimate of what will be paid to an in-network insurance provider.

The tools are not intended to provide medical advice, but rather are meant to facilitate decision-making conversations, says Robin Gelburd, president of FAIR Health. "Individuals who access the tools on fairhealthconsumer.org should then consult with their clinical providers to discuss and decide on a course of care together."

There's a lot to consider, Valbrun says. That's why her organization helped to develop a uterine fibroids toolkit to help patients understand what questions to ask and how to prepare to make a treatment decision with their doctor. She also wants people to know they have more power than they may think.

"If you understand that you have a choice, that you're a partner with your doctor, that you can confer with groups like the White Dress Project, that you can do your research, then you become an informed patient, and the informed patient is an empowered patient," Valbrun says. "Use all the tools that you can to make your best health care decision, depending on what outcomes you want for yourself."