Why Are Black Women Disproportionately Affected by Uterine Fibroids? | cpvvalves.com

Why Are Black Women Disproportionately Affected by Uterine Fibroids?

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When Erica Marsh, MD, was a young girl, it was common for the adults around her to talk about these things called fibroids.

“Fibroids” were the reason she had to go visit her relatives in the hospital. “Fibroids” were the reason Mom would bring food over to a family friend who just had surgery.

As a child, she couldn’t wrap her mind around what was going on for so many women in her life and what fibroids had to do with it. It wasn’t until Dr. Marsh, now a specialist in biological and social disparities in reproductive health at the University of Michigan, started her training as an ob-gyn that she began to understand what uterine fibroids are and why the condition disproportionately affects people who look like her. Her circle of loved ones was just a small reflection of the prevalence of this deeply painful experience for so many Black people in the United States.

Uterine fibroids—abnormal, noncancerous tumors that grow in or on the womb—are incredibly common. In fact some researchers estimate about 70% percent of people who have a uterus will develop fibroids by the time they are 50 years old.1 Black people are three times more likely than white people to have uterine fibroids, and they tend to develop them at younger ages, Monica Best, MD, a reproductive endocrinologist at Reproductive Biology Associates in Atlanta, tells SELF.

Somewhere between 50 to 75% of people who have uterine fibroids,2 also called leiomyomas or myomas, don’t experience noticeable signs of the condition, but Black individuals tend to have larger growths as well as a higher number of them. Fibroids can be as small as a pea for some folks and grow up to six inches wide for others, which can distort the typical shape of the uterus, per the American College of Obstetricians and Gynecologists (ACOG).

This can lead to severe symptoms and potential complications like heavier and longer periods, awful cramping, painful sex, debilitating pelvic or back pain, abdominal bloating, constipation, excessively needing to pee, fertility issues, and anemia, among others.3 Understandably, living with symptomatic fibroids—particularly the pain of it all—makes it really difficult to feel energized, give your attention to friends, family, and other loved ones, excel at a job or even keep one, have a safe and enjoyable sex life, and just move about comfortably. The burden has pushed many Black people—like the women from Dr. Marsh’s childhood—to have their uteruses removed altogether via a hysterectomy. But there are effective fibroid treatment options that are less extreme than surgery to remove an organ.

So why do these racial disparities persist? We asked ob-gyns to break down the potential causes of uterine fibroids, how they uniquely affect Black people, and what empathetic treatment and support look like.

Experts don’t fully understand what causes uterine fibroids—but there are some theories about why Black people are more affected by them.

No one—not even doctors—fully knows what causes uterine fibroids, according to Dr. Marsh. We don’t have enough concrete data on the disparities due to a lack of federal funding for inclusive fibroid research, but the studies we do have point to some clues about what may fuel the development of these painful growths in Black people. Here’s what we know so far:

Genetics

About 65 to 70% of people with fibroids have a specific genetic mutation, Dr. Marsh explains.4 It’s found in the MED12 gene, which plays a role in many of the body’s normal processes, like cell growth. And when these processes are messed up due to something like a mutation, certain cells can start to split up and grow out of control, resulting in a tumor. It’s not clear what causes this mutation to appear, Dr. Marsh says, and more research is needed to determine if the mutation itself leads to abnormal tissue in the uterus.

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But according to data from a 2021 study published in Reproductive Sciences, MED12 mutations are more common in Black people (74.5%) compared to white (65.8%) and Asian (53.2%) people.5 It’s known that having a family history of fibroids increases your chances of developing them, but some experts suggest that the MED12 mutation is not hereditary. Meaning, even though it seems like fibroids run in the family, genetics seem to be just one piece of the puzzle.

Exposure to certain chemicals

The well-meaning aunty who told you to “stay away from those relaxers” may be onto something. Phthalates, which can be found in some hair relaxers—straightening products used by millions of Black people in the US—have been connected to uterine fibroids, according to various studies.1,6 The use of these products is also linked to other reproductive health conditions, including breast cancer.7

Phthalates are chemicals that are used to make durable plastics and dissolve other materials, and we’re all exposed to them daily. They’re used in vinyl flooring, lubricating oils, garden houses, and, yes, personal-care products like soaps, shampoos, and hair sprays (in which they’re often stealthily listed as “fragrance” or “perfume” on the ingredients label).

More research is needed to understand the possible link between fibroids and relaxers, but one thing is pretty evident: Studies show Black women use these hair products, many of which contain chemicals that are thought to be hormone-disrupting, at a much higher rate starting at a much younger age than white women—often due to the pressure to conform to racist beauty standards.1

Black folks, according to a 2020 analysis of data from more than 38,000 women, tend to have a higher exposure to phthalates, among other questionable chemicals, in part due to these hair products.7 And when certain phthalates are inhaled or absorbed into the skin, they’ve been shown, at least in rat studies, to potentially act like estrogen in the body, a hormone that is believed to play a role in the growth of fibroids, per the ACOG.

Vitamin D deficiency

While the potential connection between diet and uterine fibroids is complex, a low intake of fruits and vegetables is generally associated with a risk of developing them. Many experts also agree that vitamin D deficiency is a notable risk factor.8 In fact, in one small study published in 2019, researchers found that a vitamin D treatment regimen may shrink fibroids in people who are deficient.9

People with darker skin tend to have a higher incidence of vitamin D deficiency, and not just because increased pigmentation can reduce the skin’s ability to make vitamin D from the sunlight. (Which, by the way, is an oversimplified theory to begin with.)

The reality is, one in five Black households is located in a “food desert,” meaning they live in areas with fewer grocery stores, restaurants, and farmers markets, limiting their ability to eat a well-rounded, nutrient-rich diet. This includes high-quality, affordable foods that naturally contain vitamin D, like fish, eggs, and mushrooms.

Early puberty

According to a study published in the Journal of Epidemiology, kids who get their periods at 11 years old or younger are more likely to eventually develop uterine fibroids. (The researchers wrote that these results were true regardless of race, but it’s worth noting the study’s participant pool was heavily skewed toward white individuals.)10

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This all comes back to how estrogen behaves in the body, as the hormone increases during puberty and is thought to drive fibroid growth. “Starting puberty earlier is a risk factor,” Dr. Best says, “and we know that African American girls start puberty earlier than their white counterparts.” But (surprise!) no one really knows why that’s the case.

Chronic stress

Stress can manifest emotionally and physically in many ways, but its possible connection to uterine fibroids is still unclear. There’s some speculation, but not enough strong evidence to confirm, that experiencing multiple and deeply stressful life events can potentially fuel fibroid growth.11

“There’s a number of us [researchers] interested in how the chronic stress of [Black people’s] everyday experiences” influence uterine health, Dr. Marsh says. “That could be [dealing with] racism, sexism, financial stress, the stress of driving while Black, you know?”

Dr. Marsh and her team have discovered Black individuals are generally disproportionately subject to chronic psychological stress as well as childhood trauma, and both experiences are associated with a higher fibroid risk.12

Black people are more likely to experience severe fibroid symptoms—and the “strong Black woman” stereotype plays an insidious role in that.

In her research, Dr. Marsh has found that many people have not been educated on what healthy menstruation looks and feels like. Instead, if their sisters, friends, or mother had painful, heavy, long-lasting periods, they believed that’s how it should be for them too.

“It is so common in our community to have fibroids and suffer,” Dr. Best says. “When you internally normalize something, you’re not going to necessarily bring it up to your physician.”

“We’re also taught as African American women to just suck it up,” she adds—and this may prevent people from asking for help when experiencing pain. “I remember one study subject who said, ‘It didn’t kill me, so it just makes me stronger,’” Dr. Marsh says. “That’s not the bar we want to set for our periods.”

Dismantling the “strong Black woman” stereotype also requires more probing from doctors, according to Obiamaka Mora, MD, a gynecologist at Avant Gynecology in Atlanta. It’s not always enough to ask if a person’s period is normal. “When you start dialing down on what their symptoms are,” she tells SELF, “and they start really explaining things, it’s interesting how you can make someone realize that maybe [things are] not normal.”

Typically, the earlier fibroids are detected, the better chances your doctor has of treating them if needed, Dr. Mora says. While some fibroids never change and cause no issues, some can grow, making symptoms more intense, and in very rare cases, potentially life-threatening. For example, if your heavy periods are causing persistent anemia—meaning your body isn’t producing enough healthy red blood cells compared to how much blood it’s losing—there’s a higher risk of “cardiac collapse” in certain individuals, Dr. Best says.

Another problem: Studies have shown that Black women with symptomatic fibroids wait significantly longer—sometimes years longer—to seek treatment compared to white women.3 One reason for this is many Black people in the US simply can’t afford to see a specialized expert like an ob-gyn or reproductive endocrinologist. “I’ve seen some patients where [the fibroids] have not been addressed, whether it was an insurance issue [or not] being able to have access to medical care to address it,” Dr. Mora says.

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Another sticking point: Lots of people just don’t feel comfortable talking to their providers about what’s going on with their bodies because they often feel dismissed when they try to do so, Dr. Best adds. Black individuals have reported feeling unseen and blatantly ignored when they brought up their fibroid symptoms—particularly the emotional and physical toll of their chronic pain—to a health care provider.

Fostering trust can be especially challenging when racial and gender discrimination manifest at the doctor’s office. Researchers have discovered that some white health care providers (including medical students) believe Black people don’t feel as much pain as white people—and when you’re told your pain isn’t reality, it not only influences the treatment options you receive, but may even start to shape your own perception of what’s going on with your body.

Too many Black people are told that a hysterectomy is the only treatment option when that’s often not the case.

“I hear this a lot [from patients],” Dr. Mora says. “You go in and someone tells you, ‘Well, this is it. The only option you have is a hysterectomy or major surgery, and we’re not talking about anything else.’”

That “anything else” can include medications that help reduce the size of fibroids, ease heavy bleeding, and/or reduce pain; non-invasive procedures that can remove fibroids without cutting you open; and minimally invasive surgeries (like myomectomies) that remove fibroids while keeping your uterus intact.

Despite these options, Black people are at least two times more likely than white folks to have their uterus removed. One reason for this is painfully clear and a reflection of the systemic failures noted above: When your symptoms aren’t taken seriously—or you don’t seek care because you don’t have insurance or access to a doctor nearby—the severity of the fibroids may progress enough to warrant a hysterectomy as the most effective option. When treatment is significantly delayed for reasons outside your control, a less invasive care plan may not be a feasible or successful route to take.

Of course, while a hysterectomy might be the right choice for some individuals, it’s crucial for health care providers to lay out all treatment paths so their patients can make a thoughtful, informed decision that weighs potential benefits and risks, adds Dr. Mora. “Being able to speak to my patients extensively about what all their options are and having a patient-tailored plan is really important,” she says.

While research on Black people and fibroids is limited, you can still find empathetic support.

Passionate advocates are creating more awareness and pushing for solutions—particularly among Black patients and doctors. If you’re affected by fibroids (or believe you are but have yet to get a diagnosis), here are some organizations that can provide support:

  • The White Dress Project: This nonprofit was founded by Tanika Gray Valburn after she had her own fibroids surgically removed. On the website, you’ll find forums and events where you can discuss your experiences and connect with other Black people, as well as various educational materials.
  • The Fibroid Foundation: This org delivers solid fibroid 101 content so you feel prepared to ask the right questions when you head to your next appointment. It also conducts research and shares opportunities to participate in research, too. And its “Workplace Reset” program offers guidance on how to advocate for yourself on the job.

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Above all, the key is to find an ob-gyn you trust, says Dr. Best. This can be an immense task and so much easier said than done, but there are online directories (like these from Planned Parenthood and ACOG) that can narrow your search by location and specialty.

“Speak up about the symptoms that you’re having, so that they can order ultrasounds and come up with a game plan moving forward,” Dr. Best says. Don’t think you have to ride out the pain alone.

Sources:

  1. Fertility and Sterility, Racial Disparities in Uterine Fibroids and Endometriosis: A Systematic Review and Application of Social, Structural, and Political Context
  2. Seminars in Reproductive Medicine, Uterine Fibroids: Burden and Unmet Medical Need
  3. Journal of Women’s Health, The Burden of Uterine Fibroids for African-American Women: Results of a National Survey
  4. International Journal of Medical Sciences, Analysis of MED12 Mutation in Multiple Uterine Leiomyomas in South Korean Patients
  5. Reproductive Sciences, Frequency of MED12 Mutation in Relation to Tumor and Patient’s Clinical Characteristics: a Meta-analysis
  6. American Journal of Epidemiology, Hair Relaxer Use and Risk of Uterine Leiomyomata in African-American Women
  7. Environment International, A Comprehensive Analysis of Racial Disparities in Chemical Biomarker Concentrations in United States Women, 1999–2014
  8. International Journal of Environmental Research and Public Health, Uterine Fibroids and Diet
  9. Caspian Journal of Internal Medicine, The Effect of Vitamin D Supplementation on the Size of Uterine Leiomyoma in Women with Vitamin D Deficiency
  10. American Journal of Epidemiology, Association of Age at Menarche With Increasing Number of Fibroids in a Cohort of Women Who Underwent Standardized Ultrasound Assessment
  11. Women’s Health Issues, The Association between Self-Reported Major Life Events and the Presence of Uterine Fibroids
  12. Stress & Health, The Association Between Chronic Psychological Stress and Uterine Fibroids Risk: A Meta-Analysis of Observational Studies

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