Fibroids: Why the System Fails Black Women
by Allison Danish, MPH
From quality of life impact to unethical insurance coverage practices to racism, fibroids don’t receive nearly the attention they deserve.
We know fibroids are incredibly common among all women*, but even more so among Black women.
80% of Black women develop fibroids by the time they are 55 compared to 70% of white women of the same age.
Black women are also more likely to develop fibroids at younger ages, have larger and more numerous fibroids, and experience more symptoms.
Why Black women experience a disproportionate fibroid burden is a complicated question with a lot of potential answers. Research is currently limited, but it may be due to risk factors like low vitamin D and obesity (which are experienced at higher rates by African Americans), genetic factors, higher rates of exposure to endocrine-disrupting chemicals like phthalates and BPA, and racial discrimination.
And while there are a wide range of treatments available for fibroids, unfortunately, not all women* have the same options and access to care.
Before we go any further, let's take a quick pause to hash out some definitions (because medicine can be wordy and confusing):
- Hysterectomy: an operation where the uterus (and possibly the cervix) is removed, and can either be a minimally invasive procedure or an open procedure.
- Open hysterectomy: a traditional hysterectomy in which the uterus is taken out via a large incision in the abdomen.
- Minimally invasive hysterectomy: a laproscopic hysterectomy, meaning the uterus is removed through one or several small incisions with the help of modern day technology. A morcellator may also be involved because uteruses are big and sometimes need to be taken out in smaller parts.
- Myomectomy: A surgical procedure where individual fibroids are removed.
Fibroids in Black women
Black women* are over 2 times more likely to undergo a hysterectomy for their fibroids than white women*, but are less likely to receive a hysterectomy that is minimally invasive (laparoscopic). This means Black women* are more likely to undergo a procedure that eliminates the possibility of developing more fibroids, but also eliminates the possibility of becoming pregnant. Because they are also less likely to receive a minimally invasive surgery, this means Black women* more often undergo procedures with greater risks and longer recovery times.
There are a number of factors—structural, historical, and biological—that contribute to these health disparities.
Structural
Health care access differs geographically. In more rural areas, women have less access to both information about their bodies and their conditions as well as less access to providers who can present a wide range of treatment options.
“You can think of [access to providers] like a menu. Some women have two options, while some women get a menu that has appetizers and entrees and dessert,”
says Jessica Shepherd, MD, an OB/GYN, a well-known and passionate women’s health expert, minimally invasive gynecologic surgeon, and founder of Her Viewpoint.
Providers who are trained in techniques like minimally invasive gynecologic surgery are primarily crowded around cities. If women don’t have access to those cities, they won’t have access to those treatments. If the only provider available is one who has primarily been trained in obstetrics and completed a fellowship in minimally invasive gynecology and doesn’t feel comfortable performing a procedure, they may present an open hysterectomy as the only option.
Insurance coverage also varies with geography. There are a number of insurance companies that will cover myomectomies and minimally invasive procedures in some states, but not in others. The areas where these procedures are not covered by certain companies are places like the Delta states where there are more Black women and therefore higher demand for fibroid treatment.
“If I were to speak to an executive from that insurance company, I would say ‘so basically what you’re saying is one woman’s health is more important than another’s,’” says Dr. Shepherd.
Implicit bias, unconscious attitudes and stereotypes, in providers may also contribute to Black women’s ability to receive the care they deserve.
Uchenna Ossai, DPT, a pelvic floor physical therapist, sexual educator, counselor, and founder of YouSeeLogic says, “We’re seeing a lot of research on implicit bias among healthcare providers and how that can impact a person’s experience and the access to care, particularly when pain is a primary driver.”
Historical
In addition to treatment, care-seeking looks different for Black women than white women.
“With the research I know, healthcare-seeking behaviors among African American women are just globally decreased for reasons of mistrust in the healthcare system, which we know is not unfounded. From the Tuskegee Airmen Trials to Henrietta Lacks to what we’ve done to Native American women particularly in Canada and basically North America or the Puerto Rican birth control trials…” says Dr. Ossai.
With a history of violence and subterfuge in western medicine, it follows that people of color, particularly women of color, would not trust the healthcare system and therefore wait longer to seek treatment. Unfortunately, when fibroids are left to their own devices without any medical intervention, they can grow larger and grow in number.
Which takes us to the biological factors.
Biology & Medical Limitations
Black women* are more likely to grow fibroids, and those fibroids are more likely to be larger and come with more fibroid friends. Because of current equipment, techniques, and physician comfort/training, the larger the uterus (the more and the bigger the fibroids), the less likely someone is to receive a minimally invasive hysterectomy.
“That’s another place where specialized training plays a role. [A surgeon who operates on] a lot of big uteruses in a minimally invasive fashion is more likely to be comfortable and successful offering that procedure… If somebody is offered an open hysterectomy, that’s one setting where I think it’s certainly reasonable to ask for a second opinion,” recommends Elena Wagner, MD, a minimally invasive gynecologic surgeon from Virginia Mason Hospital and Seattle Medical Center.
Why does it matter?
When symptomatic, fibroids can pose a significant threat to quality of life, interfering with a person’s ability to work and engage in relationships.
“Women who have abnormal uterine bleeding, their quality of life is often worse than people with diabetes and high blood pressure. And people tend to really underestimate that,” says Dr. Wagner.
Emotional and psychological wellbeing, including lower perceptions of self worth, are common in women* with fibroids. In the workplace, women* with fibroids more often report lower effectiveness and more missed days of work because of their symptoms—24% even reported that their symptoms prevented them from reaching their career potential.
There’s also a huge economic burden associated with fibroids—both for patients and the health care system.
“The annual cost of uterine fibroids has been estimated to total 34.4 billion USD, which is more than breast cancer, colon cancer, or ovarian cancer.”
Plus, fibroids disproportionately affect African American women*, a population whose reproductive and sexual health is historically and often currently at odds with the medical system.
If you or a friend or family member have fibroids and are experiencing symptoms, it’s important to know that it’s not your fault that this is happening, and you have options.
“Give yourself some grace. People who live with fibroids, who live with chronic pain issues—it’s the concept of giving yourself grace and the freedom to explore the fact that your hurt is going to be different from the next person’s hurt, and that’s okay.” -Dr. Uchenna Ossai
Hysterectomies and infertility are certainly not inevitable—and, through research and advocacy, we can make fibroids a higher priority for all. Because everyone deserves the right to good care.
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*Not everyone who is a woman has a uterus, ovaries, fallopian tubes, a vulva, or a vagina. Not everyone who has a uterus, ovaries, fallopian tubes, a vulva, or a vagina is a woman.