What No One Tells Black Women About Fibroids
Our tumors are usually larger and we’re more likely to be hospitalized. This is a crisis.
I was lying in a white-sheeted hotel bed in Chicago when I realized my fibroids had returned. It had been nearly three years since I’d first experienced these symptoms, but they were unmistakable: an incredibly heavy menstrual cycle that had lasted longer than seven days? Check. Passing clots of blood through my urine? Check. A throbbing in my lower back that wouldn’t subside? Check. Three years after having a robotic myomectomy — an outpatient surgery that removes fibroids from the uterine wall while also preserving fertility — I knew what to expect. Or so I thought.
It would take more than 13 months to be approved for a second myomectomy to remove five new fibroids. In that time, I underwent a battery of diagnostic tests: cervical biopsies, vaginal ultrasounds, two cycles of a medication that would later put me in heart failure, and a gynecologist who continually tried to persuade me to have an IUD inserted instead of removing the fibroids.
By the time I had a second myomectomy last year, I’d shelled out more than $1,500 for co-pays, tests, and medications, developed an iron deficiency, and bled through more panties than I could count. I’d also reached my emotional and mental limits; beyond the search for relief — to once again feel at home in and in control of my body — I was seeking a restoration of dignity. Moving through the world with a purse full of extra pairs of panties and a half-pack of menstrual pads felt like a deep-seated secret that was impossible to share with others. Though most fibroids are benign, the symptoms felt like a burden that would never be lifted. And in Black America, where an estimated 80% of Black people with wombs will develop fibroids and between 20% and 50% of those people will experience symptoms, there is no time to hide behind shame. We’re in a crisis.
A 2003 study published in the American Journal of Obstetrics and Gynecology found that 70% of White people with wombs under the age of 50 will develop fibroids; as mentioned above, 80% of Black people with wombs will develop them; and between 20% and 50% of people who have fibroids experience symptoms. “Because fibroids are, for most women, not a life-threatening condition, it doesn’t have the urgency that many other conditions that affect people do,” says Nancy C. Lee, MD, a Senior Policy Advisor for the advocacy organization, CARE About Fibroids. “Fibroids are just something you put up with, but I have heard some troublesome stories from women about what they’ve had to go through. Sure, fibroids are not life-threatening, but it really changes lives.”
“Black people develop fibroids at earlier ages than White people, and our tumors are often larger and more intrusive. We’re also more likely to have our fibroids surgically removed… and we have higher rates of hospitalizations due to fibroids.”
In 2016, Cora Harrington discovered she had fibroids after experiencing pain in her lower abdomen and having a doctor refer her for an ultrasound. Harrington’s doctor told her she had “nothing to worry about” and only recommended surgery as an option after she prodded about shrinking the size of the tumors. Their misguided medical advice resulted in a number of different complications for Harrington. Severe menstrual bleeding caused her to become anemic and her fibroids became so large that it gave her the appearance of being pregnant. She was bleeding so heavily, in fact, that she became “effectively housebound,” relying on a combination of overnight menstrual pads and heavy flow tampons to prevent the blood from leaking through. “I remember feeling so weak and depleted, that sometimes my entire day would revolve around drinking Powerade to keep my fluids up, taking iron pills, and eating liver. Lots of liver,” she says.
Black people develop fibroids at earlier ages than White people, and our tumors are often larger and more intrusive. We’re also more likely to have our fibroids surgically removed, through myomectomies or other procedures, and we have higher rates of hospitalizations due to fibroids. And yet, all of this remains speculative because there’s still so little research about fibroids outside of a five-year project shepherded by Duke University, the Patient-Centered Outcomes Research Institute, and the Agency for Healthcare Research and Quality, that aims to analyze the effectiveness of available treatments. Currently, we have a medical system, including insurance companies and doctors, that don’t have a clear-cut approach for treating them.
Ultimately, it was Harrington’s diagnosis of infertility, caused by fibroids, that persuaded her doctors to medically intervene in 2019. “Quite abruptly — literally overnight — everything related to treating my infertility, up to and including a myomectomy, was covered by my husband’s insurance,” Harrington says. “The complete and total about-face — not because I was in pain or because my quality of life was suffering, but because I couldn’t get pregnant — was both startling and infuriating. It was such a clear and obvious and undeniable reminder that, in our society, a woman’s pain — and, especially, a Black woman’s pain — is viewed as inconsequential.”
As Lee points out, menopause will typically shrink the size of fibroids, making them asymptomatic, but for others, there are a number of different treatment options available, depending on age, interest in childbearing, and placement of the fibroid. For some people, birth control pills or an IUD can manage the menstrual bleeding caused by fibroids, making it possible to avoid surgery; other people are candidates for endometrial ablation or uterine artery embolization, minor surgeries that remove the lining of the uterus or restrict the blood flow to the uterus, respectively. Harrington’s surgeon opted for an open myomectomy (or abdominal myomectomy), a major surgery that removes fibroids through an incision across the lower abdomen, to remove her 21 fibroids. But there’s one treatment option that’s often presented as the sole option: a hysterectomy.
Fibroids are the primary reason that hysterectomies are performed on people in the United States and Black people are between two and three times more likely to have hysterectomies to treat fibroids. While Lee says that a hysterectomy might be the best treatment option for those who have finished their childbearing, she also notes that hysterectomies shouldn’t be regarded as the best or only treatment available. “What we’ve seen is that women don’t know about their options and more importantly sometimes, their health care provider doesn’t tell them about their options,” she says.
For Black women in particular a lack of knowledge about the development of fibroids and how to treat them leaves them at an impasse, especially for those of us without access to health care or without the ability to get medical advice from multiple doctors, including specialists. This leaves many of us with limited options and leads many people, even those with asymptomatic fibroids, from seeking care. But the first and most important step is raising awareness, so that the shame that kept me silent for so long can be disrupted. A number of advocacy organizations, including CARE About Fibroids, Healthy Women, and the White Dress Project focus on increasing awareness about fibroids, while a growing number of people online, myself included, are using their platforms to encourage people with symptomatic fibroids to seek care. Harrington, who runs the Lingerie Addict, has been very open online about her myomectomy because she wants people to have more support as they navigate their own fibroid journeys.
“Fibroids are the primary reason that hysterectomies are performed on people in the United States and Black people are between two and three times more likely to have hysterectomies to treat fibroids. ”
“I felt foolish honestly, like I should have advocated more for myself even though all the research I did supported what my doctors said,” she says, “… I wrote the kind of article and shared the kind of information I wish I’d had access to during that time.”
Lee says that advocates like Harrington are essential to combatting this growing crisis and pushing for more comprehensive research that will allow us all to make more informed decisions about our health. “The time now that women just defer to their doctors is over,” she says. “We have to educate ourselves and be in charge of our own health… We need to look upon our physician like we look upon our electrician or our plumber; these are people who have specific knowledge and technical abilities that we don’t have. We need them, but we’re in charge.”