By Hillary Crosley Coker
As Black women age, sometimes it really feels like we’re getting jumped by racism. Don’t get me wrong, I love being Black and I’m embracing aging. But we experience the worst of so many health issues, ones that seem to take us by surprise, and fibroids are up there as the biggest attacker.
The uterus is made up of three different layers: the endometrium, the serosa, and the myometrium, the muscle where fibroids, a type of noncancerous tumor, originate. It’s unclear why they grow there, but grow there they do: Data from 2017 found that up to 90% of Black women and 70% of white women will experience fibroids by age 50. According to the American College of Obstetrics and Gynecology (ACOG), Black women are not only more likely to develop fibroids, but our masses show up earlier, in bigger sizes, and in larger numbers. Often, they’re discovered thanks to symptoms like heavy and lengthy painful periods, or weight gain, a misdiagnosis for something else like endometriosis, appendicitis, a UTI, or during a prenatal ultrasound. (In extreme cases, fibroids can grow to the size of a watermelon.) But what can we do about this pernicious and all-too-common health issue? Talk to one another and our doctors, and if they don’t listen, fire them and find someone else.
Maya Francis, 38, was doubled over in pain and could barely stand up; she thought she had an appendix rupture, so she went to a nearby emergency room. There, an intake nurse told her she had appendicitis until a doctor looked at her ultrasound and realized she had a cyst “the size of a baby’s head” which was filled with fibroids, with even more fibroids growing out of the sides.
“Oh cool, there’s a kitchen junk drawer in my pelvis,” says Francis, who had surgery weeks later. “When I spoke to the doctor who did my procedure, I cried because I was just really grateful that she listened to me. What if it had been more serious?”
Her emergency room visit was one week after her last OBGYN check-up, where Francis complained of frequent urination, twinges of pain, and feeling like she was carrying a bag of water around her waist. That doctor dismissed every single red flag.
If these symptoms sound familiar, there are myriad methods your doctor or midwife can use to see what may be hurting you, starting with a transvaginal ultrasound, a hysteroscopy (a thin device inserted into the uterus that can be used to take a tissue sample), a hysterosalpingography (an x-ray, so it’s non-invasive), a sonohysterography (another type of imaging procedure that uses fluid injected into your cervix to see what doesn’t belong), or a laparoscopy (a thin device that’s inserted into your abdomen through a small incision, which can see fibroids on the outside of your uterus). Notice how telling you it’s all in your head and sending you on your way does not factor on this list.
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A transvaginal ultrasound that was part of Dominique Maldonado’s annual gynecologist appointment surprised her with two rice grain-sized fibroids tucked into her uterine lining.
“I think everyone should get an ultrasound every year, just in case,” says Maldonado, 37, after her ordeal with fibroids. While ACOG’s guidelines suggest annual pelvic exams are only necessary when experiencing gynecologic symptoms (and the typical exam doesn’t include ultrasound), Dr. Whitehead recommends requesting one if you are concerned. In Maldonado’s case, she hadn’t experienced any symptoms before hers were detected.
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“The whole thing was really traumatizing,” she says, exasperated. “People have fibroids, that’s not that crazy. Why is this so dramatic?”
Her doctor flagged the fibroids and began to monitor them because, at the time, they were benign but could grow. Indeed, Maldonado’s period became irregular and heavy enough to bleed through her clothes, despite an increase in her birth control’s estrogen dose to shrink the fibroids. Decisions like when to have sex or wearing certain colors were wrapped around when her period did or didn’t randomly terrorize her, Maldonado shares, and her anxiety skyrocketed, an experience that’s not unique to her. One 2022 study found that women with uterine fibroids experience higher rates of anxiety, depression, and self-directed harm than those without fibroids, a mental health impact that’s consistent with other conditions causing chronic pain. When her period lasted three weeks, Maldonado finally scheduled surgery, and a lemon-sized fibroid was removed without the need for an incision.
“The whole thing was really traumatizing,” she says, exasperated. “People have fibroids, that’s not that crazy. Why is this so dramatic?”
The drama extends beyond the symptoms and diagnosis and into how you decide to treat your fibroids. Many doctors suggest hysterectomy for Black women but there are other options, like hormone therapy and different surgical procedures, as Shannon Bouldin, 43, learned.
When Shannon was in college, her mother had had a hysterectomy, but as a 20-something, she admits she wasn’t really paying attention. Then, in her late thirties, Shannon began to have heavy periods where she endured breakthrough bleeding and incredible pain. She tried increasing her estrogen and progesterone intake, and the medicine, Lupron, that she says tricked her body into thinking she was in menopause. Nothing worked and then one day, she reached a low point. During a big meeting at work, she bled through her pad, a tampon, and clothes despite changing her sanitary garments just before the meeting began. She sat glued to her seat, frozen with fear.
“I could feel it and I’m like, holy shit,” she recalls. “I’m an engineer in this room with all these goddamn men, they’re still talking and I’m like, How do I end these conversations? Do I tell them I’m bleeding?”
Bouldin and her doctor discussed a hysterectomy, because she is in her 40s and wasn’t planning on children. But not planning for kids is not the same as never having kids, and she felt that decision “needed to come with a lot of therapy.” Not to mention the procedure’s dark history, wherein hysterectomies were performed on Black women, like civil rights activist Fannie Lou Hamer, without their consent and without less invasive treatments being offered first. As recently as 2020, a nurse blew the whistle on a California State Prison for that exact practice on ICE detainees. Instead, at the urging of a friend who happens to be an OBGYN, Bouldin talked to a number of different doctors, who ultimately suggested robotic laparoscopic surgery to remove the fibroids (and leave her uterus intact). After finding a surgeon who’d operate on her the way she requested, Bouldin says she healed in two to three days and has a new lease on life without anxiety around extended and heavy periods. She wants more women to talk about their periods with each other so we know what’s normal.
“Some people don’t recognize the bleeding symptoms,” says Dr. Anticia Whitehead, an OBGYN at Downtown Women in New York City. “They say, ‘My family has heavy periods, and we bleed for 12 days.’ Well, that’s not normal.”
Dr. Whitehead, who’s in her mid 40s, discovered her own fibroids during a transvaginal screening for a classmate’s graduate research during medical school. She was shocked, but they didn’t affect her period or stop her from conceiving her daughter. During pregnancy, they stabilized, and then got smaller during breastfeeding. Now that she’s perimenopausal, they continue to shrink. Some women discover their fibroids during pregnancy and others develop them during pregnancy, usually in the first trimester due to increased estrogen, according to WebMD. Those with fibroids during pregnancy can suffer miscarriages or have to have cesarean sections due to their fibroids’ size or location blocking the birth canal.
Akilah Johnson, 43, comes from a long line of fibroid sufferers. Her mother struggled while pregnant with her, making her pregnancy miserable. Akilah suffered such debilitating periods that she began birth control at 14 to mitigate “radiating” menstrual pain and later fibroids. Now she’s a newlywed who wants to have children and has stopped birth control, which previously kept her period pain and her recurring fibroids at bay. Because of her health history, she and her husband are looking at in vitro fertilization, which her insurance is making her jump through hoops to cover.
“It’s statistically proven that Black women are more prone to these health problems, but nobody cares enough to actually do something about it,” Akilah says. “I could spend another year trying to find a physician that is capable and educated on fibroids, or I could shoot my shot before I’m excluded by insurance, which is already trying to bar me because of my age and ovarian reserve numbers,” she says.
Some in politics are aware of the issue. Vice President Kamala Harris introduced a bill to fund uterine fibroid research in 2020, but it hasn’t gone further than being introduced. So what red flags should we be aware of, since it feels like we’re on our own here?
Dr. Whitehead says that women need to look out for changes in their bleeding pattern, increased urination or defecation, which can also show up as incontinence or constipation, uncomfortable sex, and recurrent miscarriages.
“Being in our 30s and 40s, we have to pay attention to our cycles, convey our concerns, and advocate for ourselves,” she says. “A lot of doctors will just say, ‘Oh, you’re getting older, cycles change.’ That’s true, but I think you also have to think about the other things that may come up and we as Black women are predisposed to fibroids. It can’t hurt just to get more information.”
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