Uterine fibroids that can cause chronic pain and disrupt pregnancy plans disproportionately affect Black women, and research that would help women and girls is underfunded, experts say.
The noncancerous tumors can be as small as a pea to larger than a football. More than 80% of Black women will have fibroids by age 50, the National Institutes of Health says, compared to about 70% of white women. Black women with fibroids are twice as likely as white women to have hysterectomies as a treatment.
Black women are diagnosed with fibroids three times as often as white women, and develop them earlier in life, according to University of Michigan research. Black women are more likely to have larger fibroids, a larger number of fibroids and more severe symptoms, the research found.
“We shouldn't have to live in this pain,” said Tanesha Willis, who has undergone multiple fibroid surgeries.
Willis’ symptoms were severe.
“I experienced really, really bad pelvic pain and wake-up-to-a-crime-scene hemorrhaging, and I knew it was abnormal, to the point where I was bleeding 21 days,” she said.
Tanika Gray Valbrun began to suffer symptoms from fibroids when she was about 14 years old. She had extremely heavy periods, her abdomen protruded, and she constantly needed to use the bathroom because her fibroids sat on her bladder.
“I can't be the only one going through this,” she thought after having 27 fibroids removed.
The mental toll of having fibroids adds to the physical pain. Many patients wonder if they’ll be able to get pregnant or carry a baby to term. Many are advised to have hysterectomies.
“When I got married in 2012, I decided that I had to do something about my fibroids. So I went and saw a doctor. And the first thing that he told me was that my uterus was way too compromised and I would need to have a hysterectomy,” Valbrun said.
Sateria Venable also was told she needed a hysterectomy, which frustrated her.
“I was told to have a hysterectomy at 26, knowing nothing of my background, not really delving into my needs as a patient, my goals as a patient. That's a problem,” she said.
Valbrun went on to found The White Dress Project, a group that aims to raises awareness of fibroids. Its name evokes an emblem of hope for women and girls who often bleed heavily.
Venable also formed a group, The Fibroid Foundation.
Research on why Black women are hit harder by fibroids is ongoing. Potential risk factors include lower vitamin D levels, diet, stress and starting one’s period younger.
“We have some theories of different things that may be contributing to this, but the absolute cause is still unknown,” said Dr. James Segars, director of the reproductive services division at Johns Hopkins University School of Medicine.
Health care disparities for Black people likely play a role, said Dr. Felicia Hamilton, an OB-GYN at Medstar Washington Hospital Center. These are related to “lack of income, education [and] job participation,” she said.
Early detection is key, said Dr. Erica Davenport, an OB-GYN at Howard University Hospital. She said she has had a number of patients in their 30s who were advised to get hysterectomies.
Dr. Jeanine Staples, an OB-GYN at Sibley Memorial Hospital, advised education and prevention.
“I think it's really important for all women to feel empowered to ask questions at the doctor's office and just really being educated about it. So, no, it's not normal to have a period that lasts for 12 days,” she said.
Research on fibroids needs to be better funded, said Segars, of Johns Hopkins.
“If we had a better treatment for fibroids, I think the quality of life of many, many millions of women — particularly African-American women — would be greatly improved,” he said.
Lawmakers plan to reintroduce a fibroid research bill this year. The bill would allow $30 million in NIH research funding for each of five years. It would be “groundbreaking,” said Venable, the founder of The Fibroid Foundation.
“We so desperately need this,” she said.
In addition to calling for more federal funding, Valbrun the White Dress Project founder, asked for Black women to get involved.
“We have to show up for clinical trials. And obviously, historically, we have had a lot of pain points around that. We could talk about Henrietta Lacks. We could talk about Tuskegee. But we have to also get to the point where we're educated and we're informed about what's happening, so that we can show up for these things,” she said. “Because if only, let's say, white women are showing up, then that's where the data lies. I want to be a part of the studies that can improve the health and well being of Black women around this particular chronic illness.”