On her honeymoon, Kia Edwards doubled over with what she thought was abdominal pain. But Pepto Bismol didn’t relieve it. Nothing did. She found it hard to eat and move.
It took months of near-constant pain for Edwards to receive a diagnosis of uterine fibroids, and she likely had them for much longer. She always had very painful, heavy periods — a common symptom — but she said the subject was taboo.
“In the Black community, we don’t talk about pain,” Edwards said, “we don’t talk about sickness, we don’t talk about things that we consider to be normal.”
Edwards called uterine fibroids “a silent fight” in her community. It’s one factor that might contribute to a painful statistic: Black women are diagnosed three times as often as white women with these typically benign tumors, and with more severe symptoms.
Though the research uses the term "women," uterine fibroids can affect anyone with a uterus, including transgender men and nonbinary and intersex people.
Edwards said there’s a lack of trust between Black people and physicians, caused by a long history of medical experimentation and sterilization. And today, research shows that physicians tend to take Black people’s pain less seriously. Edwards believes that might delay diagnosis.
“Diminishing our pain means not treating us appropriately in regards to fibroids,” Edwards said. “Limiting your next step of evaluating a patient because you think that we’re lazy or we are just complaining because we don’t want to go to school, don’t want to work.”
By the time uterine fibroids are caught in Black patients, they tend to be more advanced. Black patients are twice as likely as white patients to have their uterus removed instead of less invasive treatment options.
Edwards said she had to do her own research on which treatment would leave her with the greatest chance of still being able to conceive a child. She opted for a myomectomy, removing the fibroids but leaving her uterus in place.
Evidence of her outcome hangs on her walls: Pictures of her “miracle babies,” 7-year-old Aseem and 4-year-old Ali. Aseem means “champion” — referring to her successfully conquering the uterine fibroids.
Edwards said she’s breaking the silence not just for herself, but for people with less means to advocate for their own uterine health, especially those in foster care and prison.
She believes she was lucky. She had good insurance. She could take medical leave from her job. She was able to educate and advocate for herself in a health care setting.
And the OB-GYN she received the diagnosis from was Assemblymember Dr. Akilah Weber, daughter of Secretary of State Shirley Weber, who instituted July as uterine fibroids awareness month in California. All three women are alumnae of the Delta Sigma Theta Sorority, which pushed for the awareness month’s creation.
Black OB-GYNs can help overcome the trust barrier between Black patients and physicians according to Dr. Latisa Carson.
Carson is the only female African American board certified obstetrician OB-GYN in solo private practice in San Diego County. She said patients drive from as far as Del Mar and Coronado to visit her office in Chula Vista.
Carson attributed the racial disparities in uterine fibroids to disparities in health care access, genetics and heightened exposure to environmental toxins.
Uterine fibroids are a financial burden, both in terms of direct medical costs and lost work time.
“A lot of times people, because of their economic situation, they’re unable to take time off,” Carson said, “even to come to a doctor’s appointment. And definitely not to get surgery and be off work for two-to-eight weeks.”
Carson recommended people see their physician if they are menstruating through their clothes and bedding, wearing overnight pads in the daytime, or have extreme pain that isn’t relieved by over-the-counter medication.
Like Edwards, she thinks breaking the silence is key to eliminating the disparity for Black patients.
“It matters because human suffering matters and women matter,” Carson said. “I think it’s really important for everyone to talk about what’s happening.”
