BALTIMORE — Doctors don't yet understand the reason why Black women are 2-to-3 times more likely than white women to suffer from uterine fibroids, benign growths on the uterus.
However, the medical community is aware of the disparity, which should give them advantage in the diagnostic process.
That wasn't the case for Tyleese Cooper who suffered debilitating symptoms for a year before she was accurately diagnosed.
Tyleese's Story
Back in November 2019, Tyleese was at a conference where she wasn't feeling well, she made a mental note to go to the doctor when she got home.
Her doctor sent her to her gynecologist, after the winter holiday season ended and she describes her symptoms to him.
"Fatigue, I'm dizzy, shortness of breath, heavy bleeding," she recalls. "And I didn't understand why."
The OBGYN responds by asking her about her diet and tells Tyleese they're going to keep an eye on this.
She was also told "[she] could possibly be pre-menopausal."
"I should have [had] blood work done," she says. "Given what I was describing and what I was presenting... I felt like it was dismissed."
At her regular OB check up, with the same doctor, she remembers having an exam, but again, no blood work. She was told, "nothing presented as out of the ordinary."
"He was pretty resolved that [I] was pre-menopausal, which even blood work would have been able to determine that as well," Tyleese says.
Tyleese feels her symptoms aren't being taken seriously and starts to "very specifically" document each of her symptoms, recording the time and how long they last.
In late summer 2020, she has yet another appointment with her regular OBGYN provider. She recalls how she felt coming out of that meeting "I wind up leaving that appointment. In the parking lot, making an appointment with my primary care physician. I'm feeling like I'm not getting anywhere with this particular healthcare provider."
She makes an appointment with her primary care doctor for November of 2020, almost a year after her symptoms first began.
This full yearly physical includes blood work.
Four hours after her appointment, she gets a call from her PCP telling her she needs to go to the Emergency Room.
"It was really scary," she remembers.
The Diagnosis
Tyleese's hemoglobin levels were so low, her level was equivalent to that of a gunshot victim.
Normal hemoglobin range for an adult woman is between 12 and 15. Her level was a 4.5, she was severely anemic.
Tyleese Cooper had 8 uterine fibroids that had been feeding on her blood supply and depriving her organs of oxygen.
She needed a blood transfusion immediately.
Tyleese reached out to her best friend, a physician and she was able to get a second and third opinion by the end of the night.
"I did have, luckily, friends who were subject matter experts," she tells WMAR-2 News.
The blood transfusion was able to address the immediate symptoms but Tyleese was looking for more of a resolution.
"I needed something to be done to figure out why my body was doing what it was doing." she says. "I knew that there was a course of action that could be taken in order to relieve, to address what was systemically happening."
For Tyleese, that course of action was a hysterectomy.
"In my case, I felt pretty confident that was the correct course of action." she says.
Uterine Fibroids diagnosis and treatment
Dr. Suleika Michel, an OBGYN who practices at Anne Arundel Medical Center in Annapolis, sat down with WMAR-2 News to talk about the diagnosis and treatment of uterine fibroids, and what she has seen.
"6% of women between the age of 18 and 30 have been diagnosed with fibroids," she says. "But by the age of 35, that number increases to 60%."
While a majority of women may be diagnosed with fibroids, not everyone has symptoms as severe as Tyleese.
"The effects of fibroids vary, and they vary based on a number of things," says Dr. Michel. "Based on, realistically, the number of fibroids, the size of fibroids and where they're located."
Some women may have no symptoms or very mild symptoms and not even realize they have fibroids growing.
She adds, "It's not uncommon for patients, who are not having access to consistent care and getting their pelvic exams and assessments on a regular basis, sometimes those things aren't caught until they really need to have some type of more invasive surgery, not necessarily a hysterectomy."
Dr. Michel explains that there are a range of treatment options for uterine fibroids but later diagnosis can limit the "options for management."
"A hysterectomy really needs to be a last resort," she says. "With all of the technology and advancements that we have made surgically, and through medications there are definitely a lot more options that we can do."
And Black women may find the options presented to them, even more limited.
"Black women are at least twice as likely as white women to have their uterus removed in the form of a hysterectomy," says Dr. Michel. "Particularly to treat fibroids."
Racial Health Disparity
Several studies have shown that Black women are more likely to have uterine fibroids — but none have given a clear reason why.
"Unfortunately, there haven't been real definitive answers that are being found," says Dr. Michel.
This echoes what Johns Hopkins Medicine says on its website.
"Black women are more likely to develop fibroids than other women, they are diagnosed at younger ages and they more often require treatment. It is not clearly understood why fibroids disproportionately affect Black women."
The CDC, NIH, and the Mayo Clinic all say that 'being Black' is a risk factor for uterine fibroids.
However, the American Medical Association last year decided to adopt new policies that would encourage limiting the listing of race as a risk factor for particular diseases, instead "recognizing race as a social construct — rather than a biological construct."
The Association instead is "recommending that clinicians and researchers focus on genetics and biology, the experience of racism and social determinants of health when describing risk factors for disease."
And researchers are working to understand this across the field of medicine.
The American Cancer Society, for example, is working to secure funding for a study to understand how housing discrimination impacts cancer diagnoses.