Doctors Are Failing To Diagnose Black Women With PCOS
“I could barely stand, it was like my whole body had shut down”, said 22-year-old Courtney Boateng. “I had to change pads every 45 minutes, I was bleeding through my clothes at home, and I could feel all these massive clots coming out of me. I could have filled buckets [with my blood]. It was the worst period of my life.” This was the traumatic menstrual experience that ended up lasting for over two weeks and prompted Boateng to seek help with a medical professional. At the emergency appointment, the doctor told her that her symptoms were just related to her stress and her weight and sent her home with ibuprofen. It took her five gynecologist appointments over nine months for her to finally be referred for an ultrasound and ultimately diagnosed with PCOS. This experience is a common reality many Black women have in the healthcare system.
Polycystic Ovarian Syndrome, commonly known as PCOS, is an endocrine disorder that affects from either 2% to 20% of women aged 18 to 44–depending on how one defines the criteria. PCOS is a set of symptoms caused by an elevated level of androgens (male hormones like testosterone) in a woman’s body that cause an abnormal amount of cysts or sacs on a woman’s ovaries. These hormones cause everything from prolonged menstruation cycles to no menstruation, to premature balding, to the appearance of hair in unusual places on a woman’s body, to excessive and sudden weight gain. It also often comes with painful, heavy-flow periods that can be extremely disruptive to a woman’s everyday life.
Not only that, but PCOS is the leading cause of infertility among women, causing over 75% of cases having to do with ovulation disruption.
An estimated 50% of annual PCOS cases go undiagnosed in the U.S., with many placing the blame on the ignorance of primary care physicians.
The reason that this disorder is so under- and misdiagnosed by doctors is that, often, many of PCOS’s symptoms (like abnormal periods, weight gain, and mood fluctuations) are mistaken for symptoms of stress, puberty, or sometimes, just chalked up to a bad diet. And perhaps above all, PCOS is a disorder that occurs only in women, a class of people that doctors notoriously don’t take as seriously.
Many patients also suspect that PCOS isn’t taken as seriously by doctors because it’s most likely to occur in overweight patients, with up to 80% of women suffering from PCOS also falling to the “obese” category. However, obesity is a symptom of PCOS, not a cause; the elevated levels of androgen hormones in a woman’s body make her blood sugar more resistant to insulin, making her more prone to weight gain. This also makes a woman with PCOS more prone to coming down with Type 2 Diabetes–a common condition associated with the disorder.
Many people believe that doctors’ responses to women’s health complaints are rooted in internalized, out-dated beliefs about “hysterical women”, a historical catchall mental disorder diagnosis that women were commonly diagnosed with starting in the 17th century. Still, these outdated beliefs about the fragility of female mental health persist today, with women being more likely to be prescribed antidepressants and anti-anxiety medications than men are (as opposed to pain medication or further testing) when they visit the doctor with pain.
To make matters worse, black patients are often (erroneously) thought by doctors to be more tolerant to pain than their white peers, as is exemplified in a 2012 study that found that black patients were 22% less likely than white patients to be prescribed pain medication by their doctors.
This theory about doctors’ beliefs was further proven when a study was conducted on 200 white medical students and residents. The students were quizzed on multiple old wives’ tales about different races, like the old one: “black people have ‘thicker skin’ than white people”. Half of the medical students thought one or more of the false statements were true, which gives weight to the theory that doctors don’t take black pain as seriously.
The one-two punch of being a woman and being black makes the doctor’s office an especially stressful place for an Afro-Latina to be.
This flippancy towards women’s health problems is exasperated in health care professionals’ treatment of women of color. PCOS is no more common in white women than black women, but black women are vastly less likely to be accurately diagnosed and treated for the disorder (as with many other health disorders).
So, unfortunately, like many health issues, black women are less likely to be taken seriously by doctors when it comes to PCOS. This is a particularly frustrating reality seeing as PCOS is treatable, with symptoms greatly improving through largely inexpensive lifestyle fixes such as adding diet and exercise programs into their daily regimens or simply taking hormonal birth control pills.
But as more and more studies bring to light the widespread reality of implicit bias among doctors, many black women are becoming frustrated at how they seem to be the ones getting the brunt of their doctors’ indifference. Although ovarian cysts can be detected via ultrasound, it’s often difficult for black women to be referred to ultrasounds by their doctors who aren’t taking their pain seriously.
Many experts blame doctors’ failure of black women on their implicit bias.
Implicit bias is defined by PubMed as “a negative evaluation of a person on the basis of irrelevant characteristics such as race or gender” caused by “ associations outside conscious awareness”. That means that some doctors may misdiagnose or under-diagnosed patients based on racist or sexist conclusions that they’re not even aware they’re making.
This problem of implicit bias among the medical community is exasperated by the lack of diversity among doctors, with only 5% being Latino (regardless of the fact that Latinos are the fastest growing ethnic group in the U.S.), and only 4% of doctors in the U.S. being black.
Linda Blount, president of the Black Women’s Health Imperative, is very matter-of-fact when describing the realities that implicit bias has at the doctor’s office: “We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” she says. “Their bias absolutely makes its way into the exam room.”
Somewhat surprisingly, this bias transcends social and economic factors and has little to do with class. “When you look at inequalities in healthcare, you see a lot of studies tying the problems to race and poverty, but there’s not a lot about educated, insured black women who are not poor”, says Bette Parks Sacks, Assistant Professor of Social Welfare at UC BerkeleySacks. “Yet infant mortality rates for black women with a college degree are higher than those for white women with just a high school education.”
The under-diagnosis of PCOS in black women is just another example of the way the American healthcare system is letting down black women.
Because of the structural racism within the healthcare community, black women are often told that their very real symptoms are “all in their heads” or simply stress-related.
The most dangerous facet of this pattern is that once physicians decide that a patient’s symptoms are simply stress-related, they stop searching for another diagnosis. This leaves many Afro-Latinas struggling with their PCOS alone, believing that their long and intense periods, hair loss, weight gain, insulin resistance, and often, mood-related disorders, are simply a symptom of self-induced stress.
It’s time that women of color stop being told that all they need is an Advil and a yoga regimen to improve the sometimes debilitating symptoms of PCOS. What they need instead is doctors to get real to the internalized racism they may enacting, and start taking black women’s pain seriously.