I’ve been at odds with my reproductive system for almost 20 years. From the onset of my first cycle at 11, I’ve dealt with significant blood loss and excruciating pain. By age 14, I was diagnosed with ovarian cysts. The cysts posed no life-threatening risks but didn’t necessarily signify I was risk-free. My reproductive functions have alluded to bigger problems. At 19, I bled through an entire mattress after having a medical abortion. The same occurred when I nearly miscarried a second pregnancy at 27 years of age. I was warned I’d be on bed rest the next 30+ weeks if I didn’t terminate. I terminated a third pregnancy 5 years later at 32. My now husband and I were both traumatized by the volume of blood lost that evening.
Following the third pregnancy, I had intense pelvic pain. When I reported it to a sonogram tech at Planned Parenthood, they instantly wrote me off. When the pain advanced from inconsistent to almost daily and started to spread, I brought it up to my OB/GYN Nurse Practitioner. The NP was warm but dismissive of my concerns. In so many words, she implied the issues would be resolved once I shed some excess weight. When the pain persisted (alongside more symptoms), I sought a third opinion from a Black woman doctor. A few weeks later, I learned it was uterine fibroids and ovarian cysts wreaking bodily havoc.
Roughly two-thirds of all women experience fibroids by the time they reach 50. Diagnoses are reported more widely amongst women of color. They are particularly prevalent in women of African descent. Research shows that Black women are diagnosed with fibroids at least three times as frequently as White women. Black women are often diagnosed earlier in life than White women. They are also more likely to report having fibroids larger in number and size-making symptoms associated with the disease more severe. More moderate symptoms include heavy bleeding, chronic (often severe) pain, anemia, anemia-related fatigue, feelings of fullness in the bladder and stomach, frequent urination, and moderate to severe bloating. Infertility and complications with pregnancy are common in cases that are more severe.
Nearly 25% of Black women aged 18-30 have fibroids. That’s more than 4x the volume of diagnoses reported by White women in the same age range. The disparity extends to treatment for the condition. Black women are at least 2x more likely than White women to require hysterectomies-the most extreme form of treatment currently available to women suffering from fibroids. Why is there such a dramatic difference across racial groups? While there is no official known cause for fibroids, potential risk factors such as menstruation starting at earlier ages, obesity or pre-disposition to obesity, higher stress levels, and lower levels of Vitamin D are prevalent among Black women.
A determinant in the disproportionate rate at which Black women suffer from fibroids compared to White women is estrogen. In a recent discussion with HCP Live, Dr. Erica Marsh-a professor of Obstetrics and Gynecology at University of Michigan Medical School-outlined a connection between “individuals of African descent having higher levels of estrogen on average” and fibroid growth being “facilitated by estrogen and progesterone levels.” Marsh commented on the essentiality of women having sufficient levels of Vitamin D in order to prevent development of fibroids. As referenced earlier, Black women naturally have lower Vitamin D levels than women belonging to other racial groups due to our bodies processing and metabolizing the vitamin differently.
Another factor potentially being overlooked is income. In the United States, health coverage depends on how much individuals earn and what amenities they can afford. As such, having access to routine follow-ups, screenings, and treatment depends on quality of coverage. Women who lack adequate coverage (or have no coverage) are more likely to avoid taking steps toward getting properly diagnosed, counseled, and treated for symptoms that appear to be non-urgent. Women who are unemployed or employed in low-wage positions without health coverage may avoid non-urgent medical care entirely. In cases where women are employed with health insurance but wages and quality of coverage are low, the costs of owing copays, having to secure child care, and potentially missing out on wages in order to be seen would undoubtedly make a dire economic situation worse. Structural racism acts as another invisible agent. Facets of structural racism like redlining have contributed to (and continue to contribute to) disparities in healthcare access. The disparities are perpetuated by local governments divesting from majority-black neighborhoods. The end result is a majority of Black Americans only having access to care at under-resourced hospitals, which often translates to poorer quality of care.
How does this all add up for little old me? Genetics aside, I’m a decently-paid Medical Social Worker with good healthcare coverage. I’m a patient at one of the best OB-GYN clinics in Chicago. I don’t have children and have more paid time off than I realistically know what to do with. Short story short, I don’t face the same barriers to access deterring many Black women from being diagnosed and treated for fibroids. So what led to my very present case of uterine fibroids and ovarian cysts being undetected by the nurse practitioner I saw this Spring? Put simply, the answer is implicit bias. Among the societal and structural determinants impacting race-related health discussed in the preceding paragraphs, Dr. Erica Marsh identified “healthcare associated racism” as a leading component in the disparate rates at which Black women are diagnosed with fibroids.
Racism is rampant in the American healthcare system. Its long and ofttimes barbaric history spans as far back as the days of chattel slavery. A 2022 documentary, The Color of Care, delves into the issue of race-based medical bias. Much of the bias in medicine stems from a belief that Black people are biologically different from White people. This belief made the commodification of Africans-a ‘must’ in the justification and perpetuation of slavery-possible. Once African slaves and their offspring were perceived as commodities, involuntary (read: unethical) and invasive experimentation on Black bodies was full speed ahead. Such misadventures in medicine and science birthed long-held misconceptions about Black wellness. Among those misconceptions is the belief that Black skin is literally thicker than the skin of people of other races and that Black people have higher thresholds for pain. I’ve had two consistent gynecological providers-each of them being older and White. Given how prevalent racism is in healthcare, it’s more than plausible that I and women like myself had concerns about reproductive health dismissed because of implicit bias.
The severity of the issue is backed by data. A 2021 study conducted by NORC found that 59% of patients believed implicit bias and discrimination are a problem in the U.S. healthcare system. Nearly 50% of physicians agreed with those patients’ perceptions. The survey indicated 12% of all survey respondents had been discriminated against in a healthcare setting at some point. Of that 12%, about 40% of responses came from minorities. At least 21% of Black patients recalled being subjected to implicit bias by their primary physicians. The number of complaints was much smaller for Hispanic and Asian participants. At 11% and 8% respectively, it appears these minority groups experienced bias at a significantly lower rate than Black participants. The data reflects that Black patients were twice as likely to report instances of implicit bias than White patients. Though the sample sizes for both groups were relatively small (at roughly 2000 patients and 600 physicians), the survey data points to a tangible connection between the prevalence of implicit bias and the subpar treatment many Black patients receive from healthcare providers.
Race isn’t the most significant factor in the late diagnosis phenomenon. As noted earlier, my Nurse Practitioner blamed the symptoms I described to her on my being overweight. Though I had nearly almost every classic symptom associated with uterine fibroids, ovarian cysts, AND endometriosis, I was simply advised to lose some weight. My experience is akin to the experiences of many overweight patients. Regardless of gender, income, or race, medical providers often center a patient’s weight as the root cause of new onset symptoms. This makes the issue of having medical concerns dismissed when you’re overweight an intersectional issue. It’s an issue that is so pervasive many overweight patients report avoiding medical treatment for fear of being treated poorly on account of their weight.
In a recent documentary put out by Scientific American, the impacts of what the publication refers to as ‘anti-fat bias’ are explored further in depth. For the most part, bias manifests in ways that are seemingly subtle. These subtleties range from time spent engaging patients and the size of cuffs used to monitor blood pressure to the size of exam room tables, chairs, and hospital gowns. Less subtle forms look like providers using phrasing like “lazy,” “weak-willed,” and “non-compliant” when describing overweight patients. Though they may not write or verbalize all thoughts concerning patients’ obesity, there is overwhelming evidence that medical providers associate obesity with poor hygiene, non-adherence, hostility, and dishonesty. Research suggests that clinicians treat patients based on visible factors. 50% of primary physicians viewed obese patients as “awkward, unattractive, and ugly.” Given that weight is a visible marker of health, it makes sense that providers make assumptions about who we are as soon as they walk in the door.
Such widespread stigma toward obesity has serious consequences. In many cases, patients are misdiagnosed when providers’ implicit biases lead them to shift blame on patients’ weight instead of honing in on what problems the patients present with. At the root of this practice is a common misconception that obese patients are “less likely to follow medical advice, benefit from counseling, or adhere to medications.” The assumption is that patients will essentially waste providers’ time by not following prescribed treatment plans and being consistent with medications. Providers default to being dismissive and short because their bias paints overweight and obese patients as unworthy of quality interactions. The irony is patients subjected to weight bias are at risk of gaining more weight. Studies show the physiological effects of being discriminated against or dismissed because of weight can cause blood pressure, cortisol levels, fat deposition, and inflammation to spike. One such study-conducted in 2016-captured the experiences of over 21,000 Americans who were overweight or obese. It was concluded that “perceived weight discrimination remained significantly associated with increased incidence of cardiovascular conditions and stomach ulcers, as well as prevalence of diabetes and high cholesterol” even after accounting for sociodemographic factors like race, gender, and economic circumstances; BMI, and physical activity. The survey’s findings also indicated women were impacted by weight bias disproportionately.
The sad news is this specific form of bias has only intensified. The likely cause behind weight bias in the medical field increasing rather than decreasing is medical providers being uneducated about bias and the complexities surrounding weight gain. Risk factors like trauma, depression, poverty, and underlying conditions that cause or exacerbate weight problems require a level of consciousness beyond the clinical scope. In the absence of that insight, patients who are overweight will continue to be placed at risk of being misdiagnosed or not being diagnosed at all. This is especially concerning for women with reproductive diseases. Conditions like fibroids, endometriosis, and Polycystic Ovarian Syndrome are known to cause significant weight gain and be caused by individuals being overweight. In America, nearly 42% of adults meet criteria for obesity. An alarming 49.9% of that population is made up of Black Americans. If we know that Black women face higher risks of developing both obesity and fibroids, the message for medical providers is to retrain the mind to recognize the connection between race and risks factors for certain diseases rather than stigmatizing Black female patients (and any patient, really) who visibly present as being heavier than what’s considered medically or socially acceptable.
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