Why PCOS Affects Women of Color Differently

PCOS affects 1 in 10 women worldwide. So, why is it so undiagnosed and undertreated, particularly in women of color?

PCOS is caused by an imbalance of reproductive hormones, causing immature follicles to surround the ovary. It’s the leading cause of infertility. PCOS can also cause miscarriage, gestational diabetes, and preeclampsia.

In a recent PLOS Medicine paper entitled Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled, the authors state that more clinical and biomedical research should, “provide meaningful opportunities to examine the complex relationship of ancestral influences, environmental exposures, and social factors.”

The paper explains that most physicians and scientists are informed by research done by white males on white males, and that prioritizing a focus on diversity in medical research is key for social justice, economics, and science.

Unfortunately, this has been the case when it comes to Polycystic Ovary Syndrome (PCOS), a serious health problem that affects one in 10 women.

PCOS symptoms include:

  • Irregular menstrual cycles or no period at all
  • Weight gain or difficulty losing weight
  • Skin darkening in the creases of the body
  • Hirsutism, or hair on the face, chest, or other areas
  • Increased acne, especially on the face and back
  • Skin tags
  • Thinning hair 
  • Mood issues

PCOS isn’t just about reproductive health, though. It's also is linked to other serious, life-threatening metabolic syndrome issues and health concerns, including obesity, diabetes, high LDL (or bad) cholesterol, sleep apnea, endometrial cancer, and high blood pressure.

Beyond the physical, PCOS is associated with depression and anxiety. Researchers aren’t sure whether PCOS causes or worsens these health issues or if some of these issues cause PCOS, but the connections are there.

The problems with PCOS treatment today

Sasha Ottey, the Executive Director of the PCOS Challenge: The National Polycystic Ovary Syndrome Association, explains that “PCOS is under-diagnosed and misdiagnosed across the board, regardless of race. There is a huge awareness issue, as it’s been going under the radar for decades since it was first named in 1935,” she says.

1. PCOS is misunderstood and mismanaged

For one, the name itself is pretty unclear. It’s called poly "cystic" ovary syndrome, but many women with PCOS never develop cysts.

Beyond its name, many medical professionals just don’t get it. There isn’t even one set of diagnostic criteria that medical professionals agree on.

Also, most people don’t know that PCOS is a lifelong condition. Plenty of doctors still recommend hysterectomies as a cure or suggest that PCOS goes away after menopause. Neither claim is accurate, according to the National Institutes of Health (NIH). If you have a hysterectomy, the hormone and metabolic issues caused by PCOS may not resolve. And plenty of women still contend with PCOS-related issues after menopause.

2. PCOS doesn’t really belong to one medical specialty

Another problem? “It is an orphan syndrome that nobody is taking ownership of except the infertility community because PCOS is the most common case of infertility,” Ottey says.

But it’s not just about fertility, which is why everyone from gynecologists to endocrinologists have to get involved. Of course, they all approach the condition from different perspectives — and with different responses. Many patients claim that there doesn’t seem to be a deeper understanding nor an across-the-board strategy for treatment.

3. Medical professionals enter into the PCOS conversation with biases

One of the main issues with PCOS is that women’s health issues aren’t taken as seriously. In fact, a paper published in Drug, Healthcare, and Patient Safety stated that, “The physical health consequences and the emotional impact of PCOS have been ignored.” If it’s affecting one in 10 women, why is this the case?

“PCOS has historically been viewed as a female reproductive disorder, and that’s the problem,” Ottey says. Considering so much medical research is centered on white male bodies, it’s not shocking — but that doesn’t mean it’s acceptable.

Doctors also often enter into the patient conversation with their own racial biases. She says that she’s experienced it herself: A doctor will walk into the room and make assumptions based on how she looks.

“They don’t ask about my nutrition or exercise. They just see me and make assumptions — about what I do, what I know, all rooted in being a woman — and a Black woman. They operate from that prejudice,” Ottey says. “If you’re a woman of color or a person of color, especially if you’re in a larger body, you’re just not believed. Your doctor will tell you that you’re eating too much, or you need to exercise more without offering other more effective treatment options.”

In her work with PCOS Challenge, Ottey says she has spoken with patients across the world — and they all share similar experiences. “In India, Australia, South Africa, Nigeria — it’s the same story. They’re just not believed,” she says.

Unfortunately, PCOS affects women of color more severely

PCOS affects women of color more frequently and severely than white women. According to the American Journal of Obstetrics and Gynecology. PCOS is associated with metabolic syndrome. Because Black and Latinx people have a higher morbidity and mortality due to cardiovascular disease and diabetes, “Understanding any racial and ethnic differences in metabolic syndrome among women with polycystic ovarian syndrome is important for prevention strategies.”

The study also found that Black women and Mexican Americans have greater hyperinsulinemia and insulin resistance compared to white women. And yet the research is limited and many patients who are women of color feel they are not being treated properly.

Black women specifically have higher rates of hirsutism (which is excess hair growth) and obesity, as well as a lower likelihood of getting pregnant. And yet, Black women, in particular, have less access to fertility treatments.

Losing weight is not a magic cure for PCOS

PCOS doesn’t present the same way in every person — and yet doctors often resort to recommendations for weight loss or dietary changes time and again, even if the patient already has healthy lifestyle habits and has already exhausted those approaches to treating the disorder without results.

Consider the issue of Body Mass Index (BMI). More recently, people are beginning to understand that BMI is in no way wholly indicative of health. Yet some East Asian women with smaller frames are not assessed for PCOS simply because their BMI is lower or they don’t ‘look’ like there could be an issue, Ottey points out.

“Most health information (like BMI) is based on white men in early 1900s, but ethnic and sex differences need to be included in the care of any patients, especially in PCOS,” she says.

More research is needed

The research done on PCOS and how it plays out in different ethnic groups is lacking because of who is doing the research. For example, one Australian PCOS study didn’t even mention Black people in its first iteration. Ottey, who collaborated on the study, mentioned that this had to be pointed out. The information was later added.

Additionally, studies on PCOS are routinely under-funded, showing the deeply-rooted biases that intersect within the condition. Ottey explains that there is also a decline in the number of PCOS research applicants simply because they know studies are so underfunded. And yet the prevalence of PCOS is growing. 

“Before the PCOS Challenge, there had been NO advocacy efforts,” Ottey says. “And without advocacy and lobbying — without letting the government know that PCOS is an issue — nothing gets done.”

The PCOS Challenge recently took their message to Capitol Hill, demanding that PCOS is seen as a public health priority. More than “just” a reproductive issue, it must be treated as the risk factor for life-threatening-related diseases such as diabetes, cardiovascular disease, and cancer that it is.

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