Navigating PCOS Diagnosis Is Hard — Especially for Women of Color

Polycystic ovary syndrome (PCOS) affects about 1 in 10 women of childbearing age and is one of the most common causes of female infertility. The condition involves an imbalance of reproductive hormones, yet, like many women's health issues, it remains underresearched and difficult to diagnose — leaving up to 75% of affected women desperately waiting for a diagnosis — particularly for women of color.

PCOS can be associated with other serious health conditions that disproportionately affect women of color, such as heart disease and diabetes, and it's hard for doctors to pinpoint. Add medical gaslighting, racial bias, and a general lack of awareness of PCOS in the medical community, and the challenge for women of color to get a swift and proper diagnosis only begins to take shape. We spoke to Lucky Sekhon, MD, a reproductive endocrinologist, infertility specialist, and OB-GYN at RMA of New York, to help us piece together the puzzle that is PCOS and learn how it shows up in different racial groups. 

Why is PCOS so difficult to diagnose? 

For starters, there's no single test that confirms PCOS, and the symptoms and conditions that can coexist vary widely, from irregular periods, excess hair growth, and acne to problems with fertility, weight gain, and insulin resistance. To get a PCOS diagnosis, patients should have two of three major symptoms: elevated levels of androgen hormones, irregular periods, and/or polycystic ovaries. However, these guidelines have changed over time, and not every doctor follows the same protocol — making diagnoses challenging since "no two [PCOS] patients are exactly the same," says Sekhon. For example, "you can have PCOS that's associated with weight gain and metabolic issues that are very overt," but there are also leaner patients who "don't fit the textbook picture at all," she says.

How PCOS affects women of color 

Research suggests that PCOS disproportionately affects women of color. Some anecdotal evidence even says the condition may be more prevalent in these patients, but the reasons are unknown, says Sekhon. "There are certain populations that are more prone to it, and we know that there's a genetic predisposition." Epigenetics, or the "idea that your environment can influence your genetics," may be another factor, she adds. 

It's also true that PCOS may manifest differently depending on race or ethnicity. For example, a 2020 review of previous research found that Black, Middle Eastern, Hispanic, and South Asian women with PCOS were more likely to have insulin resistance than their white counterparts. These differences may further complicate the process of getting a diagnosis or detecting risk factors in women of color if the criteria are based on research on white women, according to one study. 

And with some studies finding up to 80% of American women with PCOS are considered overweight, weight bias can come into play as well — something that may disproportionately affect women of color who "tend to be more ignored" due to the "implicit biases in medicine," says Sekhon.

Ultimately, the added burdens that women of color face when navigating PCOS are likely due to, in part, to medical gaslighting and systemic racism in the healthcare system. Black women may be more likely to have their pain dismissed by doctors, and one study says they're less likely to receive treatment for infertility. Many women of color who suffer from these "invisible" symptoms are made to feel invisible themselves. This bias can fuel the misdiagnosis of PCOS in women of color. 

What you can do to ensure you're heard and treated

First, make a note of any of the following symptoms, according to the Cleveland Clinic: 

• Irregular periods (including missed periods or heavy bleeding) 

• Abnormal hair growth (on the face, arms, chest, or belly) 

• Face or body acne flare-ups 

• Weight gain 

• Skin tags (often in the armpits or on the neck)

• Hair loss 

Then, bring these symptoms to your doctor's attention and ask for a comprehensive workup, which may include blood tests for hormone levels and an ultrasound to examine the ovaries, according to Johns Hopkins Medicine.

If you've been diagnosed with PCOS, Sekhon suggests asking your provider to walk through the criteria they used to make the diagnosis. "You might find that there are holes in [their reasoning] and other things that could be investigated," she says. Ask your doctor if they've done the tests needed to confirm you've met the criteria, and dig into any treatments you're prescribed to understand why your doctor is recommending them, says Sekhon.

One way to help make sure your concerns are heard is to bring a friend or family member to your appointments. "You're less likely to have your questions dismissed or rushed through when there's a witness and someone else there," says Sekhon. 

TheSkimm

PCOS symptoms often differ from one woman to the next, making it difficult to diagnose. But staying informed on these nuances may help you find the answers you're looking for — and ultimately get the care you need.