Navigating PCOS Diagnosis Is Hard — Especially for Women of Color

Navigating PCOS Is Hard — Especially for Women of Color

Irregular or heavy periods. Hair on your chin or chest. Body acne. You don't just have to suck it up and live with these symptoms, and they aren't just part of "being a woman." They could be signs of polycystic ovary syndrome (PCOS), which affects about 1 in 10 women of childbearing age. Yet, it's incredibly difficult to identify, leading up to 75% of affected women to go undiagnosed — particularly women of color.

Why is PCOS so tricky to diagnose? 

No single test confirms PCOS. To get a diagnosis, patients should have two of three symptoms: high levels of androgen hormones, irregular periods, and/or cysts on the ovaries. But, these guidelines have evolved, and not every doctor follows the same protocol. Plus, "no two [PCOS] patients are exactly the same," says Lucky Sekhon, MD, a reproductive endocrinologist, infertility specialist, and OB-GYN at RMA of New York.

The added challenges for women of color 

PCOS can be associated with other health issues that disproportionately affect women of color, such as heart disease. Add medical gaslighting, racial bias, and a general lack of awareness about PCOS, and the barriers become clearer. "There are certain populations that are more prone to it, and we know that there's a genetic predisposition," but the reasons are unknown, says Sekhon. PCOS can also manifest differently depending on your race or ethnicity. These differences may complicate the process of getting a diagnosis or detecting risk factors in women of color, especially if the research that creates the criteria are largely based on results from white women. 

Your move

Start by sharing suspected PCOS-related symptoms with your doctor and ask for a comprehensive workup. Another way to get your concerns heard is to bring someone along to your appointments. “You're less likely to have your questions dismissed or rushed through when there's a witness,” says Sekhon. 

We asked you to vote on a question you'd like answered. The winner was:

What can be diagnosed by genetic testing?

FEATURED EXPERT:

Amanda Gerard, MS

Certified genetic counselor at Baylor College of Medicine

"There are a lot of types of conditions and diseases that can be diagnosed by genetic testing. Diagnostic genetic tests … determine whether someone has a specific genetic condition. [Predictive genetic tests] often focus on conditions that can happen later in somebody's life, [such as cancer or heart problems]. They typically don't mean that somebody will develop a specific disease, only that they have an increased risk to develop that disease. [A carrier screening is] a genetic test people can have either before or while they're pregnant to check for whether [they're] carriers of specific genetic conditions that could be passed down to the child.

"Many health issues can be influenced both by genetic and nongenetic factors. If somebody is considering whether they want to do a certain type of genetic test … it can be beneficial to meet with a genetics provider — that could be a genetic counselor or a geneticist — to talk about appropriate options, depending on the specific type of information that they're looking for." 

This interview has been edited and condensed for clarity. You can read the full story here.

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This week, Skimm Well writer Sami Roberts tested a device that claims to reduce stress and improve sleep. 

What we tried: Truvaga

Where you can find it: On their website

What it'll cost you: $299

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