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PCOS is a common condition that’s not commonly understood, which isn’t terribly surprising.
The frustrating reality of many women’s health conditions is that there’s not enough information available to the public…and an absolute abundance of false claims.
As we know by now, when women don’t have the answers they need about their own bodies, they’re vulnerable to the trap of medical misinformation. And in the case of PCOS, that misinformation is all over the internet. Our goal, as always, is to cut through the noise and give women the accurate information they need to advocate for their health.
For example, the term “adrenal PCOS” has been floating around — but is this a real thing or another example of Internet misinformation?
We enlisted expert Sarah Nadeem, MD, an endocrinologist, to break it down.
First things first: Is 'adrenal PCOS' a legitimate term?
You may have heard the term “adrenal PCOS”, and potentially have even seen that this term refers to a subtype of PCOS. But, according to Dr. Nadeem, “adrenal PCOS” is not a medically valid term.
“Adrenal PCOS is not a scientific diagnosis,” she says. “PCOS is a disease which involves multiple systems including the ovaries and adrenal glands. There is no such thing as adrenal PCOS.”
According to Dr. Nadeem, the term has been popularized online without any evidence or verification.
So, why are people using the term?
Unfortunately, fabricated terms in the world of women’s health are nothing new (see: Cortisol face).
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Adrenal disorders exist, and people with PCOS may exhbihit these disorders. A 2016 study found that some people with PCOS may produce excess adrenal hormones, with researchers noting that in some of the women studied, androgens (or sex hormones) were produced by the adrenal glands rather than the ovaries.
But the idea that “adrenal PCOS” is a type of PCOS is an unfounded one, according to Dr. Nadeem, who believes it’s good old-fashioned social media-driven medical misinformation behind the term.
“Adrenal PCOS is a made up term,” says Dr. Nadeem. “Some of this I believe comes from a lack of understanding of science and physiology.”
What role do adrenal glands play in PCOS?
“Adrenal glands are responsible for release of multiple hormones that affect different systems in our body,” says Dr. Nadeem. “In certain diseases and syndromes, there is excess or lack of adrenal hormones.”
In people with PCOS, Dr. Nadeem explains, levels of certain hormones produced in the adrenal glands, including testosterone (which is mainly produced in the ovaries, but also produced in smaller amounts in the adrenal glands) are slightly higher than the reference range for women without PCOS.
What role does cortisol play in PCOS?
Ah, cortisol — a term you’ve almost certainly heard thanks to social media-driven wellness discourse.
First things first, let’s clear up what cortisol really is.
“The term cortisol refers to a set of hormones that are also made in the adrenal glands,” says Dr. Nadeem.
“Cortisol excess or deficiency is not a diagnostic marker for PCOS,” adds Dr. Nadeem. “Studies have not shown evidence of cortisol as a primary abnormality in women with PCOS.”
A PCOS diagnosis is made when two out of three markers are identified (irregular cycles, acne/facial hair/elevated DHEAs or testosterone levels, and a specific PCOS presentation on an ovarian ultrasound). Cortisol is not part of the equation.
There may be a misconception that people with PCOS need to be more “mindful” of their cortisol levels
Social media would have you believe that you should be thinking (or…obsessing) over your cortisol levels, and constantly doing things to “bring them down”. In reality, with or without PCOS, this is not something we need to be thinking about.
“One cannot be mindful of cortisol levels — they fluctuate, as they should in a normal person, during the day,” says Dr. Nadeem. “Focusing on cortisol levels in PCOS actually leads you away from the actual medical issues in women with PCOS.”
The consequences of medical misinformation, as always, are real.
“[This term is] misleading, non-scientific and can be harmful and people with PCOS should be treated by board certified physicians with evidence based guidelines, for optimal health,” she adds. "Non-scientific, non-evidence based methods often cause more harm than good and delays effective care.
If you do have PCOS, stick to science-back management under your doctor’s care
Obviously, every case is different, and the most important thing you can do is run any questions or concerns by a doctor who understands your case.
But when it comes to managing the condition, evidence-based strategies — which include cardio and strength training, as well as managing symptoms under the care of a doctor, are king.
Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Vogue, Parents, MarieClaire, Elle, Cosmopolitan, Motherly, and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.
