You may have heard the recent news about PCOS (Polycystic Ovary Syndrome) being renamed to PMOS (Polyendocrine Metabolic Ovarian Syndrome), an updated term that health professionals say better encompasses the condition.
A WELCOMED CHANGE
According to Nisha McKenzie, PA-C, CEO & Founder, Women’s+ Health Collective, Menopause Society Certified Practitioner, and AASECT Certified Sexuality Counselor, this name change is a wonderful, welcomed change 14 years in the making.
“There is incredible power in words—and the words here have never made any sense,” McKenzie said. “This updated name corrects the fundamental inaccuracy that the ovaries are either at fault and/or creating pathological cysts on the ovaries.”
McKenzie explained how “polycystic” implies pathological ovarian cysts, which are not a feature of this condition and never have been.
“Signs of PCOS on ultrasound show multiple immature follicles, or follicles that haven’t fully developed, not true cysts,” she said. “I would like to qualify however, that anyone with ovaries can and will develop ovarian cysts, and many of these cysts are the normal cysts that ovaries are supposed to develop, but people can develop pathological cysts, as well. This can happen just by nature of having ovaries though and is not part of PCOS.”
The misleading name, McKenzie said, has contributed to up to 70% of affected individuals remaining undiagnosed, as well as to widespread confusion among both clinicians and patients.
“And let’s be real, the moment a non-gynecologist sees the word ‘ovarian’ in a diagnosis, they wipe their hands of it and mentally file it under ‘someone else’s lane,’” McKenzie said. “Additionally, there is significance in removing a part of this name that was not only inaccurate, but led to many being dismissed, minimized, and shamed—namely in areas and cultures where infertility carries stigma, and where weight is erroneously seen as a personal failure.
“And we can’t forget to mention, we got the whole world to agree on this! When’s the last time there was global agreement on something? We have to admit this is a win in and of itself.”
PMOS (or as one of McKenzie’s patients calls it: Piss Me Off Syndrome) better reflects the multisystem, complex, inflammatory, full body, metabolic nature of the disorder. PCOS, McKenzie explained, has never been simply a gynecologic condition:
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Poly: meaning many
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Endocrine: meaning hormone systems
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Sex hormones such as androgens/testosterone (important in cycles, fertility, and dermatologic disorders).
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Metabolic hormones such as insulin (important in blood sugar control/diabetes).
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Neuroendocrine hormones such as serotonin (important in gut health and moods).
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Reproductive hormones such as estrogen (important in cycle regulation and fertility).
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Metabolic: Putting insulin resistance at the center of this disorder now, vs as possible side effect
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Ovarian: When affected, people can see irregular cycles, lack of or infrequent ovulation, and fertility challenges, but these issues are not the origin of the disorder
“Some people with PMOS do not have cycle irregularity, or fertility concerns. And as mentioned, having cysts on your ovaries has never been one of the diagnostic criteria,” McKenzie emphasized. “Insulin resistance and metabolic dysfunction are at the core of this condition, not the ovary. This can lead to increased risk of type 2 diabetes, gestational diabetes, high cholesterol, high blood pressure, heart disease, and liver disease.”
HOPE FOR BETTER CARE AND CHANGING THE CONVERSATION
With the update from PCOS to PMOS, there’s an aspiration towards more comprehensive care for those living with the disorder.
“The hope is that including ‘polyendocrine’ and ‘metabolic’ in the name might encourage clinicians to screen and diagnose earlier, take long-term heart health more seriously, collaborate with other medical specialists for comprehensive, whole human care, and move past a gyn-only, fertility only lens,” McKenzie said. “Perhaps this will also legitimize this as a real and serious medical condition with long-term consequences, not dissimilar from diabetes, increasing opportunities for funding, research, awareness and education.”
The term update reflects a larger conversation more and more people are having about women’s health. McKenzie hopes this will reshape how this condition is understood by clinicians, patients, researchers, and policy makers, moving the conversation away from a narrow, reproductive-only framework and toward a more complete understanding of women as whole people whose health is deeply interconnected, and truly only complex.
“The previous name very often minimalized the lived experience of patients. I can’t tell you how many women have told me they’ve been told, ‘if you would just lose weight, your PCOS would be better’—all while significant metabolic, cardiovascular, endocrine, and mental health implications were completely overlooked,” McKenzie said. “Historically, women’s symptoms have been put on all their own separate islands: reproductive symptoms sent to a gynecologist, metabolic symptoms sent to a primary care provider or endocrinology, mood symptoms dismissed, sexual health ignored, and preventative cardiology care delayed, at best.”
MOVING FORWARD
While the update from PCOS to PMOS is a step in a better direction, McKenzie explained why she thinks the name isn’t perfect—and that we’ve got more work to do.
“Not all people will have major metabolic dysfunction. The psychological symptoms remain unnamed here, and underrepresented,” she said. “The ovarian terminology still centers cisgender reproductive language. But science is ever evolving and refinement will hopefully continue.”
If McKenzie had her own wish come true, the word “ovarian” would be removed altogether.
“Again, this is just an opportunity for clinicians to file it under ‘someone else’s lane” and for researchers to withhold funding,” she said. “Maybe I’d even have it called PMTS (polyendocrine metabolic testicular syndrome)—you know, all in the name of science, just to see if we might then get as much funding as numerous other very important disorders and diseases, like diabetes and heart disease!
“In fact, we do see this disorder in men; it’s called metabolic syndrome, and when we see this, we treat with medications to control blood sugars, GLP-1 agonists, cholesterol medications and actually complete workups and discussions to reflect and understand the underlying cause and the downstream effects. In women, this is the same syndrome, and it just so happens to also affect the sex hormones.”
Medicine, McKenzie noted, is resistant to quick changes.
“The plan is to roll out this new name over the next three years,” she shared, explaining that it will take at least that long to work on change within research nomenclature, patient and clinician education, coding within insurance systems, textbooks, electronic medical records, etc. “But we still have work to do to clarify diagnostic criteria and improve upon treatment options.
“Words are powerful, but this is just a name. We cannot stop here.”
WHAT WOMEN CAN DO RIGHT NOW
McKenzie offered women a shortlist of action items they can bookmark in order to have the best chance at improved care.
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Ask for comprehensive hormonal testing, not just an ultrasound. This should include metabolic screening for things such as fasting insulin levels and inflammatory mediators.
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Discuss heart and mental health, as well as your reproductive symptoms.
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Advocate for care for your whole body, for you as a human, not for just your ovaries. Let your clinician know all of your symptoms, how they affect your life, your relationships, and your productivity.
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Make a list of your concerns and bring it in to your appointments; hand it to the medical assistant prior. Better yet, send it in through your online portal a couple days prior to your appointment so it can be reviewed and your clinician can create a plan to get through as much as possible in your visit.
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Arrive to your appointment at least 10 minutes early to allow time for check-in and for the medical assistant to get your vitals and history—this helps optimize your time with your clinician!
Written by Sarah Suydam, Managing Editor for West Michigan Woman.
