Goodbye PCOS, Hello PMOS

Earlier this month, The Lancet published an article announcing that Polycystic Ovary Syndrome (PCOS) has a new name: Polyendocrine Metabolic Ovarian Syndrome (PMOS). Read on to learn more about what went into the decision, what the new name means, and, of course, what I think about it.

PCOS: How Did We Even Get Here?

The recent change from polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS) is the latest of multiple rebrands since it was first identified 90 years ago. Initially named Stein-Leventhal Syndrome after the two doctors credited with its discovery in 1935, the condition has also gone by Polycystic Ovary Disease (PCOD), and for the past 35 years, Polycystic Ovary Syndrome (PCOS). 

Drs. Stein and Leventhal conducted exploratory surgery (ultrasound wouldn’t exist for another 20+ years) on 7 young women inexplicably struggling to conceive. In addition to infertility, the women frequently had excess facial and body hair growth (hirsutism) and absent or irregular cycles, which are recognized as common PMOS symptoms today. In surgery, they found that the patients had enlarged ovaries that contained multiple small “cysts” [1]. 

We now know that these “cysts” are not cysts at all! They are actually follicles, fluid-filled sacs containing an immature egg. Follicle development is a normal part of the menstrual cycle. With PMOS, follicles do not complete the full maturation process and remain in the ovary, giving the impression of many small cysts. Despite its inaccuracy, the original description unfortunately stuck, giving us Polycystic Ovary Syndrome.

The Journey from PCOS to PMOS

For well over a decade, experts and patient groups alike have advocated for kicking PCOS to the curb in favor of a more accurate name. What was once thought to be a condition primarily affecting the ovaries and fertility is now understood as a complex, whole-body condition that is influenced by various hormones like insulin, testosterone, and GnRH, with symptoms that extend far beyond difficulty conceiving. 

The misleading association with ovarian cysts is not only incorrect, it’s downright harmful. The inaccuracy bred confusion, delaying detection, diagnosis, and treatment. It’s estimated that up to 70% of those with PMOS are undiagnosed, missing early screening and intervention opportunities for conditions that those with PMOS are at increased risk of developing, like type 2 diabetes, heart disease, and endometrial cancer [2]. In addition to (very justified) frustration with subpar care, those with (formerly) PCOS have expressed that the name is distressing and stigmatizing [3].

The Lancet article outlines the rigorous process undertaken by the group tasked with spearheading the name change. Before work on the new name began, an impact assessment was conducted and ultimately found that the benefits of a name change far outweighed the drawbacks. Next came a series of surveys and workshops to decide on the new name, and finally, the implementation plan. 

What stood out to me about this process was the intentional and meaningful involvement of individuals with PCOS at every step in the process. Thousands (!) of women with PCOS from around the world shared their experiences and perspectives. In collaboration with experts and health professionals across 10 different disciplines, their input shaped the naming principles, approach, key terms that the new name should include, and the final name. Women so often go unheard when it comes to their own bodies and health. Centering the voices of those with PMOS is a powerful acknowledgement of the harms caused by the old name, and the need to include the perspectives of those who are most impacted by this change.

Widespread support and enthusiasm will help with adoption, but the practical implications still loom large. Name changes bring a lot of logistical challenges, from educating providers, patients and the public to updating behind-the-scenes systems like electronic health records and insurance codes (very boring but necessary!). Even with a solid plan, there will be some growing pains in the coming years as the health care industry catches up. 

My Thoughts as a PMOS Dietitian

At this point, it’s probably pretty clear that I think the new name is a huge step in the right direction. Having an accurate name translates to better understanding, and ultimately, better care. Diet and lifestyle changes are effective tools for managing PMOS (even without weight loss!), and are recommended consistently in treatment guidelines as a first-line therapy. Dietitians receive extensive training in treating metabolic conditions with medical nutrition therapy. Medical nutrition therapy uses personalized, targeted nutrition changes supported by research to prevent or manage conditions. Currently, there is no medical nutrition therapy specifically for PMOS, despite the strong metabolic component of the condition. 

Don’t get me wrong – dietitians are well-equipped to manage PMOS by utilizing existing medical nutrition therapy to target specific metabolic concerns commonly seen in PMOS, like insulin resistance and lipid disorders. But, PMOS-specific medical nutrition therapy that comprehensively addresses the unique collection of wide-ranging symptoms is still needed to standardize care, incorporate new findings into clinical practice, and direct future research. It also helps legitimize dietitians’ role in treating PMOS to other providers and insurance companies, which means more patient access to nutrition therapy through referrals and expanded coverage. 

And bear with me here for a second: The fact that this change made headlines across major national and international news organizations like The Guardian, Time, and The New York Times, (I mean, even Forbes and People jumped on board) is a major win for awareness. I would be willing to bet there are a whole lot of people who heard about PMOS for the first time this month, despite the fact that it affects 1 in 10 women [2]. Could this be the PR boost that PMOS so badly needs? 

So, what’s actually changing?

This name change is just that: a name change. The diagnostic criteria and treatment guidelines are the same. Hopefully this new name is the start of even more positive change: greater awareness, earlier diagnoses, better outcomes, more research, and targeted therapies.

Have thoughts about the name change? I’d love to hear them in the comments!