PCOS Was Rebranded As PMOS. We Have Reservations.

The name of a condition that affects between 6-10% of all reproductive-age women was recently changed from PCOS (polycystic ovary syndrome) to PMOS (polyendocrine metabolic ovarian syndrome) by an international consensus process.

Though well-intentioned, we have reservations about this change. We are concerned that it might exacerbate diagnostic confusion among patients and clinicians alike, worsen delays in diagnosis and treatment, and lead to discontinuity in advocacy, research, policymaking, patient education, and clinical tracking.

As a PCOS researcher and patient, I (Soucie) recall the years before my diagnosis: the dizziness that stopped me in my tracks; rapid weight gain; inexplicable hair loss; exhaustion; feeling up and down emotionally, and decidedly not in control of my body. I vividly remember sitting in doctors’ offices for nearly 5 years, begging for answers. Nearly every appointment led to a dead end. Every time, I left without referrals, without testing, and without a diagnosis.

As I know all too well, PCOS/PMOS is a health condition usually marked by years — if not decades — of dismissal, invalidation, frustration, and gaslighting before a definitive diagnosis and treatment plan emerge. All the while, unchecked inflammation and metabolic dysfunction can lead to severe, sometimes lifelong health complications like type 2 diabetes, sleep apnea, heart disease, stroke, liver disease, infertility, and endometrial cancer. Given how distressing this is, we also see elevated rates of mental health concerns in people with PCOS.

It was years before I finally saw an endocrinologist — in another country — who got to the bottom of my symptoms and put all the seemingly disparate pieces together. I left that appointment with a prescription for metformin to control my high insulin levels — and that was it. There were no specific plans for follow-up. Though that appointment was life-changing, I never saw that doctor again and was left to manage symptoms on my own.

My experience was sadly typical of women in many countries throughout the world. In Canada, women wait an average of 4.3 years, and have consults with at least three providers before receiving a diagnosis. In the U.S., up to 7 in 10 women (69%) go undiagnosed. The experience of seeking a diagnosis is described by women as frustrating, invalidating, emotionally exhausting, and requiring unreasonably heroic amounts of self-advocacy and persistence. In an international study of 1,385 women, mostly in Europe and North America, only one-third were satisfied with their diagnostic experience and just 15% were satisfied with the information they received about their condition.

The name change was intended to offer a more accurate and informed description of PCOS/PMOS to improve diagnosis and quality of care by eliminating an inaccurate emphasis on ovarian cysts and including endocrine and metabolic underpinnings and impacts. While clarifying this shift can support multidisciplinary care, we believe the name change itself may lead to unintended consequences.

The core problem facing most patients is not a lack of clinical understanding that metabolic impacts are part of PCOS/PMOS; data suggest the majority of ob/gyns are aware. In one study, more than 85% of respondents (mostly ob/gyns) were aware of the cardiometabolic comorbidities. And clinical guidelines have long called for comprehensive polyendocrine and metabolic health screening in PCOS/PMOS. This is a well-established clinical norm after someone is diagnosed.

Instead, the core issue is that most doctors are not fully trained to put the diagnostic pieces together to think of PCOS/PMOS at all — meaning even well-resourced patients bounce around without answers, usually for years, while unchecked inflammation continues. Changing the name will not change that reality.

Demarcating that polyendocrine and metabolic dysfunction is a core part of the condition changes nothing of substance clinically. It doesn’t change how the diagnosis is pursued or make it more likely to happen sooner.

That won’t happen until we routinely assess inflammatory, endocrine, and metabolic risk profiles in all patients — to ensure we can capture and manage risk well before someone’s condition occurs and progresses, and to be able to diagnose and treat patients with PCOS/PMOS (and other conditions) much earlier.

Of note, the name change does not alter the diagnostic criteria, which include multi-systemic involvement, requiring two of the following: (1) oligo-anovulation, (2) clinical or laboratory signs of hyperandrogenism, and (3) polycystic ovaries on ultrasound or elevated anti-Müllerian hormone (AMH). Adolescents are diagnosed using just the first two.

Ultimately, the name change doesn’t get us closer to eliminating the lengthy diagnostic delays, fragmented and siloed care, gaps in research funding, or poor health outcomes.

We believe the effort and resources that have gone into crafting and unveiling this name change siphoned limited resources and bandwidth away from the critical research, training, and advocacy for better diagnosis and treatment pathways — including a cure — all sorely needed for people with PCOS. It appears that a once very united PCOS/PMOS community is now divided over this prominent decision.

The consensus says that “an accurate new name was prioritised over retaining the PCOS acronym.” But the term “PCOS” itself has become a lifeline and rallying call for the millions of women who have found relief in and built advocacy networks around this very name — which symbolizes long-searched for validation and relief.

We worry that shifting the name that many used to understand their relationship to their bodies and find peer and clinical support will wreak more confusion in a field where confusion already abounds. It may also lead to discontinuity in research, policymaking, and clinical tracking, especially during transition periods (e.g. by affecting ICD codes and clinical trial registries).

We do recognize that PCOS is a misleading name, and that narrow reproductive frameworks have stalled progress. However, we also know that of the 14,360 people surveyed about the name change, the perspectives of many who dissented and voted against the change were not adequately reflected in the ultimate decision.

At the heart of our concerns is a shared desire for better outcomes for the PCOS/PMOS community. But we worry this well-intentioned change may actually take us further from this, at least at first.