There is exciting news for the recently reported 17% of hEDS patients and 14.7% of HSD patients who experience polycystic ovary syndrome, now renamed to polyendocrine metabolic ovarian syndrome.
On May 12th, 2026, a new article was published in The Lancet announcing the name change from polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS). If you don’t live with this condition, the impact of the name change might not feel as significant, but for those of us living with it, the name shapes how a disease is understood, studied, funded, and treated. PCOS has historically been categorized and treated as a cystic ovary disease (as the name implied). However, decades of research have since demonstrated that it is a complex multisystem condition.
The Evolution of a Name
The names used to refer to PCOS have varied throughout the years in literature including: polycystic ovary disorder, a syndrome of polycystic ovaries, functional ovary androgenism, hyperandrogenic, chronic anovulation, polycystic ovarian syndrome, ovarian dysmetabolic syndrome, sclerotic polycystic ovary syndrome, and polycystic ovary syndrome. Now, after a 14-year global effort and rigorous consensus process, the official new name is polyendocrine metabolic ovarian syndrome (PMOS).
Why Change the Name?
The name PCOS no longer reflected what the condition actually is. It implied that the condition was simply about ovarian cysts while overlooking its diverse hormonal and metabolic features. This contributed to delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing. As many patients with PCOS do not have ovarian cysts at all, the name has led clinicians to focus too narrowly on ovaries, leaving gaps in patient care.
The new name, PMOS, was selected to reflect the condition’s true pathophysiology: “polyendocrine” recognizes the multiple interacting hormonal disturbances including insulin, androgens, and neuroendocrine hormones; “metabolic” acknowledges the inherent metabolic features such as insulin resistance, obesity, and increased risks for type 2 diabetes and cardiovascular disease; and “ovarian” was kept because, although many patients do not have ovarian cysts, problems with ovulation and ovarian function remain defining features of the condition.
What the Name Change Means in Practice
The consequences of a misnamed disease extend far beyond semantics. Average funding for PCOS from 2016 to 2022 was around $32 million, compared to roughly $262 million for rheumatoid arthritis, roughly $66 million for tuberculosis, and $420 million for systemic lupus erythematosus, despite those diseases having similar or even lower numbers of cases, degrees of poor health, and deaths. The name “polycystic ovary syndrome” effectively siloed the condition within reproductive medicine, where resources are limited and often biased.
Researchers hope that PMOS research will become eligible for funding through NIH institutes focused on diabetes and heart disease, both of which are directly implicated in this condition. The implementation plan includes formal engagement with international bodies, including the World Health Organization, to integrate the new name into disease classification systems such as the ICD, along with a managed transition period of three years with monitoring and evaluation. The new terminology will be fully incorporated into the International Guideline – already used in 195 countries – when it is next updated in 2028.
What Are the Diagnostic Criteria?
Diagnostic criteria for PMOS (formally PCOS) were established in the early 1990s, and expanded upon in 2003 to include the presence of polycystic ovaries. Many variations of diagnostic criteria have been proposed, but the currently used criteria diagnose a patient if any two of the following are present (adolescents age 10-19 require the first two):
- clinical or biochemical hyperandrogenism
- evidence of oligo-anovulation
- polycystic appearing-ovarian morphology on ultrasound, with exclusion of other relevant disorders.
Clinical or Biochemical Hyperandrogenism
Hyperandrogenism can be identified either through bloodwork showing elevated androgen levels or through clinical signs such as hirsutism (excessive hair growth), both of which have established diagnostic criteria. Hyperandrogenism is considered when a patient has elevated total or free testosterone, or calculated indices of free testosterone such as free androgen index (FAI) or bioavailable testosterone (BioT). Other androgens may also be considered.
To assess for hirsutism, a Ferriman-Gallwey score of greater than or equal to 4 to 8 can be considered for diagnosis. This method of scoring looks at the amount of hair growth rated 0 to 4 in nine body regions: chin, thigh, upper lip, lower abdomen, chest, lower back, upper abdomen, arm, and upper back.
Oligo-Anovulation
Oligo-anovulation refers to a spectrum of ovulatory dysfunction. If a patient experiences oligo-amenorrhea, cycles longer than 35 days or less than 8 menses a year, they may be considered for the diagnosis.
Polycystic Ovarian Morphology
Lastly, polycystic morphology on ultrasound is defined as each ovary containing greater than or equal to 20 follicles, or having an ovarian volume greater than or equal to 10 cm3.
The Parallel to Ehlers-Danlos Syndrome
For those living with hypermobile EDS or hypermobility spectrum disorder, the PMOS story will sound familiar. The hEDS community has long grappled with a diagnostic journey shaped by a condition that is poorly framed, poorly understood, and historically underfunded. The average diagnostic delay for hEDS is estimated at 22 years, reflecting not just complexity, but also systemic failures in how the medical community has framed the disease.
The overlap between these two conditions is not believed to be coincidental. Both PMOS and endometriosis are more prevalent in people with hEDS. It is not yet fully understood why they are comorbidities, but previous studies have suggested hormones may be a factor, and some anecdotal evidence supports that.
While the two conditions are related yet different, there are recognizable similarities in how they have been tossed around throughout medical history with poorly defined names that have not always reflected the true nature of these conditions. The lack of understanding of these diseases leads to delayed diagnoses, lack of appropriate care, and potentially irreversible effects on the body.
Key Takeaways:
- PCOS has been officially renamed to polyendocrine metabolic ovarian syndrome (PMOS) as of May 12, 2026, following a 14-year global consensus process involving over 14,000 patients and health professionals across 56 organizations.
- The old name was scientifically inaccurate – many patients with PMOS do not have ovarian cysts, and the name obscured the condition’s complex hormonal and metabolic features, contributing to delayed diagnoses and fragmented care.
- PMOS disproportionately affects the hEDS/HSD community compared to the general population, with approximately 17% of hEDS patients and 14.7% of HSD patients also experiencing the condition, suggesting shared biological mechanisms worth further investigation.
- Full implementation is expected by 2028, when the International Guideline (used in 195 countries) will be updated to reflect the new terminology, alongside integration into the WHO’s ICD classification system.
By Tayler Goectau,
clinical research coordinator,
disability advocate
@distaaybled
August, 2026
