After more than a decade of global consultation, polycystic ovary syndrome (PCOS) – a condition affecting one in eight women – has been renamed. The hormonal disorder, estimated to impact 170 million women worldwide, will now be known as polyendocrine metabolic ovarian syndrome (PMOS). The name change was published in the Lancet and announced at the European Congress of Endocrinology in Prague on Tuesday, following 14 years of collaboration between international societies and patient groups across six continents.
Why the Name Change Matters
The renaming was spearheaded by endocrinologist Professor Helena Teede, director of Melbourne's Monash Centre for Health Research & Implementation. Experts, including Teede, say the misleading term “polycystic” in PCOS contributed to delayed diagnosis and inadequate medical care. Announcing the new name, Teede stated that PCOS did not capture the “multi-system burden” that people with this condition suffer and directed attention to only one organ. PMOS is expected to better reflect the condition's complex nature, which affects not only the reproductive system but also metabolism, diabetes risk, and cardiovascular disease.
Patient Experiences Highlight the Need for Change
Maddy Mavrikis, from Sydney, was diagnosed with PCOS at age 15. Her GP told her she would probably never have children – a statement she later learned was false. Mavrikis never had cysts on her ovaries, yet was diagnosed with “polycystic ovaries.” Her symptoms included irregular periods, high androgen levels, acne, and excessive hair growth. She also had insulin resistance, which affects about 85% of women with PCOS. Her mother, a pathology professional, questioned the name, noting that the condition seemed more hormonal. The new name, PMOS, addresses this confusion.
The Misleading Nature of 'Polycystic'
Teede explains that the term “polycystic” risked confusion with true ovarian cysts, which can enlarge, bleed, and require surgery. “There are no abnormal cysts in PCOS,” she says. The new name “moves away from the incorrect focus on cysts … to recognising this is a much broader condition.” The effects of PMOS on the body are virtually all endocrine (hormonal).
Decades-Long Campaign Driven by Patients
Doctors initially thought of PCOS as a disease of the ovaries when it was named in 1935. Research later revealed it is caused by an imbalance of hormones, primarily insulin and androgens, affecting multiple systems. However, the name PCOS perpetuated misperceptions that it is primarily a gynaecological condition. Teede says patients instigated the name change. “They wanted it fixed. They know how much they have suffered because of the name, and they were really passionate.” Academic articles discussed renaming since 1995, and in 2012 a US National Institutes of Health forum recommended it. It took over a decade to bring about, with unprecedented global effort involving 56 medical and patient societies across all relevant disciplines.
Valuing Patient Voices
Lorna Berry, a PCOS advocate for over 25 years, was invited as a global consumer representative for the workshops deciding the name change. She describes the process as robust and truly valuing the patient voice. In one group, a doctor initially supported including “reproductive” in the name but changed his mind after Berry explained why many consumers did not want that focus. “When I’ve been in the room with these people that are very smart and have all this medical knowledge, I’ve felt an equal,” Berry says.
The New Name: Polyendocrine Metabolic Ovarian Syndrome
Teede explained that terminology matters. While “reproductive” might be more accurate, it carries significant stigma in parts of the world where labelling a woman with a reproductive condition affects her societal value. After extensive surveys and workshops, the terms “polyendocrine,” “metabolic,” and “ovarian” were agreed upon. The new name, PMOS, was formed by bringing these together. Monash University's Centre for Research Excellence in Women's Health first obtained a mandate in 2023 to change the name after showing patient and professional support. After a transition period, the new name will be fully implemented in the next update to international guidelines for managing the condition, expected in 2028.
Impact on Patient Care and Hope for the Future
Mavrikis was one of over 300 readers living with PCOS who shared their stories with Guardian Australia. Many described struggling to get a diagnosis and appropriate care. Another patient, Rosemary, was told by her GP that a diagnosis wasn't useful unless she wanted children and that she didn't have the “look” of PCOS – reductive comments about eyebrow ridges and belly size. When diagnosed, her care was “patchy at best,” with doctors assuming fertility was her main priority. Mavrikis has been frustrated by doctors relying solely on medication without discussing lifestyle interventions like diet and exercise. She also encountered weight stigma. Despite the challenges, she says the name change offers hope: “Changing the name, for me, shows that they are starting to pay attention to it.”
