08/09/2026
A name can hold up a diagnosis for years.
Polycystic O***y Syndrome (PCOS) was named for cysts that, as Professor Helena Teede puts it, are just not increased or part of the condition.
"What we now know is that this is not primarily an o***y disorder, and its diverse features were neglected." Instead, this condition - which affects hundreds of millions of women around the world - is a hormonal condition, with metabolic, reproductive, mental health and skin changes. “We had failed to listen to the evidence from live experience of women for decades and had reduced the condition to being about ovaries and cysts that were not the problem.”
Harnessing the voices of 22000 people globally, including over 14000 affected by this condition, we have a new name: Polyendocrine Metabolic Ovarian Syndrome, or PMOS. This follows 14 years of collaboration involving 56 patient and professional organisations, led by the Monash Centre for Health Research and Implementation and published in The Lancet in May.
Professor Teede highlights that it is the largest initiative ever undertaken to change the name of a medical condition, and it was unique because the voice of affected women was foregrounded throughout.
Read the full story: http://mona.sh/fsb550ZKsLQ