PCOS will now be known as PMOS. Aimee Dalton (inset) has the disorder.
PCOS will now be known as PMOS. Aimee Dalton (inset) has the disorder.
Kiwi women could see faster diagnosis and better care after polycystic ovarian syndrome was given a new name, women’s health advocates say.
The notoriously misunderstood hormonal disorder, commonly known as PCOS, impacts more than 170 million people worldwide.
It will now be referred to as polyendocrine metabolic ovarian syndrome(PMOS), as announced in Prague on Tuesday at the European Congress of Endocrinology.
Isis McKay, the general manager of Women’s Health Action, said Kiwi women would be better served by a name that more accurately reflects the broad impacts of the condition.
“PCOS has always been a confusing name. Not everyone with the condition has cysts and focusing on that can send people in the wrong direction.”
The condition predominantly affects insulin and androgen hormones - not just the ovaries - with wide-ranging effects on metabolism, fertility, mental health, and reproductive health.
“For many people, this means spending years feeling like something isn’t quite right before they finally receive a clear diagnosis and, by that point, the effects on their physical and mental wellbeing can be substantial.
“When the name better reflects what the condition actually is, we’re more likely to see earlier diagnosis, better support, and people being taken seriously sooner.”
For many women, that delay in diagnosis can have serious long-term consequences.
Aimee Dalton has struggled with the hormonal disorder for years and says care should be patient-focused. Photo / Supplied
Aimee Dalton, a competitor in last year’s Miss New Zealand, has been struggling with the disorder since a mass was located on her ovary when she was 16.
“I’ve now had over five surgeries, and every single one has been emergency surgery due to the lack of intervention and support in the earlier stages.
“I truly believe that if there had been better monitoring, education and care earlier on, some of the damage and trauma could have potentially been prevented.”
Sue Claridge, a spokeswoman for the Women’s Health Council, said the “far more holistic description” was overdue.
“Years of research showed that the term PCOS was confusing and in many cases harmful to women, and potentially hampered diagnosis”, she said.
“Because there will be a better understanding of the condition, that will hopefully lead to faster diagnosis and better care, in large part because the new name acknowledges the variety of symptoms, including hormones, metabolism, mental health, skin, and the reproductive system.”
Dalton believes changing the name alone won’t fix the underlying problem: “Women with PMOS are still fighting to be heard, properly supported, and understood.”
Women's Health Action General Manager Isis McKay has applauded the change, but says there is still more work to be done. Photo / Women's Health Action
Marginalised groups are particularly impacted by barriers to healthcare access because of systemic discrimination and bias, McKay said.
Studies show Māori and Pasifika women experience longer delays in diagnosis on average, are more likely to perceive their symptoms as normal, and are more reluctant to seek healthcare.
“We also know there are systemic inequities at play. Racism, size and weight-based discrimination, geographical isolation, and the many ways ableism shows up in healthcare all have a real impact.”
She agreed that people like Dalton living with PMOS needed to be involved in shaping healthcare responses.
“People with PMOS are the experts in what it’s like to navigate this day to day, and their insights should be shaping how we design services, policies, and where we invest.”
