Polycystic ovarian syndrome, or PCOS, affects millions and can be debilitating. A group of world health leaders has agreed to a proposed name change.
WASHINGTON — A group of world health experts and medical leaders agreed to a proposal to rename polycystic ovary syndrome, or PCOS, which is a condition that affects 170 million worldwide.
They agree that polyendocrine metabolic ovarian syndrome, or PMOS, better reflects the condition’s wide-ranging impacts on hormonal and metabolic health.
A report recently published in The Lancet that inspired the effort alleges that the term PCOS is “inaccurate” and leads to delays in “diagnosis, fragmented care, and stigma.”
The study claims that PCOS as a name places focus more attention on ovarian cysts than it does on the overall health impacts of the condition, leading to incomplete diagnostics and care.
Androgen Excess and PCOS Society led the research for the report, which was based on 14,000 survey responses from patients and health professionals, international workshops, and input from nearly 60 academic, clinical and patient organizations.
PCOS is a common condition that affects hormones and can cause irregular menstrual periods, excess hair growth, acne, obesity, thinning hair and infertility, according to Cleveland Clinic.
The cause is unknown, and there’s no single way to diagnose it.
The condition can develop at any time during reproductive age, but most people are diagnosed in their 20s and 30s, when they’re trying to get pregnant.
PCOS is one of the leading causes of infertility and can lead to increased risk of developing other health conditions.
Not all health experts agree with the proposal, however.
The National Polycystic Ovary Syndrome Association acknowledged that the effort and research about the condition was done “in the spirit of what is right and what is best for the people who live with it,” but they do not endorse the name change.
The group argues that adopting new terminology in systems and records is only an administrative step, whereas meaningful change requires improvements in clinical education, referrals, reimbursement, research priorities, patient-centered care, and implementation that preserves patient support networks.
“For many in the PCOS community, today is complicated,” said Sasha Ottey, executive director of PCOS Challenge. “A change of this scale carries real risks across the ecosystem, and many of those risks have not been adequately assessed, openly disclosed, or weighed against the infrastructure people rely on. This process did not adequately meet that standard.”