PCOS Is Getting A Name Change
Polycystic ovary syndrome— a.k.a. PCOS—has a new name. The disorder, which reportedly affects one in 10 Canadian women and is linked to both fertility and pregnancy complications, has been renamed polyendocrine metabolic ovarian syndrome, or PMOS, to better reflect the nature of the complex disorder.
In a report published in the academic journal The Lancet, researchers made the case for the name change on the basis that the current name didn’t paint an accurate picture of the wide-ranging condition which affects 170 million women globally. (More than 50 healthcare and patient organizations were part of the process to change the name.)
PMOS doesn’t present with ovarian cysts, and the former name contributed to “misunderstanding among patients, clinicians, policy makers and the public,” according to the paper.
In essence, PCOS was inaccurate terminology that negatively impacted patient care.
It’s believed that by changing the name of the condition to better reflect the diverse spectrum of symptoms that define it, diagnosis, care and research will improve.
What is PMOS?
PMOS is a chronic hormonal disorder that generally affects women between the ages of 18 to 39.
Women that have it produce high levels of male hormones such as testosterone that can create obstructions in the form of small sacs or follicles in the ovaries. That hormonal irregularity can result in a cascade of symptoms that include irregular menstruation, acne, excessive facial and body hair. It can also negatively affect mood.
Those hormonal shifts can affect women’s heart health too, elevating their risk of high blood pressure and affecting insulin resistance, which means it’s a risk factor for obesity and type-2 diabetes.
Diagnosis is usually a mix of medical history, a physical exam, blood work and an ultrasound.
However, getting a timely diagnosis can be difficult. Researchers in Alberta found that diagnosis took up to four years after the first onset of symptoms for many women, with others claiming they did not get specialist follow-up care or comprehensive education on the long-term health impacts of the condition.
The path to diagnosis was rocky for Sankirthana Dyapa, 20, a student at McMaster University in Hamilton, Ont.
“It definitely took me a while to get diagnosed," she says. "I had to keep going back to appointments and repeating my concerns before I finally felt like someone was actually listening to me."
But the biology-physiology student knew something was wrong, despite her sense that her symptoms were being minimized by doctors.
It was that gap in care and support that led Dyapa and fellow McMaster student, Ojaswinee Sharma, 19, to co-found the PCOS Society website, a resource and forum for women coping with the disorder.
"The PCOS community has long lacked not only medical support but also a space where individuals truly feel heard," says Sharma, a biology student.
The PCOS Society combines "education with personal connection," explains Sharma, and since starting the site they've heard from a community of women trying to navigate care. "Over the past nine months, we have received stories from individuals sharing experiences of medical dismissal, isolation and frustration," says Sharma.
A disorder with a long tail in a woman’s life
The wide-ranging health effects of PMOS can impact women throughout their lives, especially if left undiagnosed or untreated. A 2023 Canadian study found that women with PCOS “had two- to four-fold more adverse health outcomes,” which included increased experiences of anxiety, depression and diabetes, as well as kidney, digestive tract and heart diseases.
Sharma says after the PCOS Society was highlighted in a CBC report on the name change, the site heard from women in their 50s. It was a reminder, she says, that there is "no age limit to wanting support, understanding, or finding reassurance through others going through similar hardships.”
Improved education, improved outcomes
Researchers are hopeful the name change, which was announced to coincide with the European Congress of Endocrinology in Prague this month will result in better outcomes for sufferers.
Dyapa is hopeful, too, and feels the change may make a meaningful difference in expanding our understanding of the condition.
"The hormonal, metabolic and mental health impacts [of] can be just as significant, yet they are often overlooked," she says. "Changing the name has the potential to change the conversation around the condition and encourage people to take it more seriously as a whole-body disorder, not just a reproductive one.”
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Flannery Dean is a writer based in Hamilton, Ont. She’s written for The Narwhal, the Globe and Mail and The Guardian.
