Calling it What it Is.
In a hallmark win for women's health, polycystic ovary syndrome (PCOS) gets renamed.
After an arduous 14 year-long fight, polycystic ovary syndrome (PCOS) is being renamed as polyendocrine metabolic ovarian syndrome (PMOS), finally calling the painful condition by words that actually, and accurately, describes it. The historic name change was published in the Lancet medical journal and announced at the European Congress of Endocrinology in Prague this week.
It’s a big win for women’s health. An estimated 10% to 13% of reproductive age women around the world suffer from PCOS, but roughly 70% don’t know even know they have it (!). South Asians are also especially at higher risk. Experts and patients hope the renaming helps speed up diagnoses for women and reduce medical gaslighting in the process because calling it PCOS dangerously, and incorrectly, suggests that ovarian cysts are a main feature of the disease.
“By calling this condition polycystic ovary, we’re missing the big picture,” Dr. Alla Vash-Margita, associate professor of obstetrics, gynecology and reproductive sciences at Yale University, told CNN. “There was a lot of stigma and myth related to this name. People thought they have large cysts, which they do not have.”
According to the World Health Organization (WHO), the disease can include a variety of symptoms like irregular menstrual cycles, difficulty getting pregnant, female-patterned baldness, type 2 diabetes and cardiovascular disease. While a name change has been the topic of discussion in academic articles since 1995, according to Time, it took a coalition of providers and experts, spearheaded by patient advocacy, to finally make it happen.
Dr. Helena Teede, an endocrinologist and professor of Women’s Health at Monash University in Australia, says it’s about time.
“The efforts here are unprecedented,” she said to the NYT. “Nobody’s put this much effort into a name change ever. We want this to stick and to make it not just an idea from a few experts, which is how it used to happen. We used to never consider patient perspectives when we changed the name.”
And that’s the part of the story that really blows my mind because it points to how important listening to patients is, and also how normalized it is to not seek, or even consider, that perspective. This is especially critical in areas of women’s health where a lethal lack of research, combined with our cultural inability to believe women about their symptoms, means self-advocacy could be the difference between life and death. The knowledge and credibility gaps are real, folks!
As I write in my book, The Pain Gap, while the onus should not be on women to be believed about our pain, suffering and symptoms, until science and the human race catch up, advocating for ourselves and our bodies is all women have in many ways.
The irony of being generally dismissive of patient advocacy is that it is OUR BODIES we are talking about. And as we see in the case of this historic renaming of PCOS to PMOS, listening to patients, especially women, can be lifesaving for everyone.
The lesson? Listen to and believe women.
The point about 70% of affected women do not even know they have the condition really highlights why the rename matters practically, not just semantically. A name that points to metabolism and endocrine function instead of ovarian cysts could genuinely change what doctors screen for from now on. Encouraging to see this kind of shift!
Finally! A victory for clarity as well. Every time I made the diagnosis I told my patient that PCOS was a dumb name but *someday* it would get an accurate description.