The cycle of mischaracterization is finally being broken.
Around 170 million women worldwide struggle with polycystic ovary syndrome (PCOS), a hormonal and metabolic disorder that causes infertility, acne, excessive hair growth, obesity and irregular periods.
Now, the condition is undergoing a much-needed name change to polyendocrine metabolic ovarian syndrome (PMOS), a term that medical experts say more accurately reflects the disease’s nature and could lead to better care.
“For years, this complex, long-term hormonal and metabolic disorder has been reduced to a gynecological disease that was thought to just affect people who had cysts on their ovaries,” Dr. Iman Saleh, an OB/GYN and director of obesity medicine at South Shore University Hospital, told The Post.
“If you didn’t have a cyst or the ovary was not enlarged,” she added, “people had a misdiagnosis or spent years not getting diagnosed.”
Despite being a significant health problem, up to 70% of women with PMOS don’t know they have it and go undiagnosed.
The syndrome had long been deemed gynecological, meaning the focus was primarily on the ovaries and reproductive structure, despite it affecting many other bodily systems.
And the cysts that became synonymous with PCOS aren’t always what they appear to be, as a study published Monday discovered that many are actually “arrested follicles,” or eggs that haven’t matured due to hormonal imbalances.
The name change — pushed by 50 academic, clinical and patient organizations following a global survey — encourages doctors to look beyond the ovaries to hormonal and metabolic dysfunction and fluctuations that cause issues with metabolism, weight, reproduction, skin and mental health, Saleh said.
“Now we can focus on these patients, not just on fertility issues or menstruation issues, but we’re going to be able to focus on long-term impacts of these hormonal fluctuations they have,” Saleh added.
The revamp, under debate for decades, will be a particular boon to PMOS patients who often struggle with their weight and metabolic health and face increased risk of high blood pressure and diabetes.
And women may get diagnosed earlier. Many women find out they have the condition in their 20s and 30s as they labor to get pregnant.
“The care will be really tailored to focus on where they are in their life and what symptoms are included in this syndrome,” Saleh explained.
“If it’s a menstrual issue, you’re going to focus on the menstrual issues. If it’s a fertility issue, you’re going to focus on the menstrual and fertility issues.”
Overall, rather than treating patients for individual symptoms they may be experiencing, Saleh believes the new term will inspire a more holistic approach to care.
“Instead of zeroing in on the ovaries being a problem, we’re looking at it as a whole endocrinology metabolic syndrome,” she said. “And with that focus, it really will let us improve the quality of long-term life.”
