One of the most common hormone disorders affecting women has a new name, and local physicians say the change could help patients receive earlier diagnoses and better treatment.
Polycystic ovary syndrome, which affects about one in eight women worldwide, has been renamed polyendocrine metabolic ovarian syndrome after an international consortium concluded the old name overstated the role of ovarian cysts while understating the disorder’s broader effects on hormones and metabolism.
Experts emphasized that the new name doesn’t change the diagnosis or available treatments immediately. Instead, they hope it helps patients and physicians better understand that the condition affects hormones, metabolism and overall health – not just the ovaries.
Sarah Clevenger, 43, of Bolingbrook, who was diagnosed at age 26 with PCOS, said the new name PMOS is “more encompassing.”
“I had every textbook symptom,” Clevenger said, “except the ovarian cysts.”
Polyendocrine metabolic ovarian syndrome “is characterized by fluctuations in hormones, with impacts on weight, metabolic and mental health, skin and the reproductive system, according to the Endocrine Society.
“I think it’s appropriate,” Dr. Arati Reddy, a board-certified endocrinologist at UChicago Medicine AdventHealth Bolingbrook, said of the name change. “I’m not sure any of us thought of PCOS as an ovarian disease to begin with. All the data shows it’s a metabolic disorder, more than ovarian manifestations.”
Dr. Gamilah Pierre, a board-certified obstetrician-gynecologist and a longtime staff member of Silver Cross Hospital in New Lenox, agreed.
“I think it’s a great idea,” Pierre said. “The reason for the name change is because PCOS oversimplified the condition. And it overemphasized the ovarian cysts and underemphasized the multi-system issue that it really is.”
Although no single test exists to diagnose PMOS, diagnosis is made when a woman has at least two of these three symptoms: absent or irregular (including heavy and/or lengthy) menstrual periods; polycystic ovaries as shown on ultrasound; and high androgens, either through elevated blood levels or the following signs: severe or stubborn acne and/or oily skin, excessive facial and/or body hair and hair loss on head.
PMOS also may cause acanthosis nigricans, which are dark, thick velvety skin patches in the body’s creases.
Reddy stressed that the ovarian cysts associated with PMOS are not pathological ovarian cysts.
“They’re just arrested follicles,” Reddy said. “Implying that disease state was probably not accurate.”
Pierre said the name change will make it easier to explain to patients that removing the cysts won’t cure the syndrome.
“This is not a surgical disease,” Pierre said. “This is a metabolic disease.”
Women with PMOS are at risk for infertility, gestational diabetes, pregnancy-induced hypertension, insulin resistance, prediabetes or Type 2 diabetes, cardiovascular disease, high cholesterol, hypertension, weight gain (especially around the abdomen) and obesity, metabolic dysfunction-associated steatohepatitis (commonly known as fatty liver disease), sleep apnea and endometrial hyperplasia (abnormal growth in the uterine lining) or endometrial cancer, depression and anxiety.
For Clevenger, the most devastating part of her diagnosis was being told she’d never get pregnant and then spent 12 years “trying to reconcile to that.”
“We were just told it would not happen until we did IVF, and we just thought, ‘OK,’ and then moved into pursuing adoption. And that was the end of it,” Clevenger said. “No, ‘These are the things you can do to manage your PCOS and control it.’ I just had to deal with it, basically.”
But then Clevenger moved to Illinois, which “changed everything, honestly,” she said.
“My OB said, ‘You can absolutely get pregnant. You need to see a reproductive endocrinologist,’” Clevenger said. “And then she got me a referral for one.”
Clevenger now has two children ages 6 and 2. She manages her overall symptoms with two supplements, a high-protein, low-carbohydrate diet and advocating for herself.
“Definitely find a doctor who will listen,” Clevenger said.
Pierre said the name PMOS will help primary care providers recognize PMOS as a multisystem issue and not merely a gynecological issue.
“This is something that affects your entire life and health,” Pierre said.
This can “really move the needle for people to get diagnosed sooner,” as well as open doors for proper funding, research and care,” she said.
Pierre said delayed diagnoses are missed opportunities to check insulin levels or precancerous linings in the uterus and address struggles with weight. They might need fertility treatments; they might have fatty livers.
Treatment might differ for patients in their 20s than for post-menopausal patients or for patients with long menstrual cycles versus patients who menstruate only several times a year, Pierre said.
“The sooner we realize that every patient is different with PMOS. Then how we treat them depends on where they’re at in life and their needs and goals,“ Pierre said.