'The name was inaccurate': PCOS gets a new name after years-long effort

A hormonal disorder that affects 1 in 8 women just got a new name.

Polycystic ovary syndrome (PCOS) will now be called polyendocrine metabolic ovarian syndrome (PMOS). Experts say that the new name better reflects the nature of the disease.

"It was very clear that the name was inaccurate," said Dr. Helena Teede, an endocrinologist and professor of women's health at Monash University in Australia. Teede, who is also the director of the Monash Centre for Health Research & Implementation, chaired the steering group that led the name-change effort.

The decision to change the name was not made lightly. The process involved surveying thousands of people with the syndrome around the world, as well as thousands of healthcare professionals. The funding and oversight of the effort involved 56 academic, clinical and patient organizations. There's a plan to raise awareness of the new name and adopt it in practice over the next three years.

"It was a really robust process, and the community was involved at all stages," Teede told Live Science. "We hope that people will understand and respect the process — understand that it wasn't made behind closed doors with a few small expert groups, which is what normally happens."

What's in a name?

The idea to pick a new name for PCOS isn't new, with some calls for action dating to the 1990s and early 2000s. In 2012, the U.S. National Institutes of Health recommended a name change after experts concluded the name PCOS was a confusing "distraction" for both patients and providers.

"The name focuses on a criterion — polycystic ovarian morphology — which is neither necessary nor sufficient to diagnose the syndrome," NIH experts wrote in the report.

The old name implied that people with PMOS have many abnormal cysts on their ovaries, Teede explained. When the condition was first described in the 1930s, doctors physically examined patients' ovaries during operations and noticed "they looked lumpy and bumpy, like they had cysts on them," she said. "But a true abnormal cyst has a particular type of lining and behaves in a certain way."

Known as "pathological noncancerous ovarian cysts," those types of cysts can grow larger, rupture, bleed and cause pain, and they can require surgery to treat. Teede and other researchers have found that PMOS patients aren't more likely to have these pathological cysts than people without the condition. Rather, they often have a large number of "arrested follicles," meaning eggs that have failed to fully mature within the ovaries due to the syndrome's hormonal effects.

In short, the term "polycystic" is incorrect, because arrested follicles are not cysts. What's more, the focus on ovaries ignores the disruptions in multiple hormones that drive downstream issues with metabolism, weight, reproduction, the skin and mental health.

Up to 70% of people with PMOS are undiagnosed, estimates suggest, and part of that diagnostic gap may stem from misconceptions about what the condition actually is. Over the years, surveys have repeatedly suggested that both doctors and patients find the name PCOS confusing and often think abnormal ovarian cysts are a key feature of the condition. In a recent survey, nearly 86% of patients and 76% of health professionals who responded agreed that the name should change.

Because the syndrome has largely been viewed as gynecological, research, funding and medical education has often focused on the reproductive aspects of PMOS. This has left knowledge gaps among doctors in other specialties, despite the condition impacting many bodily systems. The new name could also help to turn that tide, stakeholders think.

"We needed to move away from the inaccurate towards the accurate," Teede said of the new name.

A new name, at last

After the NIH issued its 2012 recommendation, a series of renaming efforts followed, but they each failed to gain traction. Experts recognized that a successful renaming would require international leadership, a democratic process to reach consensus, the inclusion of patient advocacy groups and a clear plan to roll out the new terminology.

In addition to asking whether the syndrome should be renamed, leaders of the effort asked whether the acronym should remain "PCOS," for ease of adoption, or if it was more critical for the name to accurately reflect the disease's features. The latter turned out to be more important to respondents, the organizers reported Tuesday (May 12) in The Lancet. The new name will also be announced in person on Tuesday at the European Society of Endocrinology Conference in Prague.

"We got a very strong vote for the first two terms, which is the 'polyendocrine' and the 'metabolic,'" Teede said. Weighing the word "ovarian" proved tricker, she said, but it was ultimately chosen because other terms, such as "reproductive," were seen as more stigmatizing.

"In many cultures, the worth or value of a woman is linked to her fertility," Teede said. "So, implying that women have a condition that might impact that is — it can be very harmful."

She added that, when diagnosed and treated appropriately, people with PMOS can often bear children and achieve the family sizes they want; it's when they go undiagnosed and untreated that fertility issues can get in the way, she said.

Some experts have suggested that, with this name change, there may be an opportunity to research a possible "male version" of PMOS. Some males have low levels of androgens that cause sparse hair growth and early balding, as well as some of the same issues seen in PMOS, such as insulin resistance, obesity and mental health problems.

For her part, though, Teede doesn't think there's enough evidence to call this phenomenon in males a form of PMOS, even though it shares some similar hormonal and metabolic features. It's "way too premature, based on the science," she said. "It's a different condition in that it doesn't have the same reproductive implications as it does in females."

As follow-up work, Teede and colleagues will work to tweak some of the language used in the diagnosis of PMOS. When examining ovaries on ultrasound, doctors look for what they call "polycystic ovarian morphology," but really, they're looking for signs of arrested follicles. So to align with the syndrome's new name, that terminology will need a change, too.

For those looking for accurate information about PMOS, Teede recommended the app AskPCOS, which will soon be renamed AskPMOS.