Jan 24, 2013 6:34 PM
Jan. 24, 2013 -- What's in a name? If it's polycystic ovary syndrome, a lot of confusion, says a panel of experts convened by the NIH -- and they're calling for a change.
Polycystic ovary syndrome (PCOS) is one of the most common endocrine disorders, affecting about 1 in 10 women in the U.S. It's also a major cause of infertility. But as doctors have learned more about the complex condition, they've changed the way it's diagnosed. As a result, a woman doesn't necessarily have to have polycystic ovaries to have PCOS.
What's more, for many women, the consequences of the disease extend beyond the ovaries. Recent research suggests PCOS may set women up for a variety of long-term health problems, including type 2 diabetes, high blood pressure, high cholesterol, heart attacks, and perhaps some kinds of cancers.
The current name, experts say, doesn't adequately reflect that.
"It does have a branding problem in the sense that people assume that it's all about obesity; people assume that it's all about diabetes; or people assume that it's all about polycystic ovaries," says Ricardo Azziz, MD, MPH, MBA, an obstetrician-gynecologist who specializes in PCOS. Azziz testified before the NIH panel. He's also president of Georgia Regents University in Augusta.
Currently, no one medical specialty claims PCOS. That makes it tough to get funding for research. It's also difficult to educate patients and doctors about the serious and sometime long-term consequences of the syndrome.
Women with PCOS don't ovulate regularly. They also overproduce or are overly sensitive to male hormones, like testosterone. The result is a collection of symptoms that can seem unrelated. Those may include:
Recent research has suggested that, at least for some women with PCOS, the hormone insulin may lie at the root of these problems. Some women with PCOS are resistant to insulin's effects. That puts them at higher risk for problems like type 2 diabetes, high cholesterol, high blood pressure, and perhaps heart attacks and cancers of the reproductive organs.
"The current name focuses on only one of the criteria and actually doesn't include a discussion about the metabolic syndrome and the metabolic consequences, the insulin resistance, and some of the other major issues that could be lifelong issues that people who have this disease or this series of diseases might have," says panel member Timothy Johnson, MD. He is an obstetrician-gynecologist at the University of Michigan in Ann Arbor.
"Our hope was that a group or some group of people who are interested in the condition could come together very, very quickly and simply pick a name that is more inclusive," Johnson says.
Other experts say that's easier said than done.
"This is not a new idea," says Sarah Berga, MD, an obstetrician-gynecologist at Wake Forest Baptist Medical Center in Winston-Salem, N.C. Berga has spent her career studying PCOS, and she says she tried to give it a new name about 20 years ago. "I changed it to hyperandrogenic anovulation," she says.
"We published one of our really most important papers under that name," Berga says, hoping the change would catch on. The result? "No one knows it exists. You can't search it."
"What happens is that the name may not be everything you want it to be, but it's how all of the world, unfortunately, thinks about it," she says.
"To reeducate people is a huge task," she says. "I love it. I agree with [a name change for PCOS]. But I wonder how really feasible it will be."