A hormonal disorder that affects as many as 5 million American women may receive a new name, and many doctors and patients who have the condition are supporting the idea, even though no new name has been selected yet.

A panel of experts convened by the National Institutes of Health said today (Jan. 23) that polycystic ovary syndrome (PCOS) should be renamed. The current name is confusing, the panel said, because women don’t need to have ovarian cysts to have PCOS, and the presence of cysts alone is not enough to diagnose the disorder. In some cases, such confusion may delay a diagnosis of PCOS.

“The name PCOS is a distraction that impedes progress. It is time to assign a name that reflects the complex interactions that characterize the syndrome,” panel member Dr. Robert A. Rizza, a professor of medicine at the Mayo Clinic, said in a statement. “The right name will enhance recognition of this issue and assist in expanding research support.”

Polycystic ovary syndrome is caused by imbalances in sex hormones, including the female hormone estrogen and the male hormone androgen. Women with PCOS can experience menstrual irregularities, cysts on the ovaries, acne, weight gain and difficulty getting pregnant. The condition also increases the risks of Type 2 diabetes, high cholesterol and high blood pressure. [See Acne in Women Can Signal Hormone Problems.] Because so many symptoms are associated with the syndrome, unsuspecting women may first visit a gynecologist, a dermatologist, or an internist.

Lisa Benjamini-Allon, founder and president of the PCOS Foundation,  a patient advocacy organization, said she felt a name change is necessary. The current name “doesn’t do the syndrome justice for what it is,” Benjamini-Allon said. A lot of women who are diagnosed with PCOS say they feel the name should be changed because it doesn’t capture the difficulties associated with the condition, she said. (If the name of the condition were changed, Benjamini-Allon said her organization would probably have to change its name as well.)

Liz Medcalf, a PCOS patient from Frostburg, Md., said she likes the idea of a name change. Medcalf was not told she had PCOS until after she underwent a hysterectomy at age 42. “I think the current name poorly reflects the entire disease and probably played a part in my late diagnosis,” Medcalf said. In her 20s, Medcalf developed symptoms of the condition, including irregular periods, weight gain, and facial and body hair, she said. Her hysterectomy was a treatment for endometriosis.

Patients themselves may have misperceptions about their disorder because of the name.

“Patients read into the name and just think, ‘Okay, this is about my ovaries, it’s really not about anything else,'” said Dr. Melissa Goist, an obstetrician and gynecologist at Ohio State University’s Wexner Medical Center. But from a doctor’s perspective, the most worrisome aspects of the disorder are the long-term consequences, such as diabetes, Goist said.

Patients also may believe they cannot become pregnant with the disorder. While pregnancy with PCOS can be more difficult, it is by no means impossible, Goist said.

Some patients expressed frustration with a lack of recogniction of the disease in the wider medical community. Dionne, a PCOS patient in Boston, said that on many occasions, she had to explain her condition to her health care provider. “They don’t fully know what it is … unless they’re working with it,” Dionne said. “I think a better name would be helpful in terms of communication,” between doctors and patients, Dionne said. Dionne did not want her full name used for privacy reasons.

However, not everyone agrees with the idea of a name change.

“Although the terminology is not entirely accurate, I believe it is a mistake to rename the syndrome,” said Megan Joyce, an acupuncturist in Los Angeles who has PCOS. “A community of women has formed around the term ‘PCOS’ that provides support, advice and solidarity. I believe finding a new name would create stratification within the community that would lend confusion to an already confusing medical condition.”

Although the NIH panel members did not offer a new name, they said it should be a broader name that recognizes the condition’s other features, including infertility and an excess of androgen hormones.

The panel hoped it would be possible to assemble a group, including representatives from professional societies and patient advocacy organizations, to decide upon a new name, said panel member Dr. Timothy Johnson, chairman of the Department of Obstetrics and Gynecology at the University of Michigan. In theory, this could be a quick process, Johnson said.

The panel also recommended additional research to understand the underlying causes of the hormonal imbalance, as well as factors that can trigger the disease or make it worse.

Pass it on: Many doctors and patients think polycystic ovary syndrome, or PCOS, should have a new name.

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