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Aug. 23, 2007 -- It is the leading cause of female infertility, but most women with polycystic ovary syndrome (PCOS) never know they have the disorder until they try, and fail, to get pregnant.
Now a new review of the research predicts that more and more women will develop PCOS as obesity becomes a bigger problem throughout the world. Obesity can be a sign of PCOS, and being obese exacerbates other manifestations of PCOS like infertility and insulin resistance.
PCOS researcher Robert Norman and colleagues from South Australia's University of Adelaide made the prediction in the Aug. 25 issue of the journal The Lancet.
Current estimates vary, but it is believed that up to one in 10 women in the U.S. and one in 15 women worldwide suffer from PCOS. The cause of PCOS is not known, but it is thought that genetics and environmental factors may be involved.
Many, like 34-year-old Kelly Holton, spend many frustrating years searching for answers before they are finally diagnosed.
Holton, who lives in Atlanta, says she knew there was something very wrong when she reached puberty at the age of 11. Her periods were wildly irregular from the start, occurring as infrequently as one or two times a year.
Puberty also brought on dramatic weight gain, and she was unable to lose the weight despite her best efforts.
She was 19 years old when a gynecologist told her she had two options for her infrequent and very painful periods: take birth control pills or have a hysterectomy. PCOS was never mentioned.
"I didn't opt for the hysterectomy," she tells WebMD. "I took birth control pills for years, and that masked the symptoms to some degree."
She says she first learned about PCOS six years later when her mother read about the disorder in a women's magazine.
"She called me and said, 'Go buy this magazine. This article describes you,'" Holton says. "I read it and the symptoms were so familiar. I was able to connect the dots for the first time."
In addition to being overweight and having irregular periods, Kelly had many of the classic PCOS symptoms, including excessive body hair and dark patches of skin under her arms.
Through the magazine article she found a local infertility doctor who specialized in treating PCOS. He put her on the drug metformin, which helps regulate blood sugar. She also joined Weight Watchers and began a regular exercise program.
"Having the diagnosis made a huge difference," she says. "Before that I'd been told the only reason I didn't get my period was because I was overweight. Learning that my body worked differently helped me make the changes I needed to make."
She lost 97 pounds over the next three years and has managed to keep the weight off. Her periods are now more regular than they have ever been.
Although Holton's weight loss was dramatic, studies show even modest weight loss can have a big impact on infertility, insulin sensitivity, and other PCOS symptoms.
In a 1999 investigation, Norman and colleagues from the University of Adelaide reported that a 2% to 5% reduction in body weight was sufficient to restore ovulation and increase insulin sensitivity by 71% in obese women with PCOS.
In their review, they cited other research that concluded that modest weight loss is more effective than metformin and other insulin-regulating drugs for treating infertility and other PCOS symptoms.
Carolyn Alexander, MD, of Cedars-Sinai Medical Center, who specializes in treating women with PCOS, is very familiar with the impact of lifestyle change.
"I see it all the time," she tells WebMD. "Modest decreases in weight have a huge impact on fertility. Women who lose 5% of their body weight end up coming in pregnant."
Alexander says she also routinely sees patients who, like Holton, spend years searching for a diagnosis to explain their symptoms.
"They are often very frustrated by the time they see me," she says. "There is more awareness of PCOS in the medical community, but it has been slow."
Holton hopes that greater doctor and community awareness about PCOS will lead to earlier diagnosis of young girls with the disorder.
"My message would be, if you feel there is something wrong with your body, you're probably right," she says. "It may take time to get someone to listen to you, but keep trying."