Many women battle little-known disease

It took about two years for doctors to diagnose Tracy Montarti's illness.

She had complained of an irregular menstrual cycle, lack of energy, weight gain and a patch of dark skin under her neck. No one had any answers.

"I was very frustrated," said Montarti, 32, of Dormont. "I could tell I had some sort of hormonal problem, but no one would listen to me."

When a new doctor connected her symptoms, Montarti was diagnosed with a gynecological disorder known as polycystic ovarian syndrome. It's a disease that women often talk about in whispers because of its embarrassing symptoms — abnormal menstruation, excessive hair growth on the face and body, weight gain and depression. Doctors say the mix of symptoms has baffled them for years.

Now, researchers are starting to learn more about the condition, and they are finding alarming links to serious problems such as diabetes and cardiovascular disease. They say 5 to 7 percent of women might have the disorder. Continuing studies at the University of Pittsburgh Graduate School of Public Health show that about 10 percent of women of reproductive age in western Pennsylvania could have the disease.

Montarti, whose doctor settled on the illness after an ultrasound revealed tiny cysts in her ovaries, is now president of the local chapter of the Polycystic Ovarian Syndrome Association. Along with Pitt, the 100-member advocacy group is sponsoring a one-day conference about the disease on Oct. 26. Montarti wants women and doctors to share what they know about a disease that often leaves women feeling helpless and hopeless.

"There was a time when doctors were not paying attention to this disease; and it can lead to diabetes and heart disease, and that is unacceptable," Montarti said.

Polycystic ovarian syndrome happens when, for reasons that aren't clear, a woman overproduces insulin, the protein hormone that helps the body process sugar. That in turn leads to high levels of male sex hormones such as testosterone, which disrupt the menstrual cycle and trigger symptoms such as extra body hair, baldness, obesity and dark skin patches.

Jeanne Zborowski, a Pitt researcher who's been studying polycystic ovarian syndrome, said the disease has been overlooked for years because women — and unsuspecting family doctors — often brush off the symptoms.

"They may not often recognize that this is more complex than just having irregular menstrual cycles," Zborowski said.

The disorder is named after one of its tell-tale symptoms — tiny cysts caused when follicles in the ovaries are unable to grow and cause the ovaries to become enlarged.

Research at Pitt, financed by a $2 million grant from the National Institutes of Health, is shedding light on the seriousness of the disease. Researchers are following 320 women, half of whom have polycystic ovarian syndrome.

Preliminary results show 60 percent of women with the disease have developed calcification in their coronary arteries, compared to 35 percent of the women who don't have the disease. Clogged arteries can put a person at risk of a stroke or heart disease.

Dr. Mary Korytkowski, director of Pitt's Center for Diabetes and Endocrinology, said not all patients who have polycystic ovarian syndrome have the same symptoms. For example, not every woman experiences weight gain or hair growth.

"There are a lot of misconceptions about PCOS, and I've had women tell me all kinds of things," she said. "One woman told me she talked to her doctor about hair growth, and he said to her, 'What do you expect• You're Italian.'"

To treat the disease, doctors frequently prescribe birth control medication that can regulate menstrual cycles.

"It creates its own hormonal environment, but it shuts down ovulation," Korytkowski said. "It (the birth control) quiets down the ovaries, which are overproducing the hormones."

Women also can be treated with diabetic medication that can regulate their insulin levels. That option is growing in popularity because, unlike birth control pills, the medication doesn't interfere with ovulation.

Doctors also are encouraging women with the disease to exercise and change their diets to stave off weight gain and other complications. That's what Eletta Cameron of Munhall did. For her, the disease caused headaches, acne and extra pounds.

"With PCOS, it's more difficult to get weight off," said Cameron, 28, a social worker. "I was always tired, and that was frustrating."

She cut out meat from her diet, began eating more fish and hired a personal trainer. She said she feels blessed because her symptoms haven't become worse.

"I think this has affected me in a positive way because I want to help empower other women," Cameron said. "Women need to really listen to their bodies so they can tell their doctors what's going on. If a doctor is not willing to listen, then they don't deserve your money and you should start looking for a better doctor."