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Meet PCOS, the condition that's messing up so many women's lives

 By Silas Lyons, The Salinas Californian  |  September 20, 2017

Some women describe the experience as being at war with their own body.

Polycystic ovary syndrome (PCOS) is very common, affecting at least 5 million American women of child-bearing age, according to the Centers for Disease Control and Prevention. By one count, that’s more than breast cancer, rheumatoid arthritis, multiple sclerosis and lupus combined.

Yet even in Monterey County, where diabetes rates are high and are correlated with PCOS, the syndrome is not well known. Women and their doctors often get stuck trying to puzzle out symptoms like infertility and abnormal hair growth rather than seeing that those are part of a bigger picture, said Pete Chandler, an OB-GYN at Natividad Medical Center.

Chandler has been director of the OB-GYN group there for a decade, but he said it was just last year that he and his colleagues began to focus closely on PCOS. The group has eight doctors, including Chandler.

"There seems to be more and more women showing up with this," Chandler said. "As physicians, when we start looking at the implications of this on our patients, we're getting more and more sensitive on picking it up."

According to advocates who work in the field, Chandler and his colleagues are much farther along than most physicians.

It took Megan Stewart, founder of the PCOS Awareness Association, three consultations with different doctors before she was diagnosed as a teenager. That's typical, both she and Chandler said.

Asked how well doctors in general understand PCOS, Stewart, 32, of Manassas, Virginia, had a simple answer: "They don't."

And that's led to a serious lack of treatment. The most recent research, Stewart said, suggests that the rate of childbearing-age women affected by PCOS could be as high as one in five. That would be at least double what was thought before and would put the likely number of American women with the syndrome far above 5 million.

PCOS is named for the way it disrupts the reproductive system and is the most common cause of female infertility in America, according to the CDC. But that’s just the beginning of issues for women who live with it.

Problems start at the head, where facial hair growth and acne are common symptoms, as is male-pattern baldness. They continue throughout the body with a higher risk of obesity, irregular menstrual cycle, darkening of skin and development of skin tags – small excess flaps of skin in the armpits and around the neck.

Stewart said tooth decay also is common in women with PCOS.More serious issues may lie down the road, Chandler said, although he cautioned that the research is still lacking.

"These women are probably at very high risk for having cardiovascular disease later," he said. He noted that research shows more than half of women with PCOS will develop diabetes or pre-diabetes by age 40.

Women who live with it also report depression and anxiety.

"There's definitely an element of not being enough," said Amy Medling, 45, a health coach in Nashua, New Hampshire who first started noticing her own symptoms of PCOS when she was 14 years old. "Your sense of femininity is robbed, in a way. You've got this male-pattern hair loss, you're growing hair where you don't want it, you're having a hard time losing weight, and your fertility is out of reach.

"You're fighting with your body. It's sort of this idea that your body is betraying you."

Medling now runs a Facebook page called PCOS Diva that has more than 200,000 followers, and she's planning to publish a book about the syndrome next spring.

It’s not uncommon for women to first encounter the symptoms at a young age, experts say.

Pinpointing a cause has been equally frustrating. Genetics seem to play a part, according to research cited by the CDC. But so does weight, family history and insulin resistance — often in ways that leave patients and their doctors wondering what came first.

What is known is that insulin resistance is at the core of what PCOS is, and how it works.

Women with PCOS often don’t respond well to insulin, so their bodies just keep making more of it. The elevated insulin is then believed to increase the level of androgens — “male hormones that females also have,” according to the CDC — and that in turn blocks the release of eggs from the ovaries. That final step leads to the growth of the small and multiple cysts on the ovaries that give the syndrome its name.

The connection to diabetes makes it particularly important that women in Monterey County are aware of PCOS, Chandler said. According to a spokeswoman for Natividad, some 45 percent of residents already have pre-diabetes and 25 percent are considered obese.

Most medical sources say it's very important for women with PCOS to eat a diet rich in nutrients and whole foods, and to control their weight. Even a 10 percent reduction in weight can bring back a regular period, Medling said.

She urges women to start "thinking like a diva" about their diet — meaning to be very picky and intentional about the food they buy and eat.

"Approaching our diet and changing our lifestyle is really a radical act of self-care," she said. "Make your grocery list and shop for what you need. Realize you deserve it."

But before managing PCOS, a woman has to know what she's dealing with. Chandler said it's particularly important to be assertive.

"You want to bring up the possibility that you have PCOS to your physician," he said. "Go somewhere that appreciates the long-term ramifications of this (and doesn't) just focus on the immediate desire to get pregnant, the hirsutism, the abnormal bleeding."

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