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Puzzling condition humiliating to many women

Polycystic ovary syndrome  now affects one in 15 women worldwide, but as obesity rates increase, so will cases of PCOS, according to a recent review by Australian researchers.
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During her sophomore year of high school, Jennifer Robidoux noticed a series of strange things happening to her body. She gained 35 pounds in one year. Thick, dark hair started to sprout from her chin, cheeks and stomach, and her period stopped for six months.

“It was very hard to face my friends. I hated going to school,” says Robidoux, who’s now 28 and lives in Blackstone, Mass. “I remember waking up and telling my mom, ‘Homeschool me!’”

Two years later, Robidoux learned she had polycystic ovary syndrome, a condition that stops regular ovulation, triggers an increase in masculinizing hormones and is a leading cause of infertility. PCOS gets its name from the small ovarian cysts commonly seen in patients. The syndrome now affects one in 15 women worldwide, according to a recent report by Australian researchers. The report predicts that as obesity rates increase, so will cases of PCOS.

While the exact cause of PCOS isn’t clear, obesity is a major risk factor for the condition, says Robert Norman, one of the authors of the review recently published in the medical journal The Lancet.

“It’s a condition that’s relatively silent when you’re thin,” says Norman, director of the Research Centre for Reproductive Health at the University of Adelaide, Australia. “But as people go from being thin to being overweight, it suddenly becomes visible.”

Insulin overload
Researchers think that as some women gain weight, their bodies experience a sort of insulin overload, which increases production of male hormones known as androgens.

Visible symptoms of PCOS include acne; excessive hair growth on the face, chest, stomach and other unexpected areas; male-pattern baldness; weight gain; patches of thick, dark brown skin; and tiny extra flaps of skin in the armpits or on the neck. For women with the condition, it can be humiliating.

“Not only is it embarrassing, it hurts psychologically,” says Christine DeZarn, who was diagnosed with PCOS 16 years ago. “It attacks everything that makes a woman feminine.”

PCOS can also lead to long-term health risks such as an increased chance of developing diabetes, high blood pressure or cancer. But many women who have PCOS symptoms go undiagnosed. Because the symptoms are so embarrassing, many women do as much as they can to hide it — and they never consider mentioning any of it to their doctor.

DeZarn was having trouble getting pregnant, so at age 27, she visited her doctor to figure out the problem. She’d noticed that she’d gained some weight and was suddenly growing facial hair, but she never connected these issues, so she didn’t mention them to her doctor.

“In my mind, that was a cosmetic thing,” says DeZarn, who’s now 43 and lives in Atlanta. “It had nothing to do with anything medical.”

‘A careful look’
Although it’s harder for doctors to diagnose PCOS if the patient doesn’t mention any of the symptoms, it’s still possible, says Dr. Richard Hellman, a clinical endocrinologist in Kansas City, Mo. It just requires some extra time and a closer look.

“Many doctors often are moving so quickly; they react to what people are coming into the office for and don’t take a careful look,” says Hellman, who’s also president of the American Association of Clinical Endocrinologists.  “Sometimes, if a person doesn’t want to bring it up, you can still see evidence of it.”

When DeZarn learned she had PCOS, she immediately started researching. But in the days before Google and WebMD, information was hard to find. She later started the Polycystic Ovarian Syndrome Association, a support group for women with PCOS.

“I wanted women to know that they were not alone, to end the sense of ‘freakishness’ and isolation that, ironically, characterizes this all-too-common condition,” DeZarn explains.

Hellman says for his patients, a PCOS diagnosis can be good news. All of these problems — the acne, the body hair, the changes in menstruation — are connected to a condition that is fairly common.

“When you understand it’s a problem — that it’s common, it’s not the mark of Cain — I think there’s a palpable sense of relief,” Hellman says.

While there is no cure for PCOS, the symptoms can be treated with birth control, fertility medications, diabetes medications and drugs to counter extra male hormones. But most important, healthy eating habits and regular exercise can ease the symptoms.

“Lifestyle changes are critically important,” Hellman says.

Those changes can help women avoid the serious health risks that can result from PCOS, and in a way, DeZarn is thankful for the heads-up that her diagnosis provided.

“PCOS can be looked upon as a gift. It is a clue that you need to make changes in your life,” DeZarn says. “By educating yourself about them, you have the ability to take control of this and to reverse and stop these symptoms from impacting your life in a negative way.”