Pushing for progress with PCOS

COLORADO SPRINGS, Colo. — Something, she knew, was wrong.

She had married the year before and was trying to get pregnant but couldn't. Her periods were irregular. She was packing on the pounds, and no matter what she did, they wouldn't go away. And suddenly hair was growing on her chin.

"These things were all happening at the same time, and I was very confused," Christine Gray DeZarn recalls. "I thought I was possessed or something."

Doctors didn't connect the problems, and neither did she — until she participated in an online forum on fertility problems and came across a woman describing symptoms of polycystic ovarian syndrome, or PCOS.

"I immediately identified with everything she had," DeZarn says.

A tough diagnosis

That was 11 years ago. Since then, doctors have learned much about polycystic ovarian syndrome, a hormonal disorder that affects as many as 10 percent of women of child-bearing age. But it remains an elusive diagnosis.

"The average patient sees five medical practitioners before getting diagnosed," says Dr. Steven Foley, with Advanced Gynecology in Colorado Springs, Colo.

There is no single lab test that can absolutely diagnose the condition, he notes. Many of the symptoms, such as weight gain and irregular cycles, are associated with other issues. And symptoms can vary depending on whether a woman has "classic" PCOS or other forms that are now recognized.

"I don't think a lot of doctors see it as being a huge problem," Foley says.

But attitudes are changing. The American Association of Clinical Endocrinologists issued a statement in late 2004 warning that women with PCOS are at increased risk of diabetes and heart disease. Physicians, the group said, should no longer regard women with PCOS as suffering only from infertility or "annoying cosmetic complaints."

DeZarn helped craft that statement in her role as founder of the nonprofit Polycystic Ovarian Syndrome Association, which she started to provide information and support for others with PCOS. The Castle Rock, Colo., woman says better recognition of PCOS as "a non-blame situation" is needed.

"A lot of doctors, especially older ones, they'll see someone come in who's overweight, and they'll just admonish them, 'You have to lose weight.' " But traditional weight-loss methods, she says, may not work.

The insulin connection

Information

The Polycystic Ovarian Syndrome Association: www.pcosupport.org

Soulcysters: an online community of women with polycystic ovarian syndrome: www.soulcysters.com

National Women's Health Information Center: www.4woman.gov/faq/pcos.htm

PCOS involves a resistance to insulin, which the body's cells use to take in the sugar they need. The body compensates for insulin resistance by increasing insulin levels. That ends up stimulating a woman's production of androgens, hormones associated with male characteristics such as hair growth.

There are several tests — including checks of hormone and insulin levels — that can help confirm PCOS. An ultrasound can detect ovarian cysts, but despite the name of the condition, women with PCOS can have ovaries that appear normal, and women can have cysts without having PCOS.

Foley also favors a specific cholesterol test, the VAP Test, as a screening tool; research indicates a correlation between PCOS and low levels of HDL2, a subclass of HDL, the "good" cholesterol.

The connection to insulin resistance was just beginning to surface when DeZarn, after comparing notes with other women, blazed her own trail in developing a treatment.

She began following a low-carb diet and convinced a doctor to put her on Glucophage, or metformin, which is used to treat type 2 diabetes. Since then it has become an increasingly common treatment for PCOS, helping to restore regular menstrual cycles and easing other symptoms.

Dr. Paul Magarelli, director of the Reproductive Medicine & Fertility Center in Colorado Springs, adopted the use of Glucophage as a standard of treatment for PCOS a few years ago. It's a big change from more-intrusive treatments of the past.

"Ten years ago, we were chopping up the ovary," Magarelli says. Part of the ovary was removed through a surgical procedure called an ovarian wedge resection, which resulted in a reduction of androgens.

Glucophage is a "glucose-eater," Magarelli says. "It robs the bloodstream of glucose so the pancreas doesn't secrete insulin."

But it can take many months before results, and the medicine can cause gastrointestinal upset, he says.

Diet management

Foley combines Glucophage with a low-carb diet similar to the popular Zone diet created by Barry Sears, which DeZarn continues to follow.

"I'm convinced the appropriate diet is so important," Foley says.

The diet — DeZarn calls it a lifestyle — is something a woman with PCOS should remain on indefinitely, Foley says. He seeks to wean patients off Glucophage once they reach their target weight, but adds, "That's a huge question as far as how long do they take it."

Foley diagnosed Christina Toliver with PCOS about a year ago and put her on Glucophage. Toliver had struggled with weight and fertility issues.

"I tried to diet before, not realizing I had this problem, and I couldn't lose weight," says the 23-year-old Toliver. And as soon as I got on the Glucophage, it was helping me lose weight."

Toliver stays away from sugar-laden foods and drinks such as candy and regular soda, but isn't following a strict diet, she says.

She is still trying to get pregnant. Foley recently started her on Clomid, an ovulation-inducing medicine. "I'm just going to be patient," she says.

DeZarn has never gotten pregnant, and now that she's 42, "I've kind of given up on that," she says.

But, she adds, "I do feel really good. My weight's under control, I feel healthy, I have regular cycles.

"I think I am what I would call successfully managed PCOS."