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As PCOS cases jump, doctors wonder if the disorder is over-diagnosed

Polycystic ovary syndrome can cause facial hair and weight gain. But there's concern healthy women are being labeled with the condition.
/ Source: TODAY

If you were to create a list of health problems that can be particularly tough on a woman’s body and soul, polycystic ovary syndrome would surely loom large.

Triggered when a woman produces more male hormones than normal, the symptoms can be unsettling: weight gain, acne, facial hair, irregular periods, pelvic pain and infertility.

One PCOS patient posted a photo of herself shaving her face with a razor — a regular part of her morning routine.

“Do you know how UNFEMININE this can make a woman feel?!? I've always been super self-conscious about it,” Tina Beznec, 27, wrote last year.

But some doctors are concerned PCOS may be over-diagnosed, unnecessarily labeling healthy women with the condition and worrying them needlessly. An analysis by Australian and American experts, published this month in the BMJ, urges doctors to treat the symptoms, but avoid making a diagnosis, particularly for teens and women with normal hormone levels, because the PCOS label “might cause fear and anxiety.”

What’s the big deal?

At the heart of the debate is the decision to expand the criteria for diagnosing PCOS. Doctors once focused on two main symptoms in women: High levels of male hormones and irregular periods.

In 2003, experts added a third symptom to the mix: cysts on ovaries, as seen on a sonogram. Now, any two of the three symptoms mean a PCOS diagnosis. The expanded standard contributed to a huge jump in the number of younger women being diagnosed: from an estimated 4-6 percent to 21 percent, the analysis notes.

It also created a category of women who were told they had PCOS just because it looked like they had cysts on their ovaries and they experienced irregular periods, said Dr. Rhoda Cobin, clinical professor of medicine at the Icahn School of Medicine at Mount Sinai in New York and past president of the American Association of Clinical Endocrinologists.

“That’s where the difficulty lies,” Cobin said. “I personally happen to side with the folks who talk about that category as being ‘Hmm, is that really PCOS?’… I believe that it may be over-diagnosed.”

Why some doctors are concerned:

Healthy women can experience PCOS symptoms, the BMJ analysis notes.

Many young women and teens have ovaries with lots of cysts on them and that’s probably developmental or related to not ovulating — not necessarily PCOS, Cobin said. It’s also “super common” for girls and young women to have irregular periods because of anorexia, too much exercise, psychological stress, thyroid disease and more, she added.

Cobin would rather see doctors use signs of hyperandrogenism, or too many male hormones, as key evidence of PCOS: “Then, the diagnosis isn’t so difficult,” Cobin said. Hyperandrogenism is probably what links it all together, she added.

Why it matters:

Women with PCOS are at higher risk of diabetes, heart disease, high blood pressure and stroke. But those risks have been mostly observed in patients with high levels of male hormones, Cobin noted.

Do the women in that uncertain category — those with the irregular periods and cysts on ovaries — have the same risk? Perhaps not. A number of studies seem to suggest that if a woman is lean, doesn’t have a family history of diabetes and has normal hormone levels, her risk isn’t so great, Cobin said.

Yet, because she’s been labeled as a PCOS patient, she may read about the condition and become anxious and worried.

What you should do if you’re diagnosed:

It’s fair to question the diagnosis — not in a confrontational way, but by asking your doctor lots of questions: “How do you know?” “What does this mean for me later in my life?” “What are my risks?”

If there’s any doubt, see an expert — an endocrinologist who is very familiar with the situation, Cobin suggested. Dr. Anuja Dokras, director of the PENN PCOS Center at the University of Pennsylvania, sees many patients for a second opinion and they often do not meet the criteria for PCOS, she said. Dokras is a co-author of the BMJ analysis.

When it comes to young women and adolescents, patients should know that sometimes doctors really aren’t sure if it’s PCOS, Cobin noted. Doctors should also be willing to say: “She’s only 16 right now; let’s see how things go when she’s 19 or 20,” she added.

In the meantime, get lots of exercise and strive for a healthy weight, because obesity amplifies the effects of PCOS on diabetes, high blood pressure, heart disease and stroke, Cobin said. If you have irregular periods, there are many different treatments, depending on the cause.

Be aware that PCOS may be “transitory” for many women — the symptoms just go away after age 25, the BMJ analysis noted.

Next year, new internationally accepted guidelines, including diagnosis, will be published, Dokras said.

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