Why Is PCOS Hard to Diagnose?

Doctors are learning more about how polycystic ovary syndrome affects women.

Medically Reviewed by Brunilda Nazario, MD on February 18, 2016

As many as 15% of women have polycystic ovary syndrome (PCOS), a group of symptoms including irregular periods, excess facial hair, acne, and trouble conceiving. Left unchecked, it can lead to type 2 diabetes and a higher risk of endometrial cancer.

Yet 80 years after its discovery, no one has a definitive test to diagnose it, a cure, or a total agreement on what causes it.

"We are not doing enough to understand this," says Richard Legro, MD, lead author of a recent Endocrine Society statement calling for more research into the condition.

Women's symptoms can be very different, making diagnosis tough. Even the name is controversial -- many with PCOS have excess cysts on enlarged ovaries, but some don't.

Doctors once considered the condition to be an ovary disorder. Inside a healthy ovary, one of several fluid-filled sacs (or follicles) swells, ruptures, and releases an egg each cycle. For some women with PCOS, that process gets repeatedly interrupted before the egg is released, leaving undeveloped follicles, or cysts, "lined up at the starting line," Legro says.

Researchers began to wonder if these cysts were just one symptom of a more complex hormonal problem, which also tends to be accompanied by excess male hormones and insulin resistance. Some believe obesity causes PCOS. Others suspect obesity just makes it worse for women whose genes raise their odds of getting polycystic ovary syndrome.

To be diagnosed, a woman has to have two of three signs: Evidence of excess male hormones, irregular periods, and 12 or more cysts on the ovaries. Some doctors use ultrasound and blood tests, but many diagnose based on symptoms alone.

Here are a few questions to ask your doctor:

1. How often does a woman with PCOS get a period? If it's fewer than eight times per year, that may be a sign.

2. What if I want to get pregnant? Some PCOS treatments prevent pregnancy -- others promote it.

3. What treatments can help with my most bothersome symptoms? But note that no treatment addresses all symptoms.

4. Could it be something else? Thyroid disorders, adrenal hyperplasia, and Cushing's syndrome all have similar symptoms.

Treatment varies. "We may not have one fix for the underlying problem, but we do have tools to address individual symptoms," says Heather Huddleston, MD, director of the University of California, San Francisco PCOS Clinic.

Doctors might prescribe contraceptives taken by mouth to a younger woman with the condition who says she has acne and is uninterested in becoming a mother anytime soon. For a woman showing signs of insulin resistance, diabetes drugs might be used. For someone concerned about infertility, doctors might prescribe meds to promote ovulation.

"PCOS is one of the most treatable forms of infertility," Huddleston says.

Will there ever be a pill for the condition? Research is underway. But Legro and Huddleston say a more likely scenario is that the catch-all term "PCOS" will go away, replaced by a more fitting name, or names, each with a distinct solution.

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Richard Legro, MD, professor, department of obstetrics and gynecology at Pennsylvania State University College of Medicine, Hershey, PA.

Heather Huddleston, MD, director, University of California San Francisco PCOS Clinic.

Legro, RS. Endocrine Reviews, October, 2015.

Legro, RS. J Clin Endocrinol Metab, 2015.

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