Millions of Women Have PCOS—Here's How to Spot It and What to Do Next

PCOS is the main cause of infertility in women, and thanks to new research doctors may now know how to cure it.

Doctor Explaining PCOS Symptoms
Photo: KidStock/Getty Images

As with many medical conditions, most people only become aware of a disorder or illness if they get diagnosed with it themselves.

Even though polycystic ovary syndrome, or PCOS, affects up to 5 million women a year, it's a surprisingly invisible illness. People just don't really talk about it.

A study published on Monday, May 14, in Nature Medicine, however, threw PCOS into the limelight because, for the first time, a root cause of the condition may have been found. The implications of the paper are far-reaching, as it claims to show not only why and how some women develop PCOS but also the possibility of a cure.

Dr. Margrit Urbanek, a scientist at Northwestern University with an expertise in the genetics of PCOS, told me, "Up to now, most of the treatment for PCOS has been sort of based at symptom treatment ... so maybe this will be sort of a new paradigm for treatment."

In light of the recent developments and to catch you up to speed, here's everything you need to know about polycystic ovary syndrome.

What Is PCOS?

Polycystic ovary syndrome—also known as polycystic ovarian syndrome—occurs when a woman's ovaries or adrenal glands produce more male hormones, like testosterone, than normal, leading to a hormonal imbalance. According to the U.S. Department of Health and Human Services, PCOS can cause cysts to develop in the ovaries as well as infertility by disrupting a woman's ability to ovulate by preventing egg development or release during menstruation.

What Are the Telling PCOS Symptoms?

To be diagnosed with PCOS, you need to have two of the following three symptoms: irregular or infrequent periods, higher levels of male hormones (androgens) than normal, and cysts on your ovaries, which can be detected by an ultrasound.

While the most noticeable of those symptoms is probably experiencing irregular or fewer than eight periods a year, those with polycystic ovarian syndrome might be clued in to their hormonal imbalance if they have hair growing in unexpected places, like their faces or other areas more typically associated with male hair-growth. This symptom actually has its own name because it's so common (70% of women with PCOS experience it): hirsutism.

Persistent acne, hair loss, and weight gain or trouble losing weight also could be indications of PCOS. Two other common manifestations of the hormonal imbalance are darkening areas of your skin, like along neck creases and the groin, and the development of skin flaps on your armpits or neck.

Many women, however, only notice something is wrong and get diagnosed when they have trouble conceiving.

These PCOS signs may be easy to spot without a deeper examination, but Dr. Urbanek stressed the importance of getting a thorough evaluation of your symptoms, including hormone testing to confirm the diagnosis.

What Causes Polycystic Ovary Syndrome?

The exact cause of PCOS, while strongly linked with genetics, has been somewhat enigmatic, but the new study published Mondaygives women with the hormonal condition a little more insight. Researchers lead by Dr. Paolo Giacobini at the French National Institute of Health and Medical Research were able to link the health problem's origins to higher levels of something called the Anti-Müllerian hormone.

In the researchers' trials, they were able to show for the first time that lean pregnant women with PCOS have "significantly higher circulating AMH levels than pregnant women with normal fertility." The study went on to test their theories on pregnant mice, first injecting them with AMH to give their offspring PCOS, then treating it with a drug called cetrorelix, which is a medication in the GnRH antagonist class that's usually used to help women undergoing IVF regulate their ovulation.

The mice's PCOS symptoms went away after being administered the cetrorelix, which could have broad implications for healthcare. As the study notes, PCOS is the main cause, globally, of infertility in women, affecting 10-18% of women at reproductive age.

Dr. Giacobini, whose team wants to move to human tests by the end of this year, told New Scientist, "It could be an attractive strategy to restore ovulation and eventually increase the pregnancy rate in these women."

While Dr. Urbanek agrees that the treatment idea introduced here is a new and interesting concept, she added, "One of the cautionary tales of the paper, though, which they mention, is that this looks to be specific to lean PCOS women, so it's not going to work for all women with PCOS and it may be sort of more reproductive than metabolic."

By "metabolic," she means the health issues of PCOS outside of infertility, like insulin resistance or obesity.

What Should You Do If You Think You Have Polycystic Ovary Syndrome?

If you think there's a chance you may have polycystic ovary syndrome, you should consult your health care provider even if you're not trying to get pregnant any time soon.

PCOS puts people at risk for subsequent medical conditions besides infertility. As the Centers for Disease Control explains, women with PCOS have trouble processing insulin, which makes developing Type 2 diabetes more likely. PCOS is also linked to other weight-related health issues like obesity, sleep apnea, heart disease, high blood pressure and metabolic syndrome. In addition to this list, PCOS can cause mood disorders, thickening of the uterus lining, and endometrial cancer.

How Is PCOS Diagnosed?

Your doctor might perform pelvic or physical exams, blood tests, and/or an ultrasound to examine your ovaries and uterus lining to try to determine if you have the condition.

While there is no cure for the condition at this time and some women with PCOS need medical assistance getting pregnant, many other PCOS symptoms are treatable with diet and lifestyle changes as well as some medications like birth control pills and Type 2 Diabetes treatments.

If you do have PCOS or know someone who does, stay up-to-date on Dr. Giacobini's research because whether or not a cure is on its way, the research provides a new look at the condition and a promising sign that more attention is getting paid to PCOS.

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