What is PCOS? We Break Down All the Myths Around Polycystic Ovary Syndrome

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Glee star Lea Michele revealed last fall that she has struggled with polycystic ovary syndrome (PCOS), which she says is to blame for her chronic acne and recent weight gain.

“I went to a great doctor, and the minute she looked at me, she was like, ‘Oh, you have PCOS,’” she told Health in September. “It explained everything. Through diet, I have been able to manage it. But I am very fortunate. There are way more extreme versions of PCOS that women have a lot of difficulty with—mine is not as intense. Which is why I haven’t really talked about it, because there are women who have it so much more intense.”

Michele isn’t alone in living with PCOS. The incurable condition affects one in 10 women.

But what is PCOS, exactly? PCOS is a hormonal imbalance, causing problems with ovulation and metabolism. Experts say many misunderstandings surround PCOS, starting with the condition’s name.

“PCOS is a misnomer,” says reproductive endocrinologist Jennifer Glueck, who is a member of the American Association of Clinical Endocrinologists.

“PCOS actually has nothing to do with cysts in the ovary,” she explains. “The disordered ovulation pattern can lead to a typical appearance of the ovary on an ultrasound that is termed ‘polycystic,’ but these are actually follicles or eggs in the ovary and not cysts.”

Interested in learning more? Here's everything you need to know about what PCOS actually is, treatment options, and more.

What is PCOS?

PCOS is primarily an endocrine condition with a variety of symptoms including gynecological issues, Glueck explains.

The disorder involves an imbalance of two hormones: testosterone and insulin.

Testosterone is not just a “male hormone,” Glueck explains. Women produce it naturally in the ovaries, along with estrogen, and even a small change in testosterone levels creates many “bothersome symptoms in women.” Women with PCOS have elevated levels, causing irregular periods and decreased ovulation.

PCOS patients also have insulin resistance, Glueck says, “The testosterone and insulin issues are related, because if the body has resistance to a hormone, it responds by making more of it. Higher insulin levels in women with PCOS then circulate and tell the ovary to make more testosterone.”

The insulin-resistance also causes metabolic issues, including increased rates of Type 2 diabetes, especially in overweight and obese women with PCOS.

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PCOS is a Spectrum

Reproductive endocrinologist Carolyn Givens thinks of PCOS as a spectrum, where all patients experience symptoms differently.

“It’s not like, ‘OK, you either have it or you don’t,’” she says. “Women in the middle ovulate normally once a month—somewhere between every 24 to 35 days, they get a period. At the very far end is your PCOS patient who rarely gets a period, if ever, tends to have obesity and possibly has androgen excess.”

Androgens are a group of sex hormones, including testosterone, usually associated with maleness, but women have them too.

That’s what makes diagnosing PCOS so complex, Givens explains.

Patients and physicians alike often misunderstand PCOS, Glueck says. Sometimes hormone levels look normal in women with PCOS, so patients receive conflicting information about whether they have the condition.

“The majority of women go to several doctors before they get the correct diagnosis and even then, most feel very dissatisfied with the information they receive,” she says.

Cases may be diagnosed based on an evaluation of medical history, physical exam, blood test or ultrasound.

Related: 6 Celebrities Open up About the Realities of Living With PCOS

Who’s Most At risk for PCOS?

The exact cause of PCOS is unknown, but there are genetic links. Though, Glueck says it can be difficult to identify which family members have it since it affects everyone so differently.

A misconception is that weight gain causes PCOS, she says. While untrue, for someone with PCOS, gaining weight may worsen the symptoms.

What Are the Symptoms of PCOS?

The higher testosterone and insulin levels disrupt ovulation, causing a range of symptoms like skipped periods, heavy periods, infrequent periods or stopped periods, Glueck says.

PCOS is not an infertility diagnosis, however, she says. Some women with PCOS have no problems getting pregnant, while others may take longer to conceive.

Acne, thinning hair on the scalp and extra hair growth on the body, like the upper lip, chin, chest, neck, inner thighs and buttocks are other symptoms caused by excess testosterone.

Because of these symptoms, anxiety and depression are common in PCOS patients, with about 40% of women with PCOS experiencing depression.

PCOS doesn’t cause weight gain, but patients often struggle to lose weight, Glueck says. But, people with PCOS are at greater risk for getting type 2 diabetes.

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How is PCOS Treated?

PCOS is not curable, so treating the condition mostly focuses on managing day-to-day symptoms. And, the specific treatments prescribed depend on the severity of symptoms, Givens says.

For women not trying to get pregnant, birth control pills can help regulate periods and may help with acne, she says. The drug metformin can treat insulin resistance, and fertility medications, like clomiphene, can help women who want to get pregnant.

Anti-testosterone medications can help with acne, extra hair growth and alopecia, Glueck says.

“The medicines are very helpful and make PCOS much more manageable,” she says.

Weight loss is another important way of treating PCOS, because it improves symptoms overall, reduces insulin-resistance and prevents the progression of Type 2 diabetes, Glueck says.

For some women, going through menopause can relieve some of the symptoms, Givens says, but, “It's a lifetime condition.”

“So, it's really managing this condition for a lifetime, which is really depressing for patients to hear,” she says.

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