Polycystic ovarian syndrome, or PCOS, is the most common hormonal disorder among women of childbearing age, affecting about 1 in 10 women between the ages of 15 and 49. Yet, PCOS is still widely misunderstood and frequently undiagnosed.

“PCOS is not a simple, clear-cut diagnosis,” said Reproductive Endocrinology and Infertility Clinic Director Erica Wang, MD, at Cedars-Sinai. “It’s a constellation of symptoms including weight gain, unwanted hair growth, irregular menstrual cycles and fertility challenges.”

We asked Cedars-Sinai’s reproductive experts—Wang and Jessica Chan, MD, a reproductive endocrinologist—to debunk common misconceptions about this confounding syndrome.

With a name like polycystic ovarian syndrome, it’s natural to think a PCOS diagnosis means you have cysts on the ovaries. In fact, the “cysts” in PCOS aren’t cysts at all, but fluid-filled sacs (aka, follicles) where immature eggs have been trapped. 

“Plenty of women who have PCOS don’t have ‘polycystic-appearing’ ovaries,” said Wang. “That’s why we use a broader set of criteria for diagnosis.”

To be diagnosed with PCOS, women must meet two of the following three criteria: 

• Higher than normal male reproductive hormone (androgen) levels, which may lead to acne, unwanted hair growth and thinning hair on the scalp
• Irregular periods
• Polycystic-appearing ovaries on ultrasound

Read: Understanding Ovarian Cysts

PCOS can lead to irregular periods, but not everyone with menstrual irregularities has PCOS. Many other conditions also disrupt the menstrual cycle, including stress, low body fat, breastfeeding, pelvic inflammatory disease, uterine fibroids and thyroid disease. “Women of reproductive age need to understand that going months without a period isn’t normal,” said Chan. “If your cycle is less than 22 days or longer than 34 days, see your doctor for an evaluation to identify the underlying cause.”

Carrying extra weight is a common risk factor among women with PCOS, but 20% of women who have PCOS are average weight or even below average. Regardless of weight, women with PCOS often struggle with resistance. “Weight loss among overweight women, even a modest amount, can improve symptoms,” said Chan. “Unfortunately, many women with PCOS have trouble losing weight because of the hormonal impact of the condition.”

PCOS is linked to infertility (it hinders the ovary’s ability to release an egg), but the implications of PCOS extend far beyond baby-making. PCOS is associated with increased risk of developing heart disease, diabetes and endometrial cancer (since buildup of the uterine lining is linked to increased cancer risk). In fact, there has been a push in recent years to rename PCOS “reproductive metabolic syndrome” to reflect the reproductive and metabolic abnormalities of PCOS.

Read: Should I Freeze My Eggs?

Since PCOS is a syndrome, not a disease, there’s no one-size-fits-all treatment that will work for everyone. Instead, doctors tailor treatment to each woman’s unique concerns—whether that means regulating cycles, managing weight or improving mood.

Common treatment options include:

• Oral contraceptives: For women who aren’t trying to conceive, taking birth control pills can help regulate their period, alleviate unwanted hair growth and acne, and protect against endometrial cancer. 
• Drugs that target insulin resistance: Medications such as metformin can help improve insulin resistance, lower blood sugar levels and encourage ovulation. 
• GLP-1 drugs: Weight management can help reduce symptoms of PCOS, especially among women who are insulin resistant. GLP-1 drugs can help patients lose weight.
• Antidepressants: “Women with PCOS have higher rates of depression and anxiety compared to the general population,” Chan said. Antidepressants can help.

PCOS is a syndrome that falls on a spectrum, so not every woman will hit every component of PCOS. Some women with PCOS experience only mild symptoms while others are severely impacted.

Unfortunately, that variability often contributes to diagnostic delays. On average, women see three physicians before they’re diagnosed with PCOS.

“If we ignore symptoms like irregular cycles, it can lead to long-term consequences, including changes to the endometrium that increase the risk of cancer,” says Chan.

Still, not every woman who has PCOS needs treatment. A patient who has excess hair growth, acne or elevated androgens may decide to forgo treatment, and that’s OK—if her cycles are regular.

“While there’s no cure for PCOS, we have a variety of tools to manage it,” said Wang. “With the right support, women with PCOS can regain control of their health.”