What you don’t know could hurt you. Reliable knowledge about polycystic ovary syndrome (PCOS) can be hard to find, leading to delayed diagnoses and common misconceptions about the condition’s causes and symptoms.

Members of myPCOSteam often share what they wish they’d known about their condition. “I wish I'd known that the heavy, painful periods I’ve experienced since my 13th birthday were symptoms of PCOS,” wrote one member.

“I didn’t know there were different types of PCOS until I joined this site,” said another.

Read on to learn some important facts about hormone levels and living with PCOS.

1. PCOS Is Not a Rare Condition

PCOS isn’t rare. According to the Centers for Disease Control and Prevention (CDC), PCOS affects between 6 percent and 12 percent of women of reproductive age in the United States. That’s about 5 million American women. It’s also one of the most common causes of female infertility.

Here are some celebrities who live with PCOS.

2. Your Behavior Did Not Cause Your PCOS

Since PCOS tends to run in families, researchers believe genetics play a role in who develops the condition. Some studies suggest genetic or environmental changes that happen in the womb may contribute to later developing PCOS. Since genetic factors and the environment before you were born are both beyond your control, it’s not true that your behavior caused you to develop PCOS.

Read more about causes and risk factors for PCOS.

3. PCOS Affects People of All Body Sizes

PCOS can affect anyone with ovaries, no matter what size body they have. Research has shown some relation between PCOS and higher body weight, but scientists are still studying that relationship. Studies have reported that between 38 percent and 88 percent of women with PCOS fall into the “overweight” or “obese” categories on the body mass index (BMI) scale — although a person’s BMI score is not always a reliable indicator of their health. However, that means that between 12 percent and 62 percent of people with PCOS have other body types.

Read more about different types of PCOS.

4. PCOS Can Impact Your Health Beyond Fertility

PCOS is a common cause of infertility. However, it can have a serious impact on your health, even if your future plans don’t include children. People with PCOS have a higher risk for developing conditions including:

• Type 2 diabetes
• High blood pressure
• Heart disease
• Stroke
• High cholesterol
• Sleep apnea
• Stress
• Anxiety
• Depression

When you have PCOS, it is important to regularly monitor your health for these risks. Be sure to attend all follow-up appointments with your doctor. If you’re experiencing mental health stress, your doctor can refer you to a counselor or therapist.

Knowledge Is Power

It’s vital to keep learning about PCOS in general and about how it affects your body in particular. The more you know, the better you can advocate for the health care you need. Don’t be afraid to ask your doctor questions and communicate your concerns and goals. And remember, you’re not alone.

“I realize now that it was the PCOS destroying my body and not something I was doing,” shared one member of myPCOSteam. “I’m glad to have found this site! I wish I’d known back then and had a group of gals who understood what it's like to live daily with this beast on my back.”

Talk With Others Who Understand

On myPCOSteam — the social network for people with polycystic ovary syndrome and their loved ones — more than 70,000 members come together to ask questions, give advice, and share their experiences with others who understand life with PCOS.

What myths were you told about PCOS? What facts about PCOS do you wish you’d known earlier? Share your experience in the comments below or join the conversation on myPCOSteam.