Megan Stewart is the founder of the PCOS Awareness Association, a nonprofit that advocates for people with polycystic ovarian syndrome (PCOS). For the past 9 years, this organization has helped millions of people with PCOS find the resources they need to understand and manage their diagnosis.
Megan didn’t initially set out to create the nonprofit, but after struggling to find a strong support system years into her own PCOS diagnosis, she knew something needed to change.
“About age 23, I had this horrible pelvic pain that was so unbearable, I couldn’t handle it,” Megan recalls. “I was actually admitted to the ER.”
The attending doctor told Megan that it was just “a cyst rupturing on your ovary” and since she had PCOS there wasn’t anything they could do.
“As I was leaving the hospital, my mom looked at me, and said, ‘oh no, what are you about to do?’ I was livid,” Megan says. “I just could not understand how that was all that was told to me.”
Looking for Answers
Megan first started experiencing PCOS symptoms when she was 9 years old, but it wasn’t until she was 16 that she was diagnosed. “My mom was my biggest advocate,” Megan says. “She was literally taking me from specialist to specialist.”
When Megan was initially diagnosed, the doctor told her PCOS would mainly affect fertility. But after the ER experience in her early twenties, Megan knew there was more to the story. And she also knew she couldn’t be the only one looking for answers.
“I actually found a group called PCOS Soul Sisters. It was a message board specifically for women with PCOS,” Megan says.
She enjoyed connecting with others on the message board, but she really wanted to find more resources. Ultimately, she realized she would have to build what she was looking for, herself.
Around this time, Megan started making teal PCOS bracelets and sharing them with friends and family. She hoped that when someone asked about the bracelets, they would be able to share insight about PCOS.
Megan’s cousin posted an Instagram picture with the bracelets that quickly went viral.
“I was getting messages left and right,” Megan says. ‘People were asking me how to get a bracelet because they had never seen anything like this for PCOS before.” That’s when it all clicked.
Building a Global Support System
The initial success of the bracelets gave Megan the idea and resources to launch her nonprofit.
She filed a 501(c)(3) for PCOS Awareness Association and, after a long 16 months, her nonprofit was approved.
“Today we are the world’s largest nonprofit organization dedicated to polycystic ovarian syndrome,” Megan says.
The organization offers a variety of services to people across the globe, from a 24/7 crisis text line to a PCOS-focused social network to evidence-based resources that people with PCOS can bring to their healthcare providers to discuss.
“We reach millions of women every year,” Megan says. “And that is empowering.”
Her Advice? Believe in Yourself
Megan wants young leaders to know that, while the work isn’t easy, it is rewarding.
“If you believe in something strongly, go for it,” she says. But she emphasizes that you have to be the one to believe in yourself, too.
She added that it’s important to do your research, get a mentor and surround yourself with a strong team.
“My motivation comes from knowing that people are being helped,” Megan says. “And my team motivates me as well. If it wasn’t for them I don’t know if I would have made it through this year.”