What I Did With My PCOS Diagnosis

PCOS BlogSo, after 10+ years of being symptomatic, I was finally diagnosed with PCOS in 2005. Before that, I’d never even heard of the syndrome. At first I was pretty scared; I had no idea what PCOS was all about. All I knew was that the name “Polycystic Ovarian Syndrome” really confused me.

After an ultrasound, I found out that I didn’t have cysts on my ovaries, and that the name “PCOS” is just a general term. Girls with PCOS can have many different symptoms, and they can vary. So while some girls do have cysts, others don’t. Pretty confusing, huh?

Well I was confused, and I didn’t get much information from my doctor other than a diagnosis and a prescription for Metformin. Needless to say, I wasn’t satisfied. I really wanted to understand what was going on with my body, and what PCOS was all about. Naturally, the first thing I did was type PCOS into Google to see what came up. I learned a lot about the syndrome through websites including ours, the American Association of Clinical Endocrinologists, and womenshealth.gov. I found a great support network through projectpcos.org, and even went on to become a forum moderator on the site.

As time went on, I found out that PCOS is actually a pretty common condition – almost 1 in every 10 women has it. I really couldn’t believe that I’d never heard of it before! The more women I talked to, whether online or in person, the more I realized how important awareness is. I decided that as a young woman who had PCOS for over 10 years without knowing it, it was my job to do my best to educate others about the condition so if they had symptoms (or knew someone who did) they could get information and help themselves.

PCOS Awareness Campaign - Amanda KohnDuring my senior year of college, I created a PCOS awareness campaign that included a website, a workbook, postcards, and posters all about PCOS. Although the website is now defunct, the postcard campaign went on to reach hundreds of people around the world. Even if you don’t want to create a full on campaign, it’s great to spread a little awareness here or there. Helping others help themselves to information and resources really enabled me to become comfortable with my diagnosis. After getting positive feedback from other young women who realized that they too had PCOS symptoms but hadn’t yet been diagnosed, I wasn’t scared anymore. In fact, it felt great to have been able to make a difference, and I felt empowered. PCOS is a manageable syndrome, and with the right tools, you can take care of yourself and live a happy, healthy, PCOS-friendly life.

To read more about PCOS, click here.