My PCOS Journey

Happy PCOS Awareness Month!

My PCOS journey will never be over. There is no way to cure PCOS. You live with it forever. But, you can learn to manage your symptoms. Being diagnosed with PCOS felt like a relief and a hopelessness at the same time. On the one hand, it had taken me 2 years, 3 doctors and endless testing for someone to finally diagnose me. But, the diagnosis only meant I now knew for sure I was in for a battle if I wanted to feel good again.

Going to the doctor is a different experience when you are fat, or considered “obese.” In my experience, any issues I brought up were blamed on my weight or the assumed eating habits that lead me to that weight. And, these weren’t just any doctors. I was seeing specialists, endocrinologists, who work with people every day who are overweight due to different hormonal imbalances, diabetes, thyroid issues, etc. And, I was still written off as being a fat girl looking for a miracle pill to lose weight.

One doctor actually did give me a medication that is used to lose weight quickly. I took it for about three weeks and was having horrible side effects, like literally feeling drunk and dizzy all the time. I finally stopped taking it because it wasn’t helping and the side effects were awful. I later found out, from another doctor, I wasn’t even supposed to be taking it with my birth control and I was never warned.

My next doctor just tested me and tested me and tested me and tested me. They all came back the same. The best part was they all came back with signs of PCOS. But, she insisted nothing was wrong I just needed to eat better and exercise and then would recommend I do more tests.

Finally, I took all of those test results and found another doctor. This time I was extremely picky with who I chose as a doctor. I didn’t just pick an endocrinologist, I picked one of the top endocrinologists in the city for specifically PCOS.

At this point, I had taken so many tests I had started to do my own research on the results and realized I probably had it, so I decided to choose a doctor who would definitely know. And, she did. She was shocked I had been forced to take so many of the same tests over and over when they all came back the same and they all showed significant signs of PCOS symptoms.

Not only were my test levels signs of PCOS, but I had cystic acne all over my chin, my hair was thinning, my period was sporadic, and it wasn’t just that I had weight gain, but that my body was carrying the weight in weird places (for me) like my back and the lower portion of my stomach. I had gained the weight very quickly and couldn’t lose it. I had tried to explain that these were issues I had started to notice within the past couple years, it wasn’t normal for my body, but it wasn’t until the 3rd doctor that anyone believe me.

PCOS affects as many as 5 million women in the US. And, half of women with PCOS will go undiagnosed or misdiagnosed. You can learn more about the PCOS and the symptoms here, here, and here.

I’m not a health professional. Everything in this post is based on my experience with PCOS, doctors, tests, etc. But, I feel like it is helpful to share experiences and spread awareness in the chance it helps just one person who is feeling as lost as I was at the beginning of my journey.

I decided to write this post simply because I think that there needs to be more awareness for PCOS and more awareness that weight gain and being fat is not always caused by someone’s diet or being lazy. And, the choice whether to lose weight and how to lose weight is personal.

One thing I wish I had known, but recently learned from social media, if you ask your doctor for a treatment or a test and they refuse, ask them to write it down in your chart: what you asked for and why they refused. If you feel like something isn’t right (you know your body better than anyone) and you feel your doctor is discriminating against you for any reason (weight, race, gender, sexual orientation, etc.) be your own advocate, do your own research, and find a doctor who will actually listen.

My PCOS journey is forever, but I am learning to manage my symptoms through my medications, diet, exercise, and reaching out to the amazing PCOS community that you can find online for support.

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