I am one of the lucky (see: sarcasm) women who suffer from polycystic ovarian syndrome, or PCOS. I recently posted a tweet discussing my never-ending berating of myself for my weight and excess facial hair and acne. These are all symptoms of PCOS, and I was surprised to see so many other women replying they too felt my pain as fellow “cysters”. It is very much a silent metabolic disorder with very few obvious symptoms. But they can be a constant nuisance or even painful and agonizing on a daily basis.

In 2003 I was a freshman in college and I thought I was suddenly experiencing appendicitis. I had a very sharp pain in my right abdomen so much so that it took my breath away. My parents came to my dorm and took me to the ER. After testing they ruled out appendicitis and said there was some fluid in my ovaries, and the diagnosis was a burst cyst. They referred me to gynecology. The Dr. there reported to me was that I needed to be on the birth control pill because I would be prone to more cysts. She also mentioned they would regular my periods, and since the age of 12 having one period every 3-4 months, a predictable one was welcomed news. That’s all she ever said, and I complied.

Fast forward to 2011. My husband and I were newly married and eager to start our family. We began to try in July, and by November I was becoming discouraged. I had dreams of announcing my pregnancy over the holidays, however every pregnancy test was turning up negative. I mentioned this to my new OBGYN, to which she stated “well, it’s going to take a lot longer than most due to your PCOS”. I nodded in confusion, as I had never heard that acronym before. I went to my car and googled it and I felt a wave of both relief and dread wash over me.

Excess body hair. Acne. Difficulty losing weight due to higher insulin resistance. Irregular and often times absent menstrual cycles. Darkened areas of the skin such as under arms and groin. I HAD IT ALL. Everything I hated about my body was listed under one simple diagnosis. And suddenly everything made sense. How odd, after living with these symptoms since puberty, to have a single name to label it with.

So no, no one actually sat me down and explained to me my diagnosis. It was just there in a file somewhere. My primary physician asked me if I had ever been put on metformin for it, and I told her no, but I really didn’t have any desire to be as it has several side effects and I wasn’t a diabetic. That was the only mention of any medicine anyone ever offered.

The cause of it is unknown. But it can affect several of the body’s systems that can lead to so many health problems including diabetes, obesity, fatty liver, and infertility. I developed gestational diabetes with my second pregnancy and combined with the fact that my mother has type II diabetes my doctor said it was inevitable that I will also develop it.

After doing several searches on my own I found different websites and blogs pertaining to my condition and did a lot of reading on my own. I have experimented with some supplements and a lot with dietary changes and have found some changes that make this condition manageable.

It’s an invisible metabolic disorder which can make it exhausting when people try to offer advice for losing weight that should in theory work but does not with my imbalanced hormones. It is often times frustrating when I eat well and exercise and see a negligible loss on the scale or even a gain after weeks of commitment. I have to remind myself my body does not respond the same way as someone without PCOS to diet and exercise but I eventually become anxious and depressed about my weight and binge eat. Then the vicious cycle repeats itself again and again.

Always trying to diet or exercise…in between stress eating binges!

I admit I have not made a great effort in connecting with other “cysters”. I think part of it is my anxiety, just putting myself out there and being vulnerable. I become very intimidated when meeting new people and trying new things. So this is my start. I will continue to fight to be the healthiest version of me that I can and understand my body as it continues to change with time.