MY BATTLE WITH PCOS

My hormone journey started when I was 13 years old. I started my period and soon learned that my cramps and PMS were so severe I could barely survive a day in school. I missed at least one day per month my first two years of high school. The pain was so severe I couldn’t take it. I’d load up on anti-inflammatories and lay in bed with my heating pad all day. I know many of you feel my pain.

Sophomore year of high school, it was the day of the father daughter dance. My dad and I had so much fun at the first one, we were super pumped to go again. I woke up with a weird, dull pain in my abdomen. I couldn’t really describe it at first. It was more of a vague ache. I knew I could push through and make it to the dance that night so I didn’t say anything to anyone. That night at dinner I couldn’t eat the pain was so bad. Everyone kept commenting on how pale I looked. I said I was fine, just not hungry. I didn’t want to have to end the night early. We got to the dance and stood in line for pictures. All of a sudden I noticed my hearing and vision were going and I knew I was going to pass out. I made my way to a chair and put my head between my legs before that happened. I sat for a while and felt better so I went and got back in line. The next thing I knew I collapsed. 

I couldn’t breathe the pain in my abdomen was so bad and was radiating to my chest. My dad took me to the local children’s hospital emergency room. They told me I was having a panic attack. The triage nurse took me through breathing exercises condescendingly as she took my vitals and told me to calm down. Then started the work up. Everything came back negative in the ER so I was admitted. No pain medication was touching the pain. Finally the next day they decided since they couldn’t find anything wrong except a minor abnormality in my appendix on imaging they were going to do laparoscopic surgery to try and figure out what was going on. They had the intention of possibly removing my appendix, but my dad was not convinced. He asked if it could be a hemorrhagic ovarian cyst and was immediately shut down. After putting me under, they cut into me, and blood started pouring out of my abdomen. I had an abdomen full of blood from a ruptured, hemorrhagic ovarian cyst. They evacuated the blood and closed me up. I took weeks to recover from all the irritation and was put on birth control. No one told me I had polycystic ovarian syndrome (PCOS). No one told me why I was being put on birth control. I didn’t think to ask. I was 15 years old. No discussion was had. It just was what it was.

Several years later my sisters started having symptoms of hormone issues. Severe acne, irregular periods, mood swings ruled their lives. My dad started desperately seeking a way to get them help. He finally came across Neal Rouzier, MD who had developed a training program for bioidentical hormone replacement therapy. He teaches an alternative approach to optimize hormones that has changed my sisters, and so many of our patients lives for the better. When the girls were diagnosed with PCOS, my dad told me I had it. “No I don’t” was my response. If you know me now, and especially if you knew me back then, to say I’m stubborn is an understatement. I had none of the classic symptoms aside from the ruptured cyst and I wasn’t willing to accept the diagnosis. Looking back now, I absolutely had PCOS, but my birth control was masking my symptoms by suppressing my hormone levels. 

So, the years went by and I continued to feel fine on the birth control. However, when I started physician assistant school the stress on my brain, on my body, on my well being was overwhelming to say the least. Two years of staying up late, studying, jam packing my brain with as much information as possible, performing, doing rotations, eating like crap, skipping meals, stuffing my face when I had time, so much fast food, drinking and partying to blow off steam, over exercising to make up for eating like crap, drinking too much, and to manage stress my body was done. She was so over it. Needless to say we hit a wall. I moved home to join my dad’s practice and my body was exhausted. I could barely get out of bed in the morning for my hour long commute. I would almost fall asleep at the wheel on my way to and from work. The brain fog I experienced was so severe I’m not sure how I got through my days. My mood swings were all over the place. I gained 20 pounds almost overnight. And the next thing I knew I looked in the mirror and didn’t recognize the reflection of the person in it. 

We checked labs and I finally had to accept the diagnosis of PCOS. I was still on birth control, but it wasn’t helping like it had been for almost 10 years. I needed more help. And I was ready to accept it. I started our full hormone program – thyroid, progesterone, metformin, and testosterone. My brain fog improved, my energy and mood was better, I lost a few pounds and my weight became more stable. But, my world wasn’t changed by the hormones. I didn’t notice a night and day difference like so many of our patients have, like my sisters did. So, I did what any person with a chronic illness and no known cures does - I continued looking for answers. I’ll share some of them with you, next.