My Diagnosis

My diagnosis story begins on the bathroom floor of my childhood home.

I was fourteen and had been dealing with my period for over a year. The pain was only getting worse each cycle. My parents and I had been talking about seeing a doctor about the pain soon, but this day was the final straw and what started it all for me.

At the point I had spent a few nights and early mornings on the bathroom floor due to my pain. The tile was cold and comforting against my writhing pain and burning skin. This particular morning I could not get off the floor and stand up to get ready for school, no matter how much I tried. My dad spoke to me through the bathroom door, asking what he could do to help. My mom offered painkillers and comfort, but nothing was working.

Pt 1: Family Doctor + Tests

I don’t remember a whole lot of that morning, but I do remember staying home from school and my dad rearranging all of his meetings at work that day so he could take me to my family doctor. My family doctor tried to tell us that I “just had bad periods” and that I should take Advil. My dad fought back, stating that my mom had endometriosis, that it was often hereditary, and that we needed to book an ultrasound before we left the office.

And so began the beginning of a journey that changed my life.

I was fourteen when I had my first pelvic ultrasound after a bunch of follow ups and delays. I had to drink the required amount of water during gym class (super fun, as you can imagine). I left class to get into my mom’s car and go to the ultrasound, where I learned that ultrasound techs can’t tell you the results, but it didn’t stop me from trying to read their body language and grasp for the explanation I wanted so badly.

In this picture I was 16 and visiting DisneyWorld! But my period did not care and I was in so much pain.

Two weeks later I got a call from my family doctor, asking me to come down to the office, where they diagnosed me with Polycystic Ovarian Syndrome (PCOS). I had cysts on my left ovary and from what I remember, a smaller one on my right. I met most of the other requirements so they narrowed down the diagnosis. I was to start birth control to manage the pain and cysts.

That night I went home and cried. My younger brother was with some friends, so my parents brought home ice cream and we watched Breakfast at Tiffany’s (my favourite movie) until I fell asleep between them on the couch. I didn’t want to tell anyone. I wanted to pretend nothing was different about me. I think I texted a few close friends and then never talked about it again.

The next couple steps are a bit blurry because it happened quickly. I tried 3-4 birth controls in a 12 month period and none of them helped me in the ways that we needed them to. My ultrasounds were coming back clear without cysts, but my periods were still horrific. It was clear the issue wasn’t PCOS, or at least not the only issue.

Pt. 2: Specialists

When I was fifteen I was referred to a specialist across town who I saw a few times and prescribed me different birth controls, but when we said that treatment wasn’t working, she told my mom in front of me-- “the reason she feels this way is because she eats McDonalds. No more of that.” My mom looked like someone had slapped her across the face. “She is a teenager and deserves to live a life as normal as possible. She’s going to go out with her friends and eat fast food every once in a while, and I’m not going to tell her she can’t do that.” We quickly left and I silently cried as we walked to the car, feeling as if my pain was somehow my fault. “We’re never coming back here. We’ll find someone else, I promise,” she said.

Back at square one, we managed to get a referral through my family doctor to a specialist at Children’s Hospital but she couldn’t see me until I turned sixteen. So for a few months we tried other medications and pain management strategies.

Eventually, shortly after my 16th birthday, I met my pediatric gynecological specialist. Through her I was referred to a pelvic pain program at Women’s Hospital and I was given a new medication to try.

Pt 3: Surgery

After failing medications at different doses with different hormones, attending a pain clinic, seeing a physical therapist, trying different types of pain management and keeping a detailed record of my pain and symptoms of upwards of 8 months, I pleaded with my specialist. “I don’t know what else to do. I am struggling and I am tired. I will try whatever you want me to, but I’m having a really hard time. I am surviving, but I’m not living.” After a long discussion and the previously mentioned hard work, she offered to perform surgery on me. An exploratory, diagnostic laparoscopy with removal of whatever she found, if anything. Surgery is currently the only way to confirm a diagnosis of endometriosis.

2 months after my 17th birthday, I was diagnosed with endometriosis during surgery. It was found in a few places, including my left ovary. That surgery is another story for another day, but it was a moment in my life I will never forget. I felt so at peace. In pain, but at peace. I wasn’t “crazy” and it wasn’t in my head.

Me at 17! Just a little baby!

My diagnosis changed my life. It changed how I saw the world and how I spoke about myself. No longer was I weak, or with low pain tolerance, or to blame. My pain was validated in all the ways I so desperately searched for.

I didn’t realize it at the time, but it instilled a newfound passion inside of me that I will forever hold close to my heart. I will be an advocate for as long as I’m living, that I can promise you. I won’t be quiet anymore. This pain is real, all-consuming, and terrifying. We’re going to change how we talk about it. And I hope you’ll be here for it.