Diagnosis Misunderstood

When it comes to endometriosis and diagnosis, on paper, it can seem fairly straightforward. But to a thirteen year old girl, it can feel like anything but. I vividly remember long nights when I couldn’t sleep because the pain was so bad. The nausea caused by the incessant cramping and pain felt incomprehensible to me. Crawling into my parent’s bedroom in the middle of the night because it was too painful to walk with tears of frustration, pain, and exhaustion streaming down my face. The nights were long and I had no idea that my experience wasn’t the norm for everyone.

Alone in my experience

I looked around at all the other girls my age, they seemed to be dealing with this new idea of “periods” much better than me. They didn’t have circles under their eyes from lack of sleep. They didn’t constantly squirm in their seats in class, trying to find the least painful position on the hard chairs to survive the duration of class. I missed valuable information because I was too busy praying that class would end soon so I could bolt to the bathroom to make sure there were no stains on my uniform.

"I am weak"

I thought there was something wrong with me. Not something medical, rather something wrong in my personality, like I was just not a strong enough person to manage what it seemed all the other girls my age appeared to manage with ease. I certainly had no idea that what I was experiencing wasn’t “normal”. If I did manage to get the courage to talk to anyone about my experiences, most just readily agreed that, "Yeah, this whole period thing sucks".

"I am faking"

I suppose it's the classic, “hindsight is 20/20” scenario. But knowing what I know now, did no good to help the insecure 13 year old girl I was. So I continued to live that way, through high school and into the start of college, when I had my first “grown-up” doctor appointment. After speaking with the gynecologist about my symptoms, she didn’t diagnosis me at the time, but she did prescribe birth control in an attempt to control some of my symptoms.

"I am unable to cope"

However, if you go back to over 20 years ago, add in a conservative Catholic family, you might get a pretty clear picture about how prescribing birth control to an 18 year old girl went. "Suck it up." "Tough it out." And my personal favorite, "Just take some Tylenol"- All of which seemed to be the only remedies actually available to me at the time. I had to plan my entire life around my periods as best as I could.

I went to work, even in high school, on my feet all day, with my abdomen wrapped in duct tape in an attempt to avoid having to call in “sick.” I missed out on parties with friends and time with my family. All because I never really understood that there was an actual diagnosis for what I was experiencing. I had no idea that there was something “wrong” with me or that my experience wasn’t “normal” for everyone. I simply assumed I was weak. I assumed that I had some sort of personal defect because living with this, month to month, was so hard for me, and so easy for everyone else.

Diagnosis misunderstood

A clear diagnosis, a simple explanation, a 5 minute conversation would have made all the difference in the world to me. But that conversation never happened for that scared teenager until many years later. It was only beyond those tumultuous teenage years, by a kind and compassionate doctor, that I finally had that conversation. It was only then that it became clear to me.

I wasn’t weak.
I wasn’t faking.
I wasn’t unable to cope.

My diagnosis was misunderstood.