For a long time I’ve wanted to write about my road to a diagnosis, and reading this great post inspired me to go ahead and do so. I think that stories of diagnosis are not only helpful to people looking for answers, but also cathartic and comforting to people who remember that moment when your world began to turn upside down.
I’ve talked a little about my experience pre-diagnosis and you can read more in-depth stories at that link there, but for now I’ll do a quick sum up.
- When I was 15, I got dizzy and almost fainted from extreme abdominal pain once in band. My (male) director declared it to be dehydration and “coming of age.” I was a late bloomer and hadn’t had my period yet so I was pretty clueless and believed this to be true.
- A year later, a similar thing happened at a football game – I spent the entire first half curled up in the bathroom. I learned how to swallow a pill with food to take some Tylenol.
- My senior year I fainted for real during practice, and this was the first time I saw a doctor about this pain. I had stupid ideas about what was causing it and so did they – I was wondering if one could get pregnant from kissing (oh admit it, everyone wonders that at some point!) and my doctor was wondering if my organs had swollen up and started rubbing together. A sonogram proved us both wrong, and I was left undiagnosed until after graduation.
I never connected these extremely isolated incidents until long after diagnosis. I just brushed it off with the vague notion that every girl had such extremely painful cramps, and since I was extremely active with colorguard it was probably normal for muscles to hurt really bad sometimes.
I got a big wakeup call during my second year of college.
I woke up one morning at about 6:00 AM in the most intense pain I have ever experienced in my life. I did what anyone does when they’re sick – I dragged myself to the bathroom. I tried to throw up. I realized this pain and nausea felt a lot like needing to pee x 10000000000000, so I tried – nothing. I should mention that absolutely any movement, any change in position, every step I took multiplied my level of pain. Panicked, I stripped down and got in the shower. I turned on HOT water hoping it would sooth and ease the pain. I curled up in the tiniest ball.
At this point, I had fallen the entire length of Maslow’s triangle.
And if that is new and strange to you, let me provide some helpful pictures:
I was in a state of wild animal panic. Never before had I been in any kind of pain that could not at least be soothed by changing positions or applying warmth. This pain was ravaging, it seemed that the only way to keep it from getting worse would be to not move at all. But I was in too much pain to not move at all.
There was only one thought in my mind – EMERGENCY ROOM.
I was living at home, and my mom worked for an elementary school, so I knew she was up and getting ready for the day.
Naked and crazy, I climbed out of the tub and laid there crying loudly, hoping that someone, anyone, would wake up and come find me. No such luck. I pulled on my pjs, and ring-crawled to my parents room.
Wet, frightened, and only holding on to a fine string of sanity, I went into my mom’s bathroom and told her, as calmly and slowly as I could, that I was sick. Understandably confused, she suggested I take a motrin. I did. And really, about this point my memory gets very fuzzy, which is a sign of how crazed I was. Anyway, things happened, and eventually I demanded to go to the emergency room.
I was crying and screaming and going absolutely nuts. As we were going out the door, Mom asked if I had shoes on. Because I didn’t. To which I replied “DO I NEED SHOES?!?!?!” My mom loves that part of the story. I’m sure standing there on the stairs, wild eyed and tear-stricken (and barefoot) I looked the picture of pathetic hilarity.
We walked outside and I totally threw up in the street, more out of panic than anything else. Then we got in the car and I resumed screaming and crying. I was mad as a march hare.
Mom got my OBGYN on the phone, thinking I had a bladder infection. He asked to talk to me and I scream cried at him over the phone. Pretty sure he couldn’t understand anything except that I was in hysterics.
He told my mom not to take me to the ER, as I would just be waiting for a long time anyway, and sent over some medicine for the “infection” along with some vicodin. I was pretty hell bent on getting to the hospital and having them pump me full of whatever magic drugs they had, but I had never had vicodin before and I was at a point of doing ANYTHING.
Since it was so early my pharmacy wasn’t open yet, we had it sent to a 24 hour pharmacy, but it would still be another hour before it got to me. So I laid on the couch crying and disturbing my father and sisters as they got ready for work and school.
The first vicodin worked slowly over the next four hours, taking me from screaming, to quietly sobbing, to laying quite still, to feeling close to normal. I was instructed to stay on vicodin all day. The next dose got me feeling giggly, and by the end of the day I was a very cheery girl.
Some time passed, and my doctor wanted me to come in and test for the bladder infection. I don’t think it was the same day, but it wasn’t long enough for it to have gone away just yet. So I went in and turned in a sample. A little while later I got a call saying it wasn’t a bladder infection at all and I needed to come in again.
I went in and my doctor poked my tummy a little and asked if it hurt. It did. Apparently that was all he needed to know to decide that it was probably endometriosis. Endo can only be truly diagnosed by surgery. I would need to have surgery. I didn’t know what to say. He told me everything would be fine, and that he’d done this procedure many times before. I still didn’t know what to say.
My then fiancé and I left, and walked around the bottom floor of the hospital. We sat by the fountain and called my mom to tell her I’d need to have surgery. She was surprised.
My fiancé told me it was all okay, and he wasn’t going anywhere. I told him it was incurable, my new medicine was expensive, I didn’t know what would happen to me, and I wouldn’t blame him for leaving. He assured me that, in sickness and in health, he’d never leave me.
There’s a play area at the hospital that has a whale coming up out of the carpet.
We went over there to take our minds off the news that I was sick and would be sick forever. It may look unimposing, but if you want to get on top of that thing, you have to take a pretty good running start. We ran at it over and over and over until we were both perched triumphantly atop his big whale nose. My now husband had me take a picture of us with his phone ~
And it’s like, one of my favorite pictures of us ever. On our wedding day about a year later, we played a video that showed our “love story,” the story of how we grew up, met, and fell in love. The video closed with this photo, and the words:
Happily Ever After
Once Upon a Time…
And that’s the story of my diagnosis.