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.

maslow triangle theory hierarchy
From top to bottom in about 5 minutes.

And if that is new and strange to you, let me provide some helpful pictures:

maslow hierarchy of needs self actualization pysiological good kind important

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.

the ring girl crawl creepy drag myself
I’m sure I looked like just the sort of person you’d want to help and not run away from.

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.

call doctor emergency phone
I think he got the gist of how I felt.

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.

freaking out my family

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.

whale paly area medical city dallas
A more recent picture of me with the Whale

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 ~

whale medical city dallas once upon a time new beginning

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.

25 thoughts on “Diagnosis

  1. I was diagnosed with endo in my early 20’s, a year after our daughter was born. It is amazing to hear how much difficulty some doctors have in diagnosing it. I went through all kinds of treatment, meds. A doctor finally got it right, and my surgery helped for a few years. It came back almost as badly the next time, but more surgery & meds have kept me symptom-free. When you first described the pain, I thought it sounded like either endo or a kidney stone. I encourage you to keep studying information about it and look for any treatment options. I hope the medicine continues to control the pain.

    1. Medicine did a great job for a long time, but it’s starting to look like it’s time for a change. I’ll definitely keep researching and fighting! And I’ll keep you all posted on where my road takes me. 🙂 Glad to hear you are currently symptom-free! I hope you stay feeling good.

  2. wow. that sounds absolutely horrible. i can’t imagine being in that much pain for that much time. i love reading diagnosis stories – it’s insightful to hear about the battles others have faced and about how life changed in a moment. thanks for sharing yours 🙂

    1. And thanks again for sharing yours! Diagnosis stories always make me feel so close with the blogger, like we’re good friends. I love the way you phrased that – “how life changed in a moment.” That sums it up perfectly.

  3. Interesting, and funny writing about such a serious subject. I can only imagine that type of pain, and you know, I had no idea exactly what endo was until I read your blog. Had heard of it, but now I can completely empathise with anyone who has had to live with this because I have this ginormous understanding of it that you have given me, thank you.

    1. There are so many conditions that I’ve learned so much about from reading people’s blogs, and I’m always grateful to find out about more. Your blog, in fact, was one that totally educated me on a subject I knew nothing about – I’m much more careful about wearing spray perfume now, especially if I’m going somewhere where I’ll be in contact with a lot of people. It’s great knowing there’s something I can do to help. But more than that, empathy is the most important thing. Before I got sick, I was not a very good empathizer, and now I feel so much more loving towards people, especially strangers, knowing that I can’t tell by looking at the outside what they might be going through.

      It’s so encouraging to hear that my blog is helping educate people too. Education/awareness is the most important thing to me, and I’m so glad it’s helpful. 🙂

  4. What a wonderful post that brought humor even when addressing such a serious medical situation. I have had to contend with lots of pain too and when it is at its worst it is beyond words. Thanks for sharing yours story.

    1. Thank you so much. I’m glad I could make it humorous, I tried really hard to, haha. Another blogger recently told me that after the pain is gone, it’s hard to remember what it felt like. I remember hurting, but when I try to remember really how it felt to be in that much pain, it’s very difficult. That’s what makes day to day pain analysis so hard! Beyond words for sure. Thanks for commenting!

  5. Oh my goodness, I *literally* just finished writing a much more jumbled post about my own road to diagnosis, though I didn’t set out to do so at the time. Thanks so much for following me, it seems that great #spoonies must think alike! 🙂 I’m really enjoying reading your writing.

    1. Great spoonies do think alike! 😀 I read your post and commented, I want to apologize because my comment probably sounds really short and mean, but I was just so moved by your post and so angry on your behalf! GAH! Doctors! But clearly you’re a very good writer. 😉

      1. Oh no, not mean at all!! I was flooded with glee, actually, because of your unabashed understanding and push in the right direction. I needed it. 🙂

      2. Phew! That’s good. After I wrote it I had to leave the computer, and I spent the whole bus ride feeling like I just worded the whole thing terribly…anyway, it is true, you need a doc who will take care of you! I can’t stand to see a fellow Rachel be treated so poorly.

  6. Rachel, Loved this post and I think someday I will write a similiar one talking about my surgeries, great idea. Your sense of humor is great, and heck you need a sense of humor to deal with all of this shit don’t you? After my last surgery I woke up in recovery and saw Dr. House leaning against the wall smiling at me. YES, Dr. house. Drugs are good sometimes!

    1. Haha that sounds like good meds! Yes indeed, I don’t know what I’d do without a sense of humor. No matter how miserable I am, I am always aware that it’s probably funny to a third party point of view. I try and laugh along with my (at the time) invisible audience.

  7. I can see why your fiancée quickly waved away your suggestion that he leave you. He would have been crazy to abandon such a beautiful, funny, strong woman as you.

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