My Diagnosis

I’ve already wrote “The Bullshit Diagnostic Process“, so there is a lot of overlap between this blog and that one. But I wrote that one mid-August, while going through some stuff, and pre-second surgery and full diagnosis. Rather than amending that, i’m just adding this blog into the mix. So, here it is:

I was “diagnosed” through a laparoscopic appendectomy in 2016 when I was 21, in my second semester of my first year of university. I say “diagnosed” because technically my official diagnosis came a few months ago, in September 2019. I’m 25 now.

I had my appendectomy after a long and mostly sleepless night, despite all the morphine and gravol (anti-nausea drug if you aren’t Canadian) I was on. I had been admitted to the hospital at 3pm the day before, but I was at the hospital in the ER since 8 or 9am. It was a very long process because, as usual, the doctors had no idea what to do with me.

I spent a whole day at the Royal Ontario Museum, feeling very off and exhausted – nothing new to me. By the time I was on the bus home I was so out of it, and I shouldn’t even have been that tired. I went to bed as soon as I got back to my dorm, at like 6pm, and immediately fell asleep. You would think that as tired as I was, I would have slept through the whole night no problem, but that wasn’t the case. I woke up several times throughout the night with lower abdominal pain, but since this was all too familiar to me I just ignored it and tried to get rid of it with some in-bed Yoga.

By 6 am it was BAD and I couldn’t take it anymore, so I got out of my bed to take something for the pain and just collapsed onto the floor in the most pain id ever felt in my life. I couldn’t stand up straight. After that, I crawled out of my dorm room, to the elevator, to the lobby, and sat there calling a cab. Then I crawled to the cab which took me to the ER.

You would think that bawling your eyes out and not being able to stand up straight would merit a quick assessment, but NOPE. I sat there for an hour crying and feeling like I was going to puke. Was assessed by the triage nurse. Moved to a different area, and waited again for at least two more hours. By the end of the two hours I couldn’t even sit up anymore, I said “fuck this chair” and rolled onto a ball on the floor of an empty hospital waiting room and cried.

A nurse saw me, freaked out, and got a team of people to put me into a room which miraculously was free at that time and the doctor ordered an IV with morphine and gravol. I was assessed, brought in for an ultrasound and kept in that room with a TV showing a marathon of “Say Yes to the Dress” on TLC until 3pm when a surgeon or someone came into the room to ask me a bunch of questions. Then he told me that I had unclear results (what else is new) and that they couldn’t find my appendix in the ultrasound, but there was a massive amount of increased blood flow to that general area. That coupled with the pain I was in warranted a discussion about surgery.

I basically said “doc, cut me open because I’ve been down this road a dozen times and I’m done with this bullshit”.

So, I was admitted to the hospital and told I would be reassessed in the morning and I’d either be released or go in for surgery. At that point I decided that I should probably call my roommate and tell her where I was. I had been MIA all day long, not even answering my texts or anything because where I was in the ER had no cell service. So I used the hospital phone to call her and the don (person in charge) of my dorm floor. Not my parents though.

My roommate and my don brought me some stuff I might need, mainly my headphones, and we laughed at my weirdness thanks to the morphine (and maybe also my personality), and then I was left alone in a ward room of a freakishly cold hospital where I proceeded to rack up my cell phones data bill watching The Vampire Diaries on Netflix and listening to very calming music while silently freaking out about the creepy hospital noises. I may have also projectile vomited onto my bed at wound 2am and profusely apologized to the night nurse who had to deal with that. Apparently pain, morphine, apple juice and an empty stomach don’t mix well.

When the morning rolled around I had gotten maybe 3 hours of sleep, thanks to some very relaxing Native American flute and Tibetan meditation music. They took my blood and the surgeon came into my room to push on my belly and ask me some questions. After that it was determined that my abdomen needed to be explored, so I would go for surgery at around 3pm that day.

At this point, I figured it was a good idea to call my parents and tell them I was in the hospital (and had been for 24 hours now), so I called my mom. While I was on the phone with her telling her how I was getting surgery and I’d been in the hospital all night a nurse came into my room and informed me that there was now space to do my surgery earlier and that I would be going down in 10 min. So I basically had to hang up on my mom (I’m not kidding, the nurse made me hang up on my mother) and I found out later that I had forgotten to tell her which hospital I was in. oops.

She and my dad found it though. With only two hospitals in the area it wasn’t a hard puzzle.

Also, I should explain why I didn’t tell my parents I was in the hospital.

#1 reason: fear.

For YEARS I’d had pain in varying degrees. I’d been to doctors’ offices and hospitals plenty of time with no results or incorrect diagnosis’. I was now labelled a hypochondriac.

I didn’t want to burden my parents with the knowledge that I’d been admitted to the hospital. And I didn’t want to hear them say “oh my god, again? You’re overreacting again”. And, quite honestly, I wanted to see how this played out because at this point in my pain-career I had begun to doubt myself. Maybe it was all in my head?

I didn’t say anything, in part, because I didn’t want to worry my parents and then get sent home with no results, yet again. Obviously that wasn’t the case this time, and I chose to worry them once it had been decided I would go under the knife.

So I got stabbed a bunch of times by some medical instruments while asleep (look up how they do a laparoscopic abdominal surgery on YouTube if you don’t believe me) and woke up feeling like complete trash. On the upside, I had some visitors from my dorm plus my parents, so that was nice.

I spoke to the surgeon and he told me how everything went well and that he removed my appendix, he said everything looked normal. And I’m not even kidding, I was disappointed. Normally an “everything looks normal and you’re healthy” speech from a doctor is fantastic news, but when you’ve gone through chronic pain and uncertainty on multiple levels, you actually WANT them to say something is wrong because at that point you NEED to be validated. Even if it’s for your own sanity.

So, I was a bit crestfallen. I’d been operated on and still had no answers, and once again the doubt crept over me: “is it really all in my head?”

Then the surgeon said “oh and we found some endometriosis in there, growing on and around your appendix so you’re going to want to make an appointment with a gynecologist about that”. Or something along those lines. The main takeaway is that they found endometriosis growing on my appendix and nearby areas of my abdomen, and that he couldn’t remove any of it or do anything about it because he wasn’t a gynecologist.

I asked a couple questions, the first one being “so does that mean I can’t have kids?” because, like so many others in my position, the only thing I’d ever heard endometriosis related to is infertility. He literally couldn’t answer anything because he wasn’t a gynecologist.

Fast tracking through the rest of this story now.

It took me six months to get an appointment with a gynecologist. Another three to actually see her. About 45 minutes to realize my only options were drugs that would severely alter my hormone levels and quality of life, more pain medication (mostly narcotic), getting pregnant ASAP, and additional surgery which included the possibility of a hysterectomy at age 22. Except the surgery wasn’t a REAL option because #1, no way in hell was I getting a hysterectomy, and #2 she straight up said she felt the “regular” surgery wasn’t necessary and that my symptoms were manageable by continuously taking birth control and pain medication. Obviously, the pregnancy option wasn’t a real one either because I wasn’t about to go get myself knocked up for the sake of pain relief. That’s a whole other commitment.

Ya, I never went back to that gynaecologist. I asked for a different referral. Never got one.

I spent the next two years managing my pain the way doctors frequently recommended, and really the only way I could: drugs.

I popped some narcotics at least once a day most days. Usually followed by some type of anti-nausea medication for the “morning sickness” that endometriosis loves to give you. Also, for the upset stomach I would get because narcotics don’t actually agree with me.

Sometimes, when it was really bad and/or I was out of pills I went to the hospital and got an IV with some kind of drug that would take the edge off. Not always narcotic, but I got morphine a few times.

I was also given morphine for a few days straight when I was admitted to the hospital in 2018 for a C. diff infection, not one I recommend risking since it can be life threatening and is NOT a pleasant experience in any way. I won’t get into that whole story right now, but I got the infection because even after I told doctors I had endometriosis I kept getting prescribed antibiotics for UTI’s that I didn’t actually have. Those antibiotics wiped out a lot of the good bacteria which exists in your digestive tract, keeping the bad ones in check, and ended up with C. diff – a bad bacteria – in large quantities. It then decided to take over my body when my immunity was down and voila, about a month (total) spent in the hospital very close to exam season.

The point of that mini-story is that I’ve been on a lot of morphine. It also adds to the point that just because a doctor has told you to take something, doesn’t mean you should just take it blindly. Narcotics aren’t good for you. Too many antibiotics aren’t good for you. You have the right to ask questions about what it is you’re putting into your body, and you definitely have the right to do research on whatever it is before you take it.

After my hospitalization I kicked ass. Got a lot of assignments done and wrote my exams within an impressive amount of time, and I did pretty well. So patting myself on the back for that one because a lot of people told me I wouldn’t be able to do it.

But I continued down the narcotic and anti-nausea drug road, mostly going through the motions of life – except for when I travelled. I love travelling!

It wasn’t until July 2019 that I started to turn things around. I was in a LOT of pain, went to the hospital, but this time I walked into a hospital that had a dedicated women’s clinic. The doctor in the ER took me 100% seriously, and even gave me some new insight into how sexual trauma (something I’ve experienced) can contribute to chronic pain. She gave me something non-narcotic for pain, and set me up with a new gynecologist who worked out of that hospital. I had an appointment the next day and this guy took me seriously, for the most part, and agreed that surgery was necessary. So I went back under the “knife” in September 2019. Three years after endometriosis had been discovered in my body. It’s stage III, growing too deep (but not through) a part of my colon to remove safely so it has to be left there, and on other areas of my abdomen.

The treatment options are still totally unacceptable to me.

I’m not getting pregnant (until I want to). Not getting a hysterectomy. I’m not going on body altering hormones that will fuck my day up even more than my natural body already does. And I’m sure as hell not taking narcotics anymore.

In July after the visit to the hospital, I had a weird wake-up call where something inside me said “enough is enough”. I stopped taking any pain medication stronger than Tylenol or a mild anti-inflammatory that by mid-August. And I just made that sound a lot easier than it was. Yes I did it cold-turkey, yes I hid it from a lot of people until very recently, no it was not easy. It was fucking hard. I went to a comic con (Keystone) in Philadelphia on a nerd-fueled father-daughter trip with my dad in August where I saw and met some of my favorite actors from two of my all-time favorite movie franchises while basically going through withdrawal. Plus, I had a flare up that weekend.

Honestly one of the best, coolest weekends and experiences ever though.

I even got to make a lovely little girl super happy. So overall, totally worth the pain of doing things while going through a hard time.

Anyways, that’s the diagnostic story.

Like a typical endometriosis diagnosis: I’m sorry it’s so long.

Thanks for reading!

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