The Bullshit Diagnostic Process

I apologize in advance, this post is long.

Endometriosis is insane. I think iv’e mentioned this before.

My diagnosis took a very long time, and still isn’t really over. I was one of the “lucky” little girls to get her first period at 11 years old, in the 6th grade, which is on the younger side of average. I immediately had “stomach” issues, but it took a little while for my parents and I to realize that there was a correlation to my feeling unwell and my period. I had years and years of these “stomach” issues, multiple doctors visits, allergy tests, episodes of weird illness, both at home and at school, never with any answer. Doctors did blood tests, ultrasounds, other uncomfortable tests that females have to endure without any results. So we were told that I had a stomach acid problem. Later on we were told I had IBS/IBD. Yet none of the so called “solutions” to these problems did the trick.

When I was 21 years old, I was starting my post-secondary school journey over again. I had given a college program a try for about a year and a half, decided it wasn’t for me, and went in a new direction (specifically to Wilfrid Laurier University). I actually loved my new program(s) – I quickly became a double major – so I guess it was the right decision! I lived in residence my first year at Laurier, on a floor specifically for people with similar interests to mine. One Saturday in March we went on a floor trip to the Royal Ontario Museum in Toronto, and even though I adore the ROM, I was feeling off all day long. On the bus ride back to campus I really wasn’t feeling well at all and started to feel like I was going to fall asleep.

Giving into my extreme and sudden sleepiness, I went to bed as soon as we got back to the dorms – it was only about 6pm. I fell asleep right away, which never happens. Then all of a sudden I was woken up by what felt like someone stabbing me with a hot poker in the right side of my abdomen, this was about 6am.

I was used to abdominal pain, i’d had it for years. So I assumed that this was another little “IBS” episode, or gas, and attempted to change positions and go back to sleep. I literally ended up doing yoga in my bed. I turned on Gossip Girl and kept changing to more and more awkward positions, trying to distract myself from the pain and squeeze out what I thought was gas. I managed to do this for a few hours, until 8:30am. At which point I gave up the natural way and opted for medicine.

Like I said, i’m used to abdominal pain. But I had never felt anything like this before. I stood up, or should I say tried to stand up, to get some Gas-X from under my cabinet and I collapsed. I couldn’t stand up straight. I don’t even remember my legs being able to work properly. My cabinet was only about a meter away from my bed, so it’s not like it was a far crawl, but I managed to get the medicine and drag myself back to my bed to take it. I gave it about 30 minutes to work before I couldn’t stand the pain anymore.

I honestly have no idea how I managed to call a cab, get in the elevator and go down to meet the cab that took me to the hospital. I was hunched over the entire time, pretty much crying and not being able to stand up. I thought that I probably looked like The Hunchback of Notre Dame to my cab driver.

By the time I got into the ER to see the triage nurse, I was crying and I felt as thought my side would split open if I took my hand off of the right side of my abdomen. No one knew I had gone to the hospital. I shared a bathroom with someone but I had been to the hospital so many times in my life, usually with the doctors sending me home not knowing what was wrong, I opted not to say anything to anyone. I was under the assumption that i’d be back in my dorm in a few hours after an IV for pain and some unremarkable tests.

That was not the case.

I got to the hospital at 9am. Was but into a waiting room – an empty waiting room – and proceeded to wait for over 2 hours. The pain in my belly was fluctuating, but at some point it got so bad I decided to say “fuck it” and I got off of the chair and huddled myself on the floor in a position that felt more comfortable. I then proceeded to bawl my eyes out.

A passing nurse heard or saw me, and popped her head in to tell me to get off the floor, at which point I ignored her and continued to just wallow in my own pain and sadness. She obviously got my hint and left to get the doctor and other nurses. They lifted me onto a bed in some random room that magically became open at that point, and within 20 minutes I had an IV that was delivering saline, dramamine, and morphine into my right arm. One of the nurses checked my vitals and chart, turned a little TV in the corner on, dimmed the lights and left me in the room alone for what felt like 4 more hours.

I could feel the pain through the morphine, but it definitely took the edge off, so I was able to watch HGTV with a small degree of comfort. Aside from being in a creepy hospital room. By myself. In the dark.

A nurse came in after a while to take me to an ultrasound I didn’t know I was getting. The nice thing was that since I was on an IV of some pretty strong sleepy-juice, I didn’t have to walk. Instead I was portered directly to the ultrasound room in my ER bed. We did the test, and I was delivered back to my tiny dark room and continued to watch HGTV for a while longer. I didn’t actually know that someone could watch that many episodes of Say Yes to the Dress and stay sane. Maybe it was the morphine.

A very attractive and young doctor came in just as I was starting to get irritated with having no human contact.

He asked me some questions about my medical history and my pain levels were, pushed on my belly a bit and told me that my bloodwork was OK but the ultrasound showed an increased amount of blood-flow to the right side of my abdomen. He said that my symptoms were not 100% consistent with appendicitis, but there was enough overlap to consider surgery.

Let me tell you, I was SHOOK.

Literally NEVER had a doctor taken me seriously. And my ultrasounds showed increased blood-flow to that particular area in the past. Still, this was the first time anyone had looked me in the eyes and said “we will figure this out”.

No one knew I was in the hospital. It turned out that my bathroom mate (FYI she was/is also one of my best friends) thought I was dead in my room because she hadn’t heard from me or saw me all day. I never texted or called my parents either, but they were an hour away from where I went to school. I figured there was no point in worrying anyone until I knew what was going on. Honestly they had labelled me a hypochondriac after the years of being told nothing was wrong with me, so I really didn’t even want them to know what was going on regardless of the pain level. I didn’t want to risk a lecture about how it was all psychological.

It was now 3pm and a new nurse came into my room to admit me to the hospital. The plan was to keep me overnight for observation and reassess in the morning. I decided that I should probably tell my bathroom mate/friend where I was, since I had now been silent since 6pm the day before. I asked to use the hospital phone, my cell had no service, and called my residence don, who told my bathroom mate what was going on. The two of them paid me a visit at about 7pm, right before visiting hours ended to give me my phone charger and lip balm, and scold me for not telling anyone where I was. We also had a good laugh at my loopy behaviour due to the morphine I was still on; I think there is still a video of me moving up and down on the hospital bed like an Egyptian mummy rising from a sarcophagus somewhere.

When they were gone I experienced the scariest night of my life so far. I was alone, with no insurance so I was in a ward room in the surgical wing of the hospital. 3 other people who were recovering from surgery were in there, only light curtains divided us. There was constant beeping from the heart monitors and IV drip machine thingies. At some point in the night I woke up in a lot of pain again, feeling so ill that I ended up projectile vomiting all over the end of my bed (I know, TMI right?) and had to call the night nurse. She changed all my sheets while I stood in the corner of the room repeatedly apologizing and shivering. I didn’t really sleep that night. Instead I watched Netflix on my phone and listened to Native American and Tibetan flute music that was supposed to help with anxiety and sleep. I think I fell asleep at some point but honestly I only remember feeling drugged and sick all night.

In the morning the nurses took my blood, vitals, and asked me how the pain was. A surgeon came in to push on my belly again, and when I started crying again despite still being on morphine, he told me that I would be having surgery that day. That prompted me to text my bathroom mate and don, and finally call my parents. This time they couldn’t argue with me. My mom picked up and I had about 3 minutes to tell her I was having abdominal surgery and that I had been in the hospital since 9am the previous morning. The nurse came in while I was talking to her and said “you’re going now”. I pretty much had to hang up on my mom and get wheeled down to surgery. Apparently I didn’t tell her what hospital I was at.

When I woke up from surgery, I had an oxygen mask on which made my nose feel like I had been outside in a snow storm. Apparently I had some slight breathing issues waking up, so they kept the oxygen on me for a few hours. My parents were both there by then, and surprisingly so was my bathroom mate/friend, my don, and another friend from my floor who found out what was going on and decided he would come along. I said hello to everyone, making sure to prove I was alive, and thanked them all for coming to see me. Then I was given some green jello, a bit of a walking test, and the all clear to be taken home with my parents. While they went downstair to the pharmacy to fill my pain and antibiotic prescriptions, I got the surgical report from my surgeon.

I didn’t have appendicitis.

Instead, I was told once again that there was nothing really wrong. Except that there were spots of what appeared to be endometriosis throughout my abdomen. It was growing on my appendix, causing inflammation of the teeny organ and making it very angry. I, like many others, had heard of endometriosis before but didn’t really know what it was. My first association was infertility and I immediately asked the surgeon if that meant I wouldn’t be able to have kids. His only response was “not necessarily. I can’t tell you anything other than that, you will have to make an appointment with a gynaecologist for more information and treatment”. Then I was released from the hospital and taken home with my parents for the week.

I did make an appointment with a gynaecologist. It took me 3 months to see my family doctor, who apparently HAD to be the one to make the referral, and she was very busy, and I was normally in a different city for school. Then it took me 6 months to even hear from a gynaecologists office. Another 3 or 4 months to get in to see the doctor, with literally no result. I asked my new doctor about treatments, removal, etc. on top of doing my own research on the disease. Without even looking at the appendectomy records, my new doctor decided that all of my symptoms matched endometriosis. She also told me that I should get pregnant because there were a lot of cases of women with endometriosis being OK after pregnancy. I WAS 21, SINGLE, AND A STUDENT. Not cool. She also told me to continuously take birth control pills, to never get my period. Or a medication that brings on a false menopause. Or get a hysterectomy, but then I obviously couldn’t have my own children naturally. She also said that I wouldn’t know about any fertility issues until I actually tried to have a baby, and refused to do any additional diagnostic surgery. She said that taking pain medication was what we could do for the pain.

This was absurd because I only had a rough surgical identification of the disease, no information at all about the stage or where exactly it was growing. I left her office no less confused than I was before, but I assumed that I would just continue being on the pill and take some pain meds when needed them. But I wasn’t counting on the pain getting much, much worse. Iv’e had other opinions since seeing that doctor. But no one was willing to do any more surgery or offered any new or helpful information.

Honestly, for a while I was a little depressed. I even briefly went on antidepressants, which I quickly decided I hated and went right back off of them. Stuff really started to change for me in March of 2018, last year, my 3rd year of university. I had to be hospitalized for a C.difficile infection due to being on too many antibiotics in a short amount of time, a result of a few doctors thinking I had multiple UTI’s when I complained of bladder pain – which I now know was still just the endometriosis. To be clear, C.difficile can be fatal when left too long. And by the time I went to the ER (after finally deciding that this was not just an ill feeling from endometriosis) I was cutting it close. I was bleeding from areas people aren’t supposed to bleed from. I was pale as death. I was getting sick every 30 seconds. Freezing, hot, running a fever and sweating buckets. And I was in SO much pain. I happened to be at home on break at this time, so my horrified parents basically carried me into the ER. On the bright side, I now know my blood type is O+.

I spent most of March 2018 in that hospital recovering from this infection. I kept up with most of my school work, doing assignments and readings from my hospital bed. There was no way in hell I was letting a tiny could-have-been-fatal infection stop me from graduating. P.S. I did it. I’m graduating on-time this October 2019.

After being that ill, I had had enough. Doctors who decided to prescribe antibiotics first and do tests later are a problem. Doctors who don’t listen too little girls when they say that they have incredibly painful period “cramps” are unacceptable. Taking 8-12 years for an endometriosis diagnosis is bullshit, and giving a woman the choice between immediately having a baby to fix a problem or having a hysterectomy to fix a problem is bullshit. It’s all bullshit.

Because of the negligence of multiple doctors, I was unnecessarily prescribed multiple different antibiotics, to the point where I could have died. I was given different kinds of narcotics to take at home as a mask for the pain. I know that I have endometriosis. I don’t know where it’s growing. I don’t know what stage it is. I only know what it does to me. Every. Single. Day.

I’m 25 years old now. I JUST found a doctor who took me seriously again. I JUST found a gynaecologist who saw me quickly, and who wants to find out what’s wrong and how to help. Iv’e had increasing issues related to my period since i was 11 years old. We’ve known iv’e had this stupid disease since I was 21. Why are we only getting into the specifics now? At 25?

I started a GoFundMe in order to help advocate for and raise money for endometriosis research. If you want to help, please learn and spread awareness about this disease, and donate if you can. No amount is too small. If you’re interested, please click here.

You can also follow me on Instagram and Twitter where I post whatever I want to, and try my best to advocate for endometriosis.