I always start off these articles proposing that perhaps blogging is dead. But for me this is truly therapeutic in putting my journey out in the open. Remember that not only do I have thoracic endometriosis but I also have ulcerative colitis, and as everything swells together it is extremely difficult to discern my diaphragm from my colon from my pancreas which tends to flair on its own accord.
On September 10th, a normal Thursday, I had another Entyvio infusion. I was a bit worried about this one, as the last month’s infusion sparked up a pancreatitis flair. A few days after my infusion – which sometimes causes this dull ache in my colon during the infusion itself – the dull ache starting morphing into a prominent ache. One in which it was telling me something was severely wrong. I then had one of the most painful bouts of diarrhea I have ever experienced. I was up at the cottage that weekend and all I wanted was to come back home, and crawl into my bed. So I did.
But the pain wasn’t stopping. In fact, the location was staying consistent (right below my ribs where they join) but growing in intensity. By Tuesday afternoon I was in agony. For many, many months starting before the pandemic, I vowed that it was not worth ever going to the hospital for pain because I’d much rather suffer in my own bed than endure hours of poking and prodding to end up empty handed and in tears. But right at that moment, 3pm on a random Tuesday, I succumbed to the hospital. I grabbed a hoodie and my purse, kissed my fiance and walked out the door. Call me a sucker, I sat in the waiting room hoping this would go by quickly. I will say in the face of positivity, the hospital was quite quiet, so things did move along at lightening speed. I was inside emerg within a few hours, and saw the doctor right after they put me in a room. The doctor came in to examine me, asked all the typical questions and then poked. When he poked at the location I described to you, I winced. When he poked at my ovaries; nothing. But when he poked at what he claimed to be my appendix I cried out loud. I didnt even know that spot was tender until he poked at it, but boy was it tender. He asked if he could do an internal to check my ovaries and then concluded he was ordering an ultrasound and some pain meds. I went and sat in a chair, waiting for pain meds. They were marching in with what I knew to be morphine so I stopped the nurse and asked her for a hydromorphone drip. She came back with a hydromorphone pill which I know doesn’t work. And it didnt. It just never does. But here we go.
I was asked to drink tons of water in preparation for the ultrasound and then was taken to the US room before my bladder was even full. Nonetheless the US tech began the process and spent a great deal of time around the right side of my abdomen. She then moved her way down to the pelvic area and asked if she could do an internal ultrasound. I felt like it must have been 45 min that she spent on me and was very thorough. When I went back to Emerg, the doctor who was seeing me had vanished. I was in more need of pain meds, and I sat there anxious and twitching to ask someone for more meds. Finally, I got up and asked a nurse. I explained once again that hydromorphone doesn’t work, I cant have morphine, so please give me a hydromorphone drip. Instead, they gave me a pink lady and told me to wait half an hour to see if it worked. IT DID NOT WORK!! I was all excited when – maybe half an hour after that – they took me to the IV table but it was because the US results yielded inconclusive results and they ordered a CT with contrast. No hydromorphone drip. I marched over to CT, and had my scan done. Once again, I sombrely marched back to emerg and sat my ass down waiting for more answers. I had blood work done, a urine sample done, an US and a CT by this point, and it seemed like everyone was on the appendicitis train.
Remembering that I arrived at the hospital at 4pm and now it was approaching midnight, I was out of energy, starving, cranky and in so much pain I was beginning to get numb. With every last ounce of energy I had, I begged nicely for a drip. Through the IV, they gave me some Toradol. Ugh. I gave up trying at this point. I sat there, for what seemed like forever, in a pain haze, and waited. After some indiscriminate time had passed, a nurse came to check up on me, along with a new doctor. He asked me to follow him to his computer. He told me that I did have some ovarian cysts (what else is new???) but that all the scans came back negative. I appeared to have a perfectly happy appendix. Moreover, he could not determine what could be causing my pain. So, I politely asked him what the chances were that it was endometriosis and he said plainly “I wouldn’t know”. As a gift for coming in, he told me they would be swabbing me for covid due to my abdominal pain being one of the symptoms, and that I would need to self isolate. Fuck me!
I cried hard that night. I cried until my body was completely void of all feelings. I cried as I left the hospital, as I paid for my parking, as I hopped into the car and drove 25min back home. I cried as my car sat idle in the garage. And then I stopped crying. I wiped my tears, I went inside the house, and I slept.
The next morning, I was angry. I was angry at the negative test results. I was angry that I was still in pain. But mostly, I was angry that “I wouldn’t know” was an acceptable answer to an emergency doctor who should have given me more than half a second to understand my endometriosis. I was mad. And yet, there was nothing I could do about it.
I have spent the last week building myself back up from that. Reassuring myself that I know I have endometriosis and that I will have answers during my surgery (mixed with, OMG what if the pain really isn’t from endometriosis). I have walked away from negativity as best I can in preparation for my surgery. But I assure you, when I am a bit stronger, I will be fighting the system a lot harder!