Now I need a specialist???

  As I’ve said many times and I’m sure I’ll say plenty more, for the next few months I waited and completed so many more tests. 

I tried my best to live my life, I started planning ahead, making escape plans, bringing all of my gear with me everywhere. I did whatever I could to not let my life get affected by this unpredictable pain. Over time, I did get better at stopping the bigger flare ups. I had to cut back severely on my activity. Basically one big event a day, I needed a nap sometimes or at least a few hours to lay down so my body could rest. Even tho I was able to manage pain better, I noticed I was exhausted more. Lifting my body out of bed became a huge challenge, keeping my eyes open all day was a mission. By managing my pain, my stress levels were so high from constant worry, being on edge all day took a huge toll on my body and energy levels. Body aches became the normal again. My fake smile was firmly back in place to keep everyone in my life happy.

There were many times I missed events or my mood was so affected I snapped. The pain was relentless, but my smile was perfect. For a time. Then I couldn’t fake it anymore and I would break down. I was not handling life well. Endometriosis had taken my body, my social life, my work life and now it was coming for my sanity. 

I wish I could say people get it and are understanding. They realize how much effort you put in to hide your pain so that it doesn’t affect their day. But they don’t. All they see is when you break and wonder why you are so upset. They don’t understand you are exhausted, tired of waiting, tired of justifying yourself, tired of the fear, lack of sleep and most importantly, tired of pretending you are fine. I try to take it with a grain of salt, but at the time, it’s very upsetting how ignorant people can be. People close to you, who know about your condition, probably won’t even take the time to learn what it actually is. That’s the sad reality. 

But I made it! My appointment had finally arrived. I was prepared to let my doctor know all about the new pain issues, all my tests results etc. I figured, since they had found it last time and believed me, they would schedule surgery right away and keep trying. I walked into that appointment with high hopes. 

It didn’t take long before they were crushed. 

With my new information, my doctor said almost immediately, “this is beyond my skill set and knowledge. You need a specialist”. I think I just starred at them for a minute. Wait what? You can’t do anything? Why? Please try! Don’t make me find a new doctor. 

My doctor explained, mind you, most of this is guess work from their non specialist opinion, that I had D.I.E. (Deep infiltrating endometriosis). The name itself made me cry. They explained they were more of a general surgeon and due to what they saw in surgery the year before and my new symptoms, they couldn’t help me. Of course they would send out a requisition to a specialist for me, but that means I’m back to waiting and praying to be accepted. To make matters worst(I live in Canada) there are only so many specialists in my province. Maybe 30, but there were thousands of other people like me begging for help. So the wait list is stupid long, that’s if they accept you as a new patient at all. They sent out one requisition to a specialist. And that was that. Now I waited again. Would they take me? Who knows.

I cried. I cried the whole drive home. I felt defeated. I was back to square one of finding someone to help me. What’s worst, they said they would not help me with strong pain medication. Insisting Naproxen and Ibuprofen can help(they don’t). Doctors, for some reason, refuse to prescribe anything. I asked for small amounts, as emergency only. I asked for a daily anti inflammatory etc, no, is what I’m constantly told. So for each extreme flare up, when I’ve decided I’ve suffered enough, I have to drag myself to emergency. Wait hours to be seen, deal with condescending male nurses and wondering if the doctor will believe and help me this time. I’ll get a shot of Toradol and feel better. Sometimes I’m good, other times I’m back after a few hours. But it’s the same dance. Pain, wait, decide if it’s bad enough, get to hospital, wait, justify my being there, wait, wait, medication and finally relief. I know my body now. I can tolerate a lot of pain. I’ve also lost hope in the emergency rooms. Covid and shortages have made it pointless for me to show up unless I think it’s something new and not my endometriosis. So recently, I stopped going and stay home and ride it out. For minutes, hours or days. 

I wasn’t giving up yet. A few days later, I called my faithful nurse practitioner, I knew I could count on them. We decided together that we would send out two more requisition to other specialist. In hopes of getting accepted faster and sooner.

So the new dance of finding a specialist began.