“The battle’s done and we kinda won, so we sound our victory cheer. But where do we go from here?” – Where Do We Go From Here from Buffy the Vampire Slayer’s “Once More With Feeling”.
Nothing about chronic illness is simple; not finding it, not treating it, and certainly not living with it. How you feel about it evolves in short periods of time and the questions you have in those early stages after diagnosis come thick and fast which can be overwhelming beyond all belief. For me the crash came when I realised that I didn’t feel how I expected to feel about my endometriosis diagnosis. I had expected after a year and a half of waiting to be able to even afford my surgery, during which I doubted myself frequently and questioned my sanity more than once, that I would feel good about finally having some answers. My last post on the subject indicated to me that at the beginning I was, I was relieved to finally have a name for it. But it’s everything that comes after that which makes it hard. The question that inevitably comes up is: what now? Where do we go from here?
My post-op appointment just five days after surgery answered the much anticipated question of whether I had endometriosis and added another possibility: indications of adenomyosis from my surgery. The surgeon sent me for an MRI to investigate further (more futile attempts to insert an IV cannula into my apparently veinless arms). I hadn’t really had a chance to ask too many questions at this point, even though I had so many, but assumed there would be time later. I know little about how specialists work even now because this is still all new to me, and wish I had known more about it so that I could have prepared myself for what happened next. The Monday after my MRI the specialist’s office called and one of his secretaries delivered the results: no signs of adenomyosis. She didn’t schedule any follow up and commented to just come and see them again if I ever needed to. I panicked because I was so surprised and just stammered a “sure, thank you” and let her end the call. But suddenly all my questions were unanswered and I didn’t know what to do, what was going to happen next. I had a Mirena IUD inserted during surgery as a treatment method to slow the growth of new endometriosis and to prevent pain, but that to me seemed like one aspect of the treatment. I wanted a game plan, a solid strategy that would help me through the pain because that’s the kind of person I am. Now I don’t blame my surgeon, he’s been amazing and lovely and from his point of view he’s done his job. But I still want him on my team, on my side as someone to talk this through with because at the moment I feel like I’m in the same place. I made it to the other side of the glass window but everyone has already left the room. I want to know where to go next. I know if I turned up in his office and said all this he wouldn’t turn me away, but in general before I really get to know someone I have an irrational fear of annoying them or wasting time. Deep down I know it’s ridiculous but on the surface it guides me to keep things to myself which so far has not served me terribly well.
The holiday break has no doubt complicated things too, surgeons like to tie things up for the year in nice packages and I’m done nicely with the delivery of that MRI result. I remember an allusion to some kind of 6-week follow up, so my plan is to keep that date even if they don’t. One thing I’ve learnt after all this time fighting to get my answers is that I should trust myself. I doubted my pain up until the day of my surgery; as I lay in that holding bay waiting to go into theatre I kept thinking: this is stupid, you’re wasting everyone’s time and money, they’re not going to find anything. I was completely wrong and so I’ve learned to trust the process and trust my gut instinct, which is maybe why I was so quick not to put up a fight. I need my questions answered so I know what to do next.
Something happened in how I see my endometriosis in the past 16 days, I went from being relieved that I finally having an answer to resenting it. The treatment at the moment means dealing with some pretty significant pain and swallowing strong pain medication which only makes me even more exhausted. It messes with your emotions too and can blow things out of proportion when you’re trying to remain calm and level-headed. I recall one afternoon a few days ago when the pain had reached a whole new level of hell, and I didn’t have any Tramadol on hand, sitting on my bedroom floor crying and whispering: “take it back, I don’t want it anymore.” I know I was saying this because I had asked for it, I wanted it to be endometriosis so I would have a reason for the pain because I couldn’t handle another second longer of having no reason. How does the relationship change so quickly? I think it comes from imagining your life and future with the disease and being okay with that comes from knowing what that future is. When I look I can’t see what it looks like yet, whether it will grow back and I’ll need more surgery, whether I’ll need help conceiving children, or if prescription pain killers will play a major role. In order to see what the future looks like in my head, I need to ask these questions and I need a team so I have people on my side. I’ve been so grateful to find a social networking site just for girls with endometriosis because it’s a beautiful community full of support and it grows every day. Knowing you can vent or share with people who understand is incredibly valuable, and so far it’s helped me get through some hard days.
So where do I go from here? The surgery is over and I kind of got what I wanted and yet I feel unfinished, the journey has only just begun and yet I’m already feeling alone. When so much has happened so fast the hangover leaves you with hospital bills, pain, and a slowly healing reminder of everything you’ve been through in the form of a scar. To further quote from the aforementioned Buffy tune: “why is the path unclear, when we know home is near? Understand we’ll go hand in hand but we’ll walk alone in fear”. I cannot be alone in this anymore, so my goal is to not be afraid of asking for what I want. I want answers, and I want to read them for myself with assistance. I speak the jargon so I want to see the reports, the radiology summaries, the notes from the procedure. I want to see what the surgeons thought as they looked upon the endometriosis because that will help me understand. Then perhaps finally, I’ll be able to see what the future looks like.
Wishing all my endo sisters a pain free weekend.