(Okay this isn’t *that* related, I just really like this AHS gif of The Name Game from American Horror Story Asylum)
Previously I wrote about the identity crisis that comes along with chronic pain and being in “disease limbo” and the emotional torture that comes with suffering pain but having no name for it. You’d be exceedingly surprised how empowering it is to have a name for something wrong with you. Patients with mental illness often talk about the relief they feel when someone gives them a name for everything that has happened and I can see why. I sat in my specialist’s office this morning and finally I have a name. The game is over and something else has just begun, and yet I am happy.
Last Wednesday I finally had my exploratory laparoscopy in the hopes that I would finally have my answer. When I woke up from anaesthesia I had a moment that for days I would struggle to remember if it was real or imagined, and it turns out it really happened but I got the faces wrong. What I thought I remembered was waking up and asking the anaesthetist “did they find it?”. My brain, despite many many drugs, only wanted one thing: answers. I thought I heard him say yes, and I spent four days desperately trying to remember. This morning my surgeon very helpfully put me out of my misery by confirming that yes, that did happen only it was him I was asking not the anaesthetist (oops, anaesthesia). He found endometriosis and adenomyosis, and so I finally had my name. I know a lot of people wouldn’t consider this to be super good news, but to me it’s everything. To have a reason for the pain that plagued my adolescence and has followed me into my twenties is absolutely everything to me. I’m not in between two glass windows anymore, I made my way to the other side and it’s okay here for now. I have a sisterhood of amazing women around me through the support found through hardworking and amazing organisations such as EndoActive and Endometriosis Australia. The online community is a place of great comfort with so many people sharing their stories via blogs and vlogs, so consider this my drop in a vast ocean.
The surge of relief I felt this morning has protected me so far from anxiety, I’m almost certain it will come later once the relief has worn off and the reality of my situation sets in. But I’m okay with that. I can’t regret finally getting my answer, because it’s what I wanted. I was more afraid I would wake up with a dizzy head and still no reason for why I hurt so much. I spent many a night wondering if I was crazy and no one should have to question their sanity because society tells women that their suffering is normal. It dawned upon me surrounded by some of the most wonderful nurses and doctors last week that so many of them understand and are willing to help, despite stories I’ve heard fellow sufferers tell. For every doctor that brushes one of us off with a “just go on the Pill” or a “it’s all in your head”, there is a surgeon like mine who didn’t need to be convinced because my pain did all the talking. You shouldn’t need to convince people that your pain is real, and if your doctor doesn’t take you seriously find a new one. There are people out there who can and will help if only we ask. So please ask. I was scared (okay…petrified) before I went into theatre but when I came out and realised it wasn’t horrible, I knew I had done the right thing. Today as I sat in my surgeon’s office and he showed me the proof that I had endometriosis I felt liberated, and I it reassured me that the whole thing was worth it: from the hyperventilating as the anaesthetist tried to find a vein for my IV to the anaesthesia-induced stupor I woke up in where I couldn’t remember what was real or imagined. Totally worth it, and I’d do it again and maybe I’ll have to depending on how bad this all gets but for now I’m taking comfort in my discovery.
Identity crisis, solved.