Ever since I started my period at the age of 14 I have suffered from tremendously painful, heavy periods. I knew these weren’t normal but conversely I didn’t think they were medically alarming. Until one day I was admitted to the hospital from the extreme pain to learn that one doctor and one nurse believed I might have a disease called ‘endometriosis’. A disease! It wasn’t until 15 long years later (and many packages of birth control and negative pregnancy tests endured) I was officially diagnosed with endometriosis. Through laparoscopic ablation – a technique long outdated but sadly still performed – it was revealed that at age 29 I had endometriosis on several organs. After the removal and a few different life altering events I vowed for a fresh start in life, and moved to LA. I vowed to live life to the fullest, and be the best version of myself that I could be. Which I did. And I was. Until life took me to Vancouver (back to Canada) and while the events were unrelated, the endo pain came back with a vengeance. While I was mentally preparing for my next laparascopy (excision) surgery which would reveal that endo had spread all the way up to my diaphragm, I go hit with the flu and struggled it out for a week until I succumbed to going to the hospital. What I thought was the flu ended up being the tipping point for severe ulcerative colitis that seemingly hid behind the digestive symptoms of endometriosis for many years. I surpassed the opportunity for suppositories or oral tablets and was given steroids and a biologic that has been a good fit for the last few years. Now, I sit in the clinic once every four weeks to receive my infusion on top of everything else that I’ve been dealt.
The worst thing about endometriosis is the lack of knowledge, funding and empathy. Ok, thats three things. But they make up one big problem. As a patient, there is a fine balance between knowing enough and knowing too much. So I tread lightly, express my opinions and when I need to and succumb to the doctors if it lets me progress in my treatment. It hasn’t been an easy road and I have now pretty much done it all. Some things I didn’t think I would ever do, of which some turned out horribly as expected and some things surprised the hell out of me. So I keep pushing, and advocating for myself. I chronicle everything here in hopes that my self advocacy can give you the courage to advocate for yourself!