Identity Crisis – redefining who I am after endo and UC

Feeling lost from auto-immune diseases

I know this sounds utterly drama-tastic but I literally feel like Im having an identity crisis. Over the last few years I had built myself up to be the strongest, most positive person there was. I was exercising every day, eating a whole food diet, and happy as a clam. I had found the love of my life, managing somehow to make long distance work. I found the most incredible job that allowed me to shine, and I moved back to Canada for it. Then shortly after my move, the endometriosis pain kicked in in places I had never felt it before. I was so fortunate to get a referral and acceptance into the BC Women’s Pain and Endo clinic but that was probably for me, the beginning of of the end. I was put on the wait list for the excision surgery and I was very diligent about an endo diet to control the inflammation and bowel movements until the surgery. I was asked to skip my periods, and therefore take Visanne which I was always reluctant to do. The hair loss started and the spot bleeding was equivalent to period pain at first. A few months later, the biggest bout of what seemed like a terrible flu accompanied by bloody, mucousy diarrhea with uncontrollable urgency sent me to the ER with a hospital stay of 10 days to confirm I had moderate to severe UC. I would have gone home earlier but the first round of mesalamine didnt work (I was pooping them out whole) and they had to try a different brand.

Since my UC diagnosis I have been on a low residue diet which – if any of you are on it still – is the OPPOSITE of an endo diet. Its literally high carb, high protein, NO FRUITS OR VEGGIES, no lentils, nothing with fiber. Do you know how utterly counter intuitive that is for endo????

4 months later, both doctors squabbled over whether I was in good enough shape to have the excision surgery. I was mad at my own body for putting me in the situation where the inflammation may prevent me from having the best surgery of my life. Needless to say I was able to go through with it, and it ended up being much more extensive than anticipated. The good news is, its mostly all out. The bad news is I feel like between the scar tissue on my colon and the UC itself, I actually dread having a bowel movement. AND I think the worst part about it is every morning I wake up with what I like to call a bolus of poop just hanging out in my lower colon waiting until IT is ready to come out. Nothing I can do about it and it looks and feels exactly like endo belly – so really I havent come that far yet.

Im trying to be patient. Im trying to be positive. But I am honestly no longer the person I was a year ago. I can barely walk for 20 minutes. I have to be so careful what I eat, not to mention alcohol is out of the picture (plus or minus a beer here and there). Im in pain constantly. Im tired constantly. And for the first time in 10 years I think I may have to up my anti-anxiety meds just because of how much is going on. I have missed so much work and I HATE missing work. Im a Director of Sales at a start up company in BC that is gaining tons of momentum and yet, I feel like Im the bottle neck. I do realize that “I am not what I eat”, and that this will take time, and hopefully once the inflammation has gone down I wont feel the endo pain again, and my UC will eventually go into remission. But for now… especially for RIGHT now… I feel like shit.

Thoracic Endo-pain confirmed

I have this belief that there are tons of people out there looking for answers about their endometriosis pain. And while the stats dont prove my belief that you are coming to my blog I still feel like I owe it to myself to continue to share my story. So here is my update from the thoracic endo pain theory I blogged about last time.

As it were there were two hospital visits in May/June that led me to further believe I was crazy. Throughout these two months I have had a clicking sternum which anatomically makes no sense, a very painful diaphragm that hurts all around – not just on the left or on the right like the literature suggests I would feel. And I have joints that are sore and losing weight. My bra straps keep falling down because my shoulders have lost weight (??) and I have to readjust my arms throughout the night because they click and clack in different positions. I love to run but my left hip is so sore. A dull aching soreness. All of this is above and beyond the usual endo pain in my uteral area which I just deem as ‘normal’ these days. What makes me feel crazy is the literature tells me thoracic endo is rare despite the hundreds of people that are members of the abdo thoracic facebook group. And they dont tell me anything about joint issues or staggered pain around my body. In fact nothing points to central abdominal pain.

Low and behold, as I promised my readers, this is a positive blog (not a venting blog). I finally got a call from the Pelvic Pain and endo clinic here in BC. My doctor, who shall remain nameless, was absolutely wonderful. Thorough, knowledgeable, and took the leap of thinking outside the box to connect the dots. First she demonstrated that my hip pain was not uncommon and she actually pointed out pain triggers I didnt even know I had. Next, she divided my abdomen in 9 quadrants (is it considered quadrants if there are 9 of them?) and actually showed me that my pain actually was on the left side, all the way up to my diaphragm/ribs!!! (and not really in the center as I was feeling it superficially). She then went internally with her fingers at first to indicate what sides hurt. We diagnosed that my pain is truly radiating to my abdomen despite both our surprise. Then with the internal probe we were able to see the movement of my ovaries (or lack thereof) to determine that my Stage II endo involved endo on both my left and right ligaments. Good news is I do have some eggs left in those beautiful ovaries if I do decide to use them.

So back to the thoracic theory. Some of the pain is due to radiating chronic pain, and some of it truly does seem to be due to endo tissue adhering to the bottom of my diaphragm. This area is tricky to remove endo from so I dont see it being cured any time soon. But… it really is a wonderful thing not to feel crazy anymore.