My Endo Treatment Journey · The Science

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.

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