The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis

I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back and forth – never a dull moment! For those of you who have both diseases and potentially have diaphramatic or thoracic endo pain, you know that the localized pain is very similar in location and intensity to your UC pain. Lets see if I can explain with an image…

female pain points v2

The image above is a great depiction of the internal female body, and the areas that are most affected by the two diseases. I have tried to do a mock up of where my pain areas are (pink = endometriosis; orange = ulcerative colitis). As you can see the areas that I feel endo pain are very similar to the areas I feel UC pain. For instance, I have endometriosis on my ovaries (not shown here) and adhesions on my left ovary which impacts my left sciatic nerve. However, after my entyvio infusions or during extreme UC flare up, I feel intense joint pain in both my left and right hips. While my diaphragmatic endo pain appears to be quite higher up than the upper colon pain these areas truly are close together when you are trying to discern one from the other.  And lastly, pain in abdomen and areas neighboring the abdomen caused referred pain up to the right shoulder.

Note: I also dont have a gallbladder so this is why there are complications between my liver and my colon, and why I take bile salts when I remember to.

Some good news though!

  1. Today I had my very first firm, intact, pain free poop in 3 months!A shout out to the ‘Ulcerative Colitis’ facebook group who confirmed that it IS possible to start feeling and seeing results after only two loading doses of Entyvio. I was worried at first because after both first and second loading doses I was feeling abdominal pain that eventually subsides; with the last loading dose causing extreme joint pain. When my UC joint pain subsided I was unfortunately left with sciatic pain from my endo,… but whose counting really?!? *insert eye roll here*.
  2. I am on schedule for my excision surgery on March 12th with one of the best doctors in the industry. It will be a long and drastic procedure that will aim to remove endo from the typical places as well as up near my diaphragm. The only thing that could stop the surgery from happening is if I have a flare up but Im doing everything in my power to prevent that from happening! I am so excited!
  3. I need a third positive thing…oh.. i know! I just added eggplant in my diet!


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.