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!

 

Skipping my period – the journey

Skipping Menstrual Periods Because of Endometrial Pain

After seeing an Endometriosis specialist in July, it was clear that my pain pathway was undeniable, and that the endometriosis was in fact back with a vengeance. Not only is my endo on both tubes, but the left tube is so sticky that is affecting my left sciatic nerve. This helps to explain the painful friction start to feel after only 10min of walking. Poking on my sciatic nerve through my butt cheek made me wince so hard, and in fact was a confirmatory moment in the re-diagnosis. Moreover, the endo IS on my diaphragm! This was the main reason I sought out to be treated at the clinic – to confirm I wasnt insane and to get some help with pain management.

I cried a lot before my appointment because I was worried I would not be taken seriously due to the fact that I am not trying to have a baby. I didnt want to be dismissed, and I certainly did not want the only option to be Lupron or other strong medications that would give me more side effects. But to my surprise the appointment was amazing. The doctor was very knowledgeable and looked into explaining all of the pain symptoms I am experiencing by triggering several places along the pain pathway. This helped us indicate which areas on the abdomen we problematic, how high up the endo is, and how severe the uterus is being affected.

The first step in treatment is to take my birth control continuously for three months to see if this reduces the pain by eliminating my periods. I was warned that spotting might occur, and pain may accompany, but that it would likely be due to the endometrium thinning out (which exposes the veins). The first few weeks went ok. By my calculations I was effectively able to skip one menstrual period without any hiccups. But about three weeks in I started bleeding; slow at first and then became clear that is was a period and not spotting. I went back and calculating when I was supposed to have my period just to make sure I wasnt just screwing up the math, but I confirmed this was not when I was supposed to bleed. The bleeding persisted – at full capacity – for two straight weeks, with tons of abdominal and diaphragmatic pain, and absurd facial acne. I was bed ridden for two whole days, and for the first time in my life, threw up because of the pain severity. (Throwing up in restaurant bathrooms is the worst!). And I was unable to clear my skin with any store-bought or natural products.

Finally a break… for 4 days, with a significant reduction in the acne, but the bleeding has continued again. I called the clinic nurse and she said I could either stop the pill for a few days to let my body bleed it out but this might create a lot of pain. OR I could wait a few more days and call back to switch to a stronger pill. On one hand I dont want to stop the pill because that might erase the 1.5 months I just put in. On the other hand I am already on a strong pill so what will more hormone do to me? Yes, I want the pain and bleeding to go away but sue me,… I also dont want to grow a beard. Is that so wrong?

I have chosen to continue on the pill and will call the nurse in 3 more days. Still bleeding, still in pain, the acne is back, but cant bring myself to stop now.