How They Diagnosed Me With Diaphragmatic Endometriosis

As I navigate this journey I realize that there are so many people out there who are trying to navigate the same waters. So, I wanted to take a step back and share how I was diagnosed with thoracic/diaphragmatic endometriosis in case there are others who need this right now.

I had an ablation in 2012 putting me at the age of 29. I was trying to conceive with my then husband – to no avail – for a few years so the doctor who ultimately did my ablation was a fertility doctor who back then also treated endometriosis. An ablation as you may well know is like trimming the hairs without plucking out the root, thereby leaving the disease in tact. I was told at the time that I would have 3 months (3 MONTHS!) of a window to conceive before the endo would proliferate again. (Sidebar: I divorced the SOB so no conception for me). The doc told me that I had stage 3 endometriosis but he brought it down to stage 1. Whatever.

As the story goes, the endometriosis grew back and I carried on normalizing my pain like so many of us do. The pain was always predominantly in my pelvic cavity which is where I also had severe period pains, so my body – for the better part of my life – was so attuned to tightening the muscles in that area when it was the time of the month, to protect me from caving. I suppose it became second nature for my body to operate this way, I stopped taking notice to the pain I was in, and just ‘carried on’. I was in Ottawa, Ontario (Canada) originally and decided to pack my bags and move to LA. Los Angeles was the best time of my life, and I met some of the most wonderful people, saw the most wonderful things, ate the most glorious meals, ran every day and loved life to the fullest. Was I still in pain? Yes, but I stopped caring, which tells you that the pain was (cyclic and) manageable; not yet chronic. When I was in LA for those two years I had probably 5 bouts of bronchitis due to the air quality. They say that stressors like this can bring about chronic pain. They say it can be multiple small attacks to the system or one large one (like a car accident, for instance) that can all of a sudden be the tipping point for a body. In any case, I didn’t think much of it until I was forced to move back to Canada once Trump came into power in 2016. January 2017 I was in the car driving to Vancouver, British Columbia to start my new job, care for my dying dog, live on my own in a gloomy city while doing a long distance relationship across the country. The stress began to pile up and perhaps that was my tipping point rather than the bronchitis; who knows? I was situated in early January and by March 2017 I was in dire pain. It did in fact happen that quickly. I went from not noticing the pain, to the pain being chronic and intense. It was the same as the pain I’d been feeling before, but in addition to the pelvic cavity it was also below my ribs. I didn’t know much about the locations that endometriosis could be found but based on my own intuition I supposed a gynaecologist would be the safest place to start.

I had what felt like sciatica on my left side, ovaries on fire on both sides, and the same dreadful pain all the way up to my ribs. This time, it wasn‘t cyclic, though the cycle made it worse.

Call it the right place at the right time. I went to a walk-in clinic to speak to a physician and explain that the best care I could receive would be through the BC Women’s Pelvic Pain clinic where the doctors there would understand endometriosis. It was a combination of prior history of endometriosis + this doctor not knowing much about endometriosis + the desire to help me. While I sat in his office, the doctor submitted a referral to the BC Women’s and an appointment to meet Dr. X a few WEEKS thereafter. It was magical.

This is the part I want to spend time on though.

Physician Assessment: When I met with Dr. X I described the pain in the precise locations which seemed to all be connected in her mind. She had me lay on a bed, and with one of her hands under my left butt cheek, she poked my butt with her finger in the exact location I had the ‘sciatica’. According to her, the ovary can be fused to the pelvic wall which is innervated with a lot of nerves and can then emulate ‘sciatica’. Cool. Onto the ribs….

So imagine your abdomen divided into 9 parts. Draw a large square from the base of your pubic bone up to your ribs. Closing that square, divide into three equal parts horizontally and three equal parts vertically. Now imagine that your circulator system (the free flowing fluids) has a natural flow clockwise. Confused yet? Ok I have drawn an image below to help explain.

With this in mind, Dr. X gently tapped in each of these squares to better examine the painful parts as well as the muscle tension. In theory, the painful squares should be the ones coloured in above since the circulatory system would allow the endometriosis to spread in this clockwise fashion; the right diaphragm being afflicted before the left. Is this a theory? Sure is but it worked in my favor. I have included some citations below if you want to read more on this. Turns out my pain points followed this theory exactly. This was the very beginning of the notion that I had thoracic endometriosis with implication of the diaphragm being impacted.

Diagnosis: I did the rigamarole with pain meds and birth control but nothing worked and we quickly fast forwarded to surgery. In March 2018 I had a laparoscopic endometrial excision surgery by Dr. X where she stated I was at stage 3 but now down to stage 2. Again, whatever. The reason being was that she was able to excise the lesions throughout my pelvic cavity, colon, and bladder – with a left ovarian suspension – and was able to visualize AND cauterize the lesions on the diaphragm. I, like you, wonder why she didn’t excise them but that’s for another day. Ultimately, I had visual proof there was endometriosis on my diaphragm.

Removal: To add to the complications, Dr. X was not able to excise from the thoracic cavity so I was referred to Dr. S here in Ottawa (yes I moved back to Ottawa – for love, not for Dr. S), so that it could be treated and managed properly. Keeping in mind that the cauterization kept the endo at bay but didn’t remove it, the pain persisted over time and punctuated into a more robust surgery in Oct 2020. There, oddly enough, we didn’t see any endometriosis on the diaphragm which either means the suspicious spots previously cauterized were done very thoroughly or it wasnt endo. Without pathology we can never be sure. But, to add a silver lining to the story: whatever it was that was causing me RIGHT diaphragm pain is no longer there. Do I care if it was diaphragmatic endo or basically a bundle of pain caused by other factors? Not in the least.

Management: Throughout the course of management – as I intended to delay the surgery to allow Dr. S to be as productive as possible when the time for surgery arrived, and not to stir any trouble with the angry colon – we did a number of things. I was first on visanne which really bloated me. It didn’t, however, impact my cycle or the pain. One theory was that having ulcerative colitis may impact the absorption of oral medications through the gut. So, at that point I had the Mirena IUD inserted. Initially the IUD didn’t do much so we paired it with visanne to see if we could get a combo effect. Eventually I dropped the visanne, and after more than a year, also had the IUD removed as it was poking me inside. A few months leading up the removal of the IUD, I also explored Orilissa but sadly it was eliciting suicidal thoughts (not tendencies, just thoughts) so I stopped immediately. For several months leading up to the surgery I went back on standard birth control and skipped my periods.

Now following surgery I am still skipping my periods with birth control, and managing the central sensitization with amitriptyline. I also have a nerve block administered a few weeks after my surgery to mitigate this new nerve shooting I was experiencing. For now I will carry on this way, and slowly start strengthening my body. Until then, Im going to binge on Netflix :).

Questions and comments are always welcome!

A pendulum between two diseases

Between Ulcerative Colitis and Endometriosis

Where did I leave off?

Oh yes. So I kept you hanging with the MRI results, and still no word from either doctor.

On Monday morning I called to make an appointment with both my GI and my endo specialist. My GI had just returned from holidays and I was kind of expecting to hear back from her about all that had happened while she was away – and the pile of files she must have obtained from the various tests I had done – but instead they booked me in to see her later this week. My endo specialist doesnt have an opening until the end of August!!!

Monday and Tuesday were much like all the other days. Even keel pain, and some flickering of something down below (near my ovaries). The biggest thing though was intense (INTENSE!!!) exhaustion. I could barely stay awake. Monday I woke up at 7:30, did some work, and then fell asleep from 10am to 4pm in the evening. Tuesday, a similar pattern (shhh… dont tell my boss).

Wednesday was starting out to be like the others, but my boyfriend was sadly due to fly back to Ottawa, and mom was flying in shortly after to take over the ‘sicko’ shift. I coaxed myself to get up and do some things in the house; some real work, some chores, etc. Greg walked out the door, I had this shooting pain in my pelvic area, went pee, and… started bleeding. Spotting only, but then my ovaries were on fire. Great! Arent I freed from this burden by taking my Visanne every day? As the hours progressed before mom showed up, the bleeding remained a slow dribble but the intensity of the pain got worse, and with it so did the abdominal pain. This was quite the lose lose situation. Mom showed up finally and we somehow mustered up the strength to gab for hours until I called mercy and had to go to sleep. A restless sleep at that.

A pendulum between two diseases

Thursday morning (today) I prepared for my appointment with the GI. Here is what we concluded:

  • the pancreas and liver, and their associated markers, all look normal
  • my colon is happy as can be; no word of ‘remission’ yet but my CRP, Calprotectin and all other markers indicate that my colon is not inflamed, and that without diarrhea and bleeding the entyvio appears to be working.
  • so this further supports the notion that this could be endo, which is out of my GI’s expertise and hands.
  • Oh, and I still have what they consider early stage ‘possible’ PSC which calls for a colonoscopy and an MRI once a year to check on any emergence of odd cells or inflammation.
  • As a last effort on her behalf I am to take Dexilant for two weeks to address whether this is acid based (ie an ulcer or something related). If the drug works we see if there is time for a scope and if the drug doesnt work it further supports that its not a colon issue and more an endo issue.

 

The one good thing out of this is that I am able to try Neproxin for my pain, which was my saving grace before my excision surgery. The downside to this is the drug is advil-based so it may cause bleeding and diarrhea. So I am to monitor this very carefully and see what happens. Again, I will keep you posted.