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!

What does my child have to do with this?

Why so many of us dont want to talk about Endometriosis

I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry, the trade off is to make more of you feel less alone.

When I finally reached out on social media I found that nobody – with the exception of a few powerful endosisters who have found their way – were not keen on commenting on posts or making themselves obvious sufferers of the disease. This corroborates the sentiment of several endometriosis R&D companies who say they feel lack of support from endometriosis patients as we dont stand up and fight for the cause. Instead, we as patients evidently become quite defensive about new drugs and gimmicky solutions that ‘may’ help our pain or furthermore, ‘cure’ our endometriosis. But it cant be because of periods. For Christ Sake the IBD community is VERY vocal and you cant get us to shut up about poop talk. What sets us apart?

When I was 14 I was loosely diagnosed with a disease called endometriosis – a disease which would cause ‘heavy and painful periods’. I was an anomaly as I later found out, because here are the lame stats that go along with the disease:

The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That’s an estimated 176 million women worldwide. – Danielle d’Entremont, CBC radio interview 

No other disease that I know of comes with a statistic of failure to diagnose, unheard cries for help, and years of life altering pain; permanent damage to the body and the ego. While I continued the journey of “heavy and painful periods” from my teens into my 20s, I came to realize why women dont like to speak out about this disease, despite the 1 in 10. In order to explain, I will use my own story.

I was 27 years old, married, with a house and two dogs – a good life. My husband at the time was a chef, and I was home alone most of the time. What I wanted more in life, unknowing of its challenges, was a baby. I wanted to be pregnant, I wanted to raise this child and I wanted what every woman was supposed to want – a family. We tried, and tried, … and tried. Looking back I should have bought pregnancy tests in bulk. Failed month after month made me skeptical of why this could be happening. We werent old, we didnt do drugs, we werent sick. I spoke with my family doctor who told me that it could be a number of things preventing me from getting pregnant but that the only way I could get proper care was to have 2 years of failed pregnancy as a trigger to refer me to a fertility doctor. I did what any woman would do – I lied. While it had only been shy of a year since we had started trying to get pregnant I told the doctor it had been well over two years. That was that, papers were signed and I waited to see the specialist. The first appointment with the fertility doctor was on my own (as most things were back then but thats a whole other story). We looked at blood work, habits, body weight, etc. The second visit was with my husband, then a follow up to let him know his swimmers were in good condition. He was off the hook. Which meant more focus on me. An internal untrasound revealed that I had very low egg count, and one blocked Fallopian tube. If any of you haven’t had the ‘champagne’ before, its a procure where they stick a needle along the inside of your Fallopian tube and push through it a bubbly fluid that should leak through the other end if the tube is functioning. Mine… was blocked. How do they unblock it you ask? They push the fluid through at a higher rate and hope it dislodges whatever the f%&k is blocking it. I cried like a child! Despite this quick fix, months went by without getting pregnant and the doctor finally pulled the trigger on doing a laporascopic surgery to determine and remove the endometriosis. In this case they book the OR for 1 full hour so that if any endometrial tissue is there, they remove it at the same time since they are already inside me. When I woke up from surgery the doctor told me I had stage 2 endometriosis and that he removed tissue from my ovaries but he didnt feel comfortable removing the tissue from my bladder. Note, the surgery was an excision surgery, not an ablation which didnt exist at the time.

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In the months leading up to the surgery, I will admit to the public for the first time ever, I had left my husband and knew I wasnt trying to get pregnant anymore but decided to go ahead with the surgery in silence in hopes it would give me a few years of pain-free life. During my consult with the surgeon I asked him what was to follow. He said the surgery would give me a 3 month window to get pregnant and then it would all start growing back again. I delicately asked if he would continue to care for me even if I gave up on trying to conceive, and his answer was,… No. In his practice, the only concern was conception; not endometriosis management. I went along in silence for 5 more years, with steady pain, hoping that was the last of my endo, until I couldnt anymore. The endo came back last Summer with full force and I cried with mercy to thousands of women who would listen to my story online. I needed to find an answer to a fairly aggressive endometriosis growth rate (bladder, colon, ribs and diaphragm) from those who had been through the snakes and ladders of various drugs and surgeries.

Over the last year I have shared my story and I have met some of the most wonderful women who suffer (and have suffered) in silence either 1) over their infertility or 2) their struggle to get a diagnosis because they have no desire to get pregnant. In both cases, women feel ashamed of their bodies, their lives, their inability to DO or WANT the one thing we as women are supposed to do – bear children. On one hand we fear the shame of telling our families and friends that our bodies are too sick to bear children. On the other hand, we feel scared and threatened that we will be judged for not wanting to provide a life to this world. In both cases, we lose. And when there is a loss, it is too hard to talk about it. This is why, we women with endometriosis (PCOS, adenomyosis and several other women-only diseases) suffer together – in silence.

There is no treatment, there is no cure, there is no screening method and there are very few specialists who know how to treat us. My goal, as a writer and an endowarrior, is to help bring awareness to the disease so that women who have daily pain and anguish can soon be recognised as strong, courageous, and fearless.