What are your endometriosis symptoms like? 

It’s debilitating at times. As a whole body disease I have piercing and surging pains in my chest, diaphragm, abdomen and pelvic floor that refer anywhere the body can feel inflamed. I have terrible headaches, nausea, severe bloating and the fatigue at times is unmanageable. With a constantly inflamed body, my diet has become severely restricted due to food intolerances. It is an incredibly inconvenient disease that is unpredictable with these symptoms hitting at any time, usually overlapping.

What was your journey to diagnosis like? 

I have had symptoms for almost 2 decades before being diagnosed by symptoms and family history (waiting on excision surgery for confirmation, going on 1.5 years now). I saw many gastroenterologists over the years due to digestive pain/inflammation, all who said I was a healthy young person who couldn’t eat some foods. I spent time with a dietitian and was put on a super restrictive elimination diet, which did not bring relief and made it impossible to re-introduce foods, leaving me in the state of having a pro-longed unhealthy diet. I said I thought my issues felt hormonal in nature & had many blood tests coming back positive. I was lucky I only had one Gynecologist who was super condescending and blamed my symptoms on anxiety alone before being heard and having my pain validated by another who referred me to an endo excision surgeon.

What has your experience with treatment for endometriosis been? 

Seeing as I had been on birth control previous to diagnosis, I was put on both Visanne and Orilissa medication to manage symptoms until surgery. My symptoms intensified on these medications and with additional symptoms such as severe hot sweats and unmanageable low mood. I was also put on a micro-dose of tri-cyclic anti-depressants to downregulate my anxious central nervous system in hopes it would support lower gut inflammation, but my digestive system would not tolerate it. I  have accessed pelvic floor physiotherapy twice, but with limited means could not continue treatment, though I have continued with prescribed exercises that do not show noticeable improvement. I am able to access psychotherapy and have been for years, which the physiotherapist suggested would give me the most relief (downregulating my central nervous system) while I wait for surgery. Symptoms continue to worsen and intensify as I wait, causing painful co-pain conditions and I need more healthcare support.

How does endometriosis affect your day-to-day life? 

I cannot be spontaneous and have missed many social gatherings. My illness makes me unreliable at times. As someone who is un-partnered, dating has been difficult due to ablelist mentalities & my inability to predict my symptoms nor timeline of treatment. When I am working full-time I have struggled through the days and been left with little to no energy at the end of the day. Time for recovery is not built-in to our current employment landscape. Endometriosis symptoms and lack of knowledge and support in our healthcare systems has worked to keep me in survival mode. I can only hope that once I receive excision surgery I will experience more freedom in life.

How does endometriosis affect your emotional well-being? 

Anxiety disorders have only intensified with physical pain over the years. Every time I advocate for myself within our healthcare system, I experience heightened anxiety. Having pain dismissed and being gaslit by partners and medical professionals who do not understand this disease makes it an effort to remain hopeful for relief, accommodation and acceptance in life.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

With a string of toxic & unsupportive work environments and heightened anxiety due to navigating this disease in its unpredictability, I find it difficult to trust myself capable of finding suitable work that is sustainable, and of having the mental capacity to further my education, which could help in finding more suitable work. Not knowing when I will receive excision surgery nor how long recovery would take or even how much relief it would bring, makes me fear losing a job during that time, and as someone living solo this is a concern. Basically, I have been living in survival mode for a very long time, so thriving hasn’t often been on the menu.

How have you found hope and support in your endometriosis journey? 

The first time my pain was validated and fully believed by a medical professional & I was given a suspected diagnosis of endometriosis on the spot, without hesitation. While there isn’t a cure, there are now more options for treatment and a possibility of relief. I had previously felt that I would need to experience this pain for the rest of my life. Also, now that I had a name for it, people in my life could begin to understand. I could begin to understand & self-validate. My first time at an Endometriosis support group. I didn’t even have to try and justify or prove how bad and disruptive symptoms can be. They just knew. I’ve had a lot of empathy & support from people in my life, but understanding goes a lot further and now they can & we can share hope for improvement in my health.

What do you think healthcare for endometriosis in Canada should look like? 

A clear and across the board understanding of what this disease is in the medical community for early diagnosis. A transparent database of endo surgeons including their experience, specializations, whether they work with other excision specialists for extra pelvic disease excision, surgical success rate stats, etc. (so we can make informed decisions before waiting years to ask the surgeon these q’s and avoid delaying treatment even further when they are not experienced enough) More incentive for surgeons to specialize in endo excision. We need more surgeons we can trust! No interference from big pharma pushing medications that can be much more harmful than helpful in diagnosis and treatment of this disease. It should be INCLUSIVE. Advocacy and medical institutions/professionals regularly alienate trans-men, intersex and non-binary people living with endo. Most posters show a picture of a white, thin, cisgender woman. There needs to be a much wider representation of what people with endo look like. It’s 2021, we all know better.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

I have to watch people from the U.S. or around the world get proper trusted expert excision surgery quickly once diagnosed. If I had the funds, I would feel confident in my choice of U.S. surgeon b/c they are outspoken, advocating for endo patients and transparent about their expertise. I have not seen one Canadian surgeon added to the icarebetter endo surgical vetting process list & have to wait years to meet a surgeon just to ask q’s about their expertise. It’s not just a bad period. In fact, I’m not someone who even experiences severe menstrual cramps! And this disease STILL heavily affects my life. The fatigue alone can be debilitating & most people with endo experience many symptoms simultaneously.