What are your endometriosis symptoms like? I have chronic pelvic pain, during a flare and/or menstruation I would black out if it were not for the pain. During a flare/my cycle, I experience nausea, vomiting, cold sweats due to extreme pain and debilitating cramping. I am often unable to leave the washroom floor. Heat, breathwork and medication are the only things that help during a flare/cycle. 

What was your journey to diagnosis like? I am a 41 year old woman who was just diagnosed at 38. I had my first cycle at 14 and the pain started immediately. I was told by doctor after doctor that I’d grow out of it, that it wasn’t that bad and who would put me on heavy medication which I preferred not to be on. As a child, you don’t know which questions to ask and as I grew older I began to advocate for myself. I had to push for literally decades to be taken seriously and to be able to see a specialist. I’m hoping that by raising awareness people/parents will be begin to advocate for themselves and doctors will be better equipped/informed on how to educate their patients in a compassionate way.

What was your experience with treatment for endometriosis been? I was initially presented with the options of birth control and later in life hormone therapy. My body is exceptionally sensitive and I wanted to try everything possible to be able to go a more natural route with a blend of allopathic and holistic methods. At the time, there was not a lot of information on the holistic options and so I researched on my own until I found an amazing team that includes a naturopathic doctor (ND), a pelvic floor therapist, a Traditional Chinese Medicine (TCM) practitioner, an autoimmune nutritionist and started Qi Gong. I take supplements instead of medication whenever possible and am able to balance both Western and Eastern medicines. It’s definitely helped but it’s been a long long road.

How does endometriosis affect your day-to-day life? When I am in pain, I am unable to stand let alone go to work, classes, cook, exercise or take care of any responsibilities at home. It impacts every single aspect of my life. I spend most of my days planning for my cycle/flares. I plan vacations so that I am not away from home when my cycle starts as I have had to create a strict regime to follow to minimize pain as much as possible. It is a full time job managing this disease.

How does endometriosis affect your emotional well-being? Following such a strict routine to minimize pain and chronic symptoms – almost passing out when having a bowel movement, fearing fainting if cycle starts, pain so severe I am laid out on the floor leaves me feeling exhausted physically, mentally and emotionally. I experience anxiety on a daily basis and body image issues due to severe bloating, skin issues, etc. It’s a debilitating disease on so many levels.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I suffered such severe pain and depression in university that I ended up leaving school. I was fortunate enough to complete school a little later in life thankfully and work in a very compassionate field with supportive coworkers. It took me nearly two decades to find such a supportive work environment. I was deemed infertile and have had to create a new vision of what my family looks like. I have made peace with this over the years and love my family but it has been a journey.

How have you found hope and support in your endometriosis journey? I was very fortunate to be able to meet some very open minded, aligned practitioners who I call my personal care team. TCM, my ND, pelvic floor therapist who introduced me to Qi Gong, an autoimmune nutritionist and my therapist have been angels. I found them on my own and hope that more options are provided to those early in their journey.

What do you think healthcare for endometriosis in Canada should look like? Advanced training for doctors regarding educating their patient’s on the disease and to be able to provide a variety of resources alongside bedside training in active listening. It’s already come a very far way but the momentum needs to continue. Surgeons and specialists being trained/educated on excision techniques vs ablation and unnecessary hysterectomies. Better benefits coverage for complementary health care options and full or better coverage for therapy of you are experiencing chronic pain/disease. Better workplace policies and standards for chronic pain and disease. Better education and information all around.

What do you think it is important for people to know about the experience of having endometriosis in Canada? While there have been steps towards better education, it needs to continue. Canada has world class Healthcare but we need to do better in terms of supporting those with chronic pain. We need to better educate Healthcare. We need better access across the board but especially for those who are vulnerable. Having endometriosis is challenging – it’s challenging because those of us who have it have learned how to put on a brave face and soldier through pain. To stop asking for help because we’re not always taken seriously. It is an invisible illness with an anything but invisible mark left on our bodies, our minds and our emotions. It is a whole person disease and we need better support.