What are your endometriosis symptoms like? I could barely breathe, and going upstairs become a very difficult task as I could feel my body trying to increase the circulation just to compensate for the elephant sitting on my chest. But during those days when I was also menstruating I was exhausted, completely unable to move, and had daggers in my uterus! All while trying to live a normal life.

What was your journey to diagnosis like? My painful and heavy periods began at the age of 14. My cycles were all over the place and I would bleed through pads in 20min. About a year or two in, I lost so much blood I fainted. By the time I came to, I was shivering from the pain, groggy and unable to move. I was taken to emerg where they did not know what was wrong with me so they put me on birth control – at the mere age of 15! But that was the first time I ever heard the word endometriosis being uttered. I continued to live with utterly painful dreadful periods, going from birth control to birth control, until I was married at the age of 27 and we decided to try to have a baby. Failed month after failed month I finally went to my doctor to get an exam, to which he told me he could eventually send me to a fertility doctor but only after more than a year of failed pregnancies. Seemed like a failed system to me, to say the least. Eventually I saw a fertility doctor who informally diagnosed me and then officially diagnosed me with stage 3 endometriosis. He ablated the disease which gave me three months of relatively normal periods until it all started to grow back again. I waited 15 years for this moment and all it gave me was three months. 5 years later in 2018 I was seen by a new doctor and she confirmed the disease has spread to my diaphragm. The disease was removed very well through excision but the adhesions that formed resulted in yet another surgery this year in October 2020 that successful removed my bowel and overt from the abdominal wall. We suspect the pain on my left thoracic cavity and the difficulty breathing were a result of this unnatural pulling.

What was your experience with treatment for endometriosis been? I was on birth control at the age of 15 but the formulations back then made me gain 40lbs in water weight. As a young, unsure woman, I was determined to quit the pill and lose the weight. But my body was so confused at that time that I fell into a viscous cycle of anorexia and needed to get back on the right track. I went back on the pill for 12 more years with no real difficulties. Just before my second surgery I was put on Visanne – a progestin only pill – but my body bloated quite badly. I went off of it as soon as my surgery was done, and went on a basic pill again. About a year later we discovered that with my colitis, the oral pills perhaps weren’t being broken down like they should in the gut so I had a Mirena IUD inserted. I was told it would be my life saver. But I bled a lot of tissue and blood for the first few months. I really suffered through it to be honest and then had it removed as we suspected it had lodged into my right side of the uterus. Overlapped with the IUD, I was prescribed Orilissa. Other than the first week or two of nausea and headaches I wasn’t overly turned off by the medication. But as I approached week 13 I fell into a dark place. Based on the mechanism of this medication it altered my brain is such a way that I had suicidal thoughts. Dark thoughts that I wouldn’t act on but scared me. I was instructed to stop immediately and that this side effect was not uncommon (but also not warned). Since then I have just gone back to the basic pill. About a year after my second surgery I also went on gabapentin for what we thought could be central sensitization pain. For no real reason at all, after this last surgery, we decided to switch me over to amitriptyline which appears to be working quite well.

How does endometriosis affect your day-to-day life? Since I can remember I have always been bed ridden the first day of my period. It is painful, excruciating really. The flow is heavy, I tend to bleed clots. I feel sensitive to touch, I’m sweaty and emotional. I’m just super low during that day. It eases up as I approach day 5 but it’s still not a walk in the park. Now having 3 surgeries my body is still not sure how to function. I’m not having normal bowel movements, dairy and gluten swell me up, and while my brain is active my body is 3 steps behind.

How does endometriosis affect your emotional well-being? PMS is not something to joke about. I am out of sorts, irritable, hungry and achy at the same time. I want to be alone mostly because anything will set me off. It’s like depression but you’re cognizant of it. Then the dark thoughts from Orilissa was really scary. I could imagine doing things to myself that you’d only see in movies. I love my life and yet I could very clearly plan our suicide in my head. And then I would cry myself to sleep worrying what was happening to me.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I was moving on up in my career. By 2017 I had landed a very senior role as the director of sales for a biotech company. But that year the endo pain took my life away from me. I was throwing up in the middle of business meetings. I was entertaining through gritted teeth, clenching my abdomen through dinner. I eventually had to take a job that allowed me to work from home. A much less senior role, but it gave me the flexibility I needed at the time. It also put the development of Femade on hold; a pain center for women with chronic pain. Only now after healing from surgery am I physically and mentally ready to take on more.

How have you found hope and support in your endometriosis journey? When I created crampmystyleblog I began having a presence on social media that allowed me to meet some of the most wonderful people in the world. But I am blessed to have a family and a husband who unconditionally support me, believe me, and listen to me. My husband feels the first signs of my not being well, and comes home with a cupcake and flowers. I am truly blessed.

What do you think healthcare for endometriosis in Canada should look like? No doubt in my mind we need multidisciplinary centers of excellence across Canada. We need cross-provincial referrals. We need faster access to excision specialists and surgery. We also need to see allopathic practitioners working in parallel with alternative therapies that have proven results such as pelvic floor therapies.

What do you think it is important for people to know about the experience of having endometriosis in Canada? It goes beyond painful periods. It acts like an autoimmune disease, opening up susceptibilities to other Comorbid diseases such as IBS and IC. It is every day. It is all day. It is emotional, and unfathomable.