What are your endometriosis symptoms like? Daily debilitating pain, nausea, extreme fatigue, painful bowel movements, feels like knives stabbing up my rectum at times, shortness of breath and chest pain, leg weakness, nerve pain shooting down my legs, sciatic pain, incredibly heavy periods, pelvic pain and pressure that feels as though I am giving birth.

What was your journey to diagnosis like? I had my first period when I was 13, I remember I was playing elite hockey at the time. I was bleeding so heavily I couldn’t leave the washroom. I spend months going back and forth to my family doctor for help. Years later, at the age of 17, I was finally referred to a gynaecologist that dealt with endo. I was started on a Mirena IUD which made my pain worse. I had my first exploratory laparoscopic surgery at 19 and had confirmed endo. Although my specialist at the time insisted it was not the cause of my pain. I continued to live with daily debilitating pain. I had Lupron pushed on me at this point and after refusing it for years, my specialist finally told me one day there was nothing she could do to help and find another doctor and she stormed out of the room. I had an aunt that was on Lupron and I was very close to her, I remember how crippled she became because of this horrible drug. She always told me that she wouldn’t recommend it to her worst enemy. Over the next 5 years I was sent to every gynaecologist in the city I lived in. I tried every form of birth control, every pill possible, and was told that because I would not take Lupron that there was nothing more anyone could do. I looked elsewhere and found a specialist. I had a teleconference appointment and 8 weeks later I was flying to Ontario on a cancelation for surgery. I was then seen at the Ontario hospital and was told that after surgery I would be required to take Lupron as it was my last option. Surgery went well, endo was removed as well as my appendix as it was very inflamed according to my surgeon. I flew home the next day. I followed up with my family doctor, 3 months passed and I was pain free for those 3 short months. Then the pain came back as bad as ever. I was constantly calling in sick to work. I had a child that I struggled to spend quality time with as I was always in pain. At this point I gave up. I tried Lupron, and let me tell you. That is one miserable year of my life I can never get back. The side effects of the drug were more debilitating than my endo at that point. My days were spent in bed. I didn’t eat, if I did it came right back up. I struggled to do anything. Going to the bathroom was the biggest accomplishment of my day. My fatigue was worse 10 fold. My pain was still there, every bit of it. I still had heavy periods and breakthrough bleeding. I was hospitalized for migraines. It hurt to walk, my body felt like it was going to fall apart, every part of me now hurt. All I wanted to do was cry, I knew better than to take this horrific medication and yet I was bullied into it being told there was no other options. The chills, hot flashes, insane memory loss, being unable to write or have a conversation as my brain just didn’t process things. I had to go on disability, I could barely care for myself let alone my child. I ended up moving in with my mother. After a year of being off Lupron, most of the side effects slowly wore off, I was able to go back to work and got some of my quality of life back. It’s been 7 years since I was on Lupron and still have long term effects. The worst being memory loss and trying to find words when having a conversation. 5 years ago I quit taking any form of birth control cold turkey. My body was in shock. The pain still unimaginable, but my periods got back on a schedule. No more break through bleeding. The hot flashes are gone, the fatigue subsided some. I spent the first year taking medicinal Marijuana which helped tremendously. I weaned myself off all forms of pain meds for 4 years. Since about the summer of 2019 my pain has come back, only now I have more symptoms of thoracic and sciatic endo. I also have severe pelvic pressure that feels like I am birthing a child. I can’t stand long as it gets worse. If I sit too long it feels as though my ovaries are going to explode, I struggle with shortness of breath, chest pain, nerve pain in my legs amongst other symptoms. I have been waiting for 18 months to see a pain management specialist although I feel it is not necessary. I’ve lived in pain 17 years and although it slows me down and changes a lot of daily activities I’ve learnt to live with it. My doctor informed me I must take this step of pain management before being referred to another surgeon. It’s exhausting waiting on our medical system in Canada, it seems that’s all we do is wait. If the cost of surgery out of country wasn’t so insane or our government would do more to help I know for a fact more people would take that route. Endo is causing almost 2 billion dollars a year in Canada, I’m sure a huge portion of this is emergency visits. It should be put towards out of country surgeries to get people help faster. I know I have spent more time in emergency rooms than I can keep track of, again because the wait for surgery is so incredibly long and doctors still have the lack of knowledge telling people like myself endo is rare it can’t be the cause of our pain. 

What has your experience with treatment for endometriosis been? Treatment is almost non existent. There is still such an incredible lack of knowledge in the medical community when it comes to endo and a diagnosis. I’ve been diagnosed with endo and yet I’m still told my doctors that it’s just part of being a woman. It’s sad. From experience I can say the only treatment that has given me any relief if excision surgery. 

How does endometriosis affect your day-to-day life? It affects all aspects of one’s daily life. I’m lucky enough to be a stay at home mom and I still plan around my quality of sleep, stress level and pain on a daily basis.

How does endometriosis affect your emotional well-being? Emotionally the hardest part is doctors not believing your pain Is real. My sleep is interrupted often by pain, I struggle with periods of insomnia. I’m sure it has a huge strain on new relationships. 

How has endometriosis shaped turning points in your life up until now and looking toward the future? I’m lucky enough to have 1 child. I’m also lucky enough to be a stay at home mother. My husband understands the struggle for me to work and my overall health has improved not having to work a full time job. I started taking nursing before I met my husband. Since taking Lupron I struggle with memory retention. 

What do you think healthcare for endometriosis in Canada should look like? We need more updated knowledge about endo in Canada. Too many doctors still have the mentality that endo is rare. Endo can’t possibly cause that much pain. It’s part of being a woman. There is no medication that can cure endo, and that a hysterectomy is a cure. 

What do you think it is important for people to know about the experience of having endometriosis in Canada? They need to know how real it is. And the impact it can have over a person’s entire body. Not just the pelvic organs.