What are your endometriosis symptoms like? Spontaneous bleeding, fatigue, debilitating pelvic pain that often turn into pain radiating down my back and legs, nausea. 

What was your journey to diagnosis like? I am not currently diagnosed, but I have been given a provisional diagnosis. Many doctors brushed off my pain, and I was referred to a gynaecologist. The gynaecologist has prescribed endometriosis medication that costs about $70 a month, but refuses to do testing until I struggle with infertility. I am only 23 and I have no intentions of having children. It’s not right that I have to have kids to receive a proper diagnosis.

What was your experience with treatment for endometriosis been? My medication for endometriosis is not working, it has increased my bleeding, and I often have 2-3 periods of bleeding a month. I have been on this medication for 4 months now, but my doctor says I have to try it for longer until they will switch me. No medications for pain have worked in managing my symptoms.

How does endometriosis affect your day-to-day life? I can’t work full-time, and I spend lots of time in bed with pain flares that cannot be controlled by pain medication. I used to run 6k a day, but I cannot run anymore due to my pain increasing during intense exercise. Last time I tried to go for a run, I was in so much pain halfway through that I was unable to move and almost needed to call emergency services.

How does endometriosis affect your emotional well-being? I had mental health problems before, but my depression and anxiety have increased through struggling with pain. I have anxiety about taking a medication for endometriosis when I have not gotten proper testing, and I often feel depressed because there is nothing that seems to work to give me my life back.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I am 23 and would like to go back to school and get a university degree, I keep postponing this due to my health. It has been 10 years since I first had symptoms and I still have not made progress, meanwhile my life is on hold.

How have you found hope and support in your endometriosis journey? I am in a Facebook group for folks struggling with a diagnosis or symptoms of endometriosis. It is helpful to hear from other people going through it, especially when we are unable to get proper information from healthcare providers.

What do you think healthcare for endometriosis in Canada should look like? Access to proper testing and information. The best way to diagnosis endometriosis is through laparoscopy and the wait list for the treatment is 2+ years, and that’s if you get a referral, most folks suffering from endometriosis are refused testing. There needs to be more investment made into making sure testing is accessible.

What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis is not just painful periods, it is chronic pain that can be debilitating, and other intense symptoms. It is way more serious than the way it is described.