What are your endometriosis symptoms like? My symptoms of endometriosis began with painful periods as a teen that made me unable to go to school once a month. After taking Naproxen for years, in my 20’s I developed a large endometrioma on my ovary that gave me immeasurable abdominal pain. It felt like something was exploding inside of my stomach.

What was your journey to diagnosis like? I started to experience severe abdominal pain that was more intense than a period cramp around my cycle. It happened every few months – so I asked my doctor to get me an ultrasound. She did and they found a 13 centimetre endometrioma (cyst) on my left ovary. Within a month, my doctor referred me to a specialist in  who wasn’t quite convinced I had endo. She prescribed Visanne to me but told me to take it only when I began experiencing pain. Fast forward to three months later I was once again experiencing severe abdominal pain. However, this pain was much more intense: I couldn’t walk, talk or breathe. I ended up being taken to the hospital by ambulance where they were convinced it was my appendix despite me knowing and informing them of my cyst. They were even going to perform a surgery: luckily, they didn’t. I was discharged after spending over 48 hours in the hospital with food or water due to the potential of receiving an operation and without ever seeing anyone from gynaecology. My specialist contacted me a couple of days later and informed me she wanted me to get an MRI. After a week, I did, and my results came even quicker. She told me she saw an endometriosis lesion and that she wanted to do excision surgery to remove both the cyst and the endo.

What has your experience with treatment for endometriosis been? The access to care, at first, was excellent for me. My specialist spoke to me right away. Unfortunately, my treatment at the hospital before receiving an official diagnosis was not great. As I stated before, I was told they would have to remove my appendix. I repeatedly asked for anyone from gynaecology. After this incident I did have to start taking the Visanne. Although it does have minor side effects for me, I was disappointed to no longer get my period, in a weird way, as well! Luckily it did wonders for my pain. Am I happy I have to take it forever? No. But I don’t want to ever experience the pain I felt with my cyst. Surgery was successful to remove the endometrioma and preserve the ovary. However, the endometriosis was too severe to be removed as it was superficial and covered my abdomen. This was disappointing. I don’t know how to ask for a second opinion – is it true I can’t remove it? Maybe there is a surgeon who can, the trick is being able to find one.

How does endometriosis affect your day-to-day life? When I had pain, it affected me particularly as a teenager. I missed school a couple of days every month because I couldn’t sit upright and would bleed heavily, causing immense discomfort. My family, my doctor, everyone told me this was normal. I wish I had known it wasn’t. Now, it continues to affect me: I am worried about being able to have children, about explaining my disease to a partner, about explaining it to another doctor or a job. It is tedious and frustrating.

How does endometriosis affect your emotional well-being? My mental health certainly took a turn after my diagnosis. I was nervous about losing my ovary – if endometriosis can cause infertility, being down one ovary wouldn’t make it easier. I was also nervous, and still am, that I may never rid myself of this disease. It’s frustrating and has caused me to lose sleep. My thoughts have kept my up at night. It’s hard.

How has endometriosis shaped turning points in your life up until now and looking toward the future? For now, it has not impacted this. I hope it never does. 

How have you found hope and support in your endometriosis journey? The biggest support was through The Endometriosis Network Canada. Those people have the best advice, give feedback, vent their frustrations. It’s not just learning about the disease: it’s talking about it. I am so grateful that they are there. I also found support with my GP. She pushed for me to receive faster treatment than what I was getting, and I am so grateful to her.

What do you think healthcare for endometriosis in Canada should look like? I think it should be a nationally recognized disease with more funding. If the Canadian government did this – it would help doctors and specialists « promote » the disease and it’s care. I think some doctors, both family and gynaecology, should take courses to recognize symptoms. I think surgeons need to do more intensive training for stage III and stage IV endometriosis removal. Not many surgeons here can remove intense or complicated lesions. I think it also starts with believing your patients. Do not say it’s in our heads. Do not say we’re hysterical, or drug seeking. Take a feminism 101 course and learn about your patients. We need you to help us.

What do you think it is important for people to know about the experience of having endometriosis in Canada? It is long, it is hard, and it is incurable. For some, they may wait 10+ years for treatment. This is unacceptable. It’s not pain that can be fixed with a Tylenol. It impacts our quality of life and our relationships. Please know that we want to get help: we just can’t seem to find it.