What are your endometriosis symptoms like? For me, having a period is 4 days of laying in bed in a ball with a heating pad and popping anti-inflammatories like candies. I am unable to work during this time as the pain is so intense that it feels like I’m going to pass out. The pain feels like like a stabbing or sometimes it feels like my organs are having a tug-o-war, is a pulling.
What was your journey to diagnosis like? I was diagnosed at a pretty early age, my period started when I was 9 years old and they didn’t stop, ever. After a few years my mother brought me to see a gyno because i would bleed for a year straight nonstop. At the age of 13 the gynaecologist did a laparoscopic surgery on me and diagnosed me with PCOS and endometriosis. He tried putting me on birth control and different hormone therapy but my mental health was suffering so I ceased all therapy and tried to just « live with it ».
What was your experience with treatment for endometriosis been? Last year I was in so much pain that I ended up in the ER. The triage nurse had no idea what endometriosis was, she had to look it up on the internet right there in front of me. 1 in 10 women has this, how could she not know about this? The ER doctor at least knew what I had but he was only able to give anti-inflammatory medication and referred me to a gynaecologist. I felt very discouraged of ever having any help since the gynaecologist is not an expert on endometriosis, I don’t believe we have any experts on endo in the Maritimes and if so, please give me a name. I’ve since been seeing a naturopath who has had success in treating endo and he has diminished my pain and suffering, but not enough to have a normal life during menstruation.
How does endometriosis affect your day-to-day life? My quality of life is not great. I lack motivation most days. I have developed anxiety, suffer from depression and spend too much time alone. I distance myself from family and friends due to not feeling well. I worry that my employer will let me go for missing so many days a month or I may not get a promotion due to my attendance. I am not able to provide a doctor’s note due to the fact that one does not exist for my condition. So while I’m laying in bed, in pain, I have to drag myself to the clinic and get a doctor’s note for my attendance each day that I am not able to work.
How does endometriosis affect your emotional well-being? I suffer from anxiety and depression. I sometimes feel like giving up, like I can’t go through it again, month after month. It takes so much energy and willingness out of me to go through the pain. Why me? Why is my body working so hard to put me through this? What is the point if my condition makes it so I can’t have children? I’ve been at the point where the only thing to get me through the pain was to be thankful for it. Imagine having contraction level pain every month but not being able to have children, what a cruel twist of faith. I haven’t had a romantic relationship since 2002 due to the fact that intercourse is painful and my mood swings would undoubtedly be unbearable for anyone to take, I can barely stand myself sometimes.
What do you think healthcare for endometriosis in Canada should look like? I think endo should be considered a medical disability. I think doctors and nurses should at least be educated that this even exists, that would be a good start. I’ve had more hope in seeing a naturopathic doctor than anyone else I’ve seen in the heathcare system, it’s almost like it’s not taken seriously, like it’s all in my head.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It’s not all in my head. The pain and suffering that comes with this awful disease is very real and debilitating to me and many other women. My life would be very different had I been able to have proper therapies when I was diagnosed as a child, maybe I could have had a family, been successful at work.