What are your endometriosis symptoms like? I’m in pain everyday, I have a constant throbbing pain in my lower back. I have throbbing and sharp pains in my abdomen. Sometimes on each side and sometimes all over. It all gets worse during ovulation and then it gets 3 times more painful up to a week before period and continues for a week after my period. I get my period on average every 23 days for 5 days.
What was your journey to diagnosis like? At the age of 14 I was hospitalized for excruciating pain in my right abdomen. I went through lots of tests and a diet change while I was in hospital for 2 weeks. When I was discharged I was told they didn’t know what caused the pain. Nothing more was said. Then at 20 years old I got pregnant and had my child by C-section. It took quite awhile to heal from that. Then at 24 years old I ended up in the hospital again for that same right side pain. They sent me immediately for laparoscopy operation, they thought it was appendicitis or gallstones. It was neither but later that day I was told that since they were inside me they cleaned up the really bad scar tissue I had from my C-section. For years after I was able to cope with the pain and period better than before. I got pregnant again at 26 and had another C-section. I had a very hard recovery from that operation. From then on I have suffered a lot of pain. My back never stops hurting. Now I was finally told of my endometriosis at the age of 40. I told my doctor about my constant pain that did not get better with my healthy lifestyle and that’s when she said that it was probably my endometriosis. I looked at her stunned and I told her I didn’t have endo her response was “of course you do, you’ve had it since you were hospitalized at 14, you had it cleaned out at 24 and no you must be starting to have a build up again.” What way to find out. I cried like crazy and asked why I’d never been given information or pain management. She said she thought I knew. I’m now 42 and I’m still suffering with no help from doctors.
What was your experience with treatment for endometriosis been? Laparoscopy procedure to remove scar tissue.
How does endometriosis affect your day-to-day life? I can’t work, I have constant brain fog and I have to make lists constantly to keep up with life. I have a hard time getting my housework done and tend to get extremely tired by 3pm. Endo rules my life.
How does endometriosis affect your emotional well-being? I have a hard time going to bed, I can’t sleep longer than 6 hours then my pain wakes me. I have major anxiety disorder and sometimes suffer from depression. Luckily my intimate relationship with my husband is solid.
How has endometriosis shaped turning points in your life up until now and looking toward the future? My entire life would been different because I could have pursued a career, but instead I needed to use all my energy just to cope with raising a family and coping with endo.
How have you found hope and support in your endometriosis journey? I have never had support nor was I ever offered any. The only support has been my family and dealing with it.
What do you think healthcare for endometriosis in Canada should look like? It’s deplorable and I hate them for making me suffer.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Doctors need to be educated! Patients need to be made aware and the public as a whole need to know. The government needs to see this as a lifetime disability.