What are your endometriosis symptoms like?
I had excruciating pain the first 2-3 days of my period. I got my period when I was 11 and the pain started about a year later. I had pain in the middle of my cycle also. I would turn pale and throw up. My mother gave me what ever pain meds ( including codeine and Valium ) that she had. I would be knocked out for a day and a half. I missed at least 2-3 days a month of school. The doctor said I was nervous. Later my stomach started to swell and looked like I was pregnant.
What was your journey to diagnosis like?
When I was 19 yrs old I started to hemorrhage. It wasn’t my period so I went to the doctor and he told me to go home and put my feet up. The bleeding got worse and I went to the emergency room. I had little blood left in me. They opened me up and discovered an ectopic pregnancy. The tube was scarred from endometriosis and ruptured. I had almost died. The diagnosis of endometriosis was shocking and strange. No one knew what caused it or how to treat it. The doctors said I would have a hard time conceiving and should have a baby sooner than later. I was given iron supplements. This was in the late 70’s.
What has your experience with treatment for endometriosis been?
The only treatment that I was given was the suggestion that birth control pills would slow the growth of the lesions. I was not treated for Endo until I ended up in an emergency room again with horrific pain. They performed an appendectomy on my healthy appendix when it was really an Endometrial cyst that ruptured. They said they cleared as many lesions that they could and sewed me back up. No treatment was given.
How does endometriosis affect your day-to-day life?
Besides the missed school days, it was also difficult to stand or walk for long periods of time. Sex hurt in the middle of my cycle.
How does endometriosis affect your emotional well-being?
I also had a miscarriage in between operations for endometriosis. The thought of being infertile upset me. The clock was ticking and I felt cheated by this disease.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I did get pregnant in my early 30’s. My son was born 2 months premature. When he was about a year and a half I started having horrible pain again. I had another cyst and needed another surgery. They opened me up and closed me back up and said it was the worst case of Endometriosis they had ever seen and said I needed a hysterectomy. I needed help to look after my son because of these operations and pain. Luckily I had a supportive husband. In my mid 30’s I had a bilateral oophorectomy. No ovaries , tubes or uterus. All gone. Goodbye lifelong pain! Now to replace the lost hormones is another journey. You need to replace the Estrogen in your body. I found a hormone specialist but it took years and is very costly. These hormones should be covered. I was lucky to have had a child but I don’t miss my lady parts that caused me so much pain and almost death.
How have you found hope and support in your endometriosis journey?
I never felt supported by the health system in this battle. It was always “ wait till you can’t walk to seek treatment “
What do you think healthcare for endometriosis in Canada should look like?
Women with pain should be able to get laparoscopic surgeries to see what’s going on until things burst or hemorrhage. Hormone counseling should also be available.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
I think people need to be educated about the pain someone with endometriosis is having. I use to turn white, throw up and double in pain. I also think people who are having trouble conceiving should be able to find out why.