What are your endometriosis symptoms like?
Endometriosis is at its best times uncomfortable, like being pregnant during a heatwave. At its worst, it’s as if someone has kicked you in the stomach repeatedly with steel toed boots.
What was your journey to diagnosis like?
I have felt symptoms since I was 15. By the time I was 24 I was missing work and seeing specialists for chronic pain in my neck and shoulder and painful periods, to no avail. When I was 32 it was so bad I could no longer work the job I loved because I couldn’t sit or stand for any length of time. I was finally diagnosed at 38 after blood was appearing in my stool. I have stage 4 and have had part of my colon removed as well as my Fallopian tubes. Now at 41, my symptoms have returned yet again.
What has your experience with treatment for endometriosis been?
Finding access to an endo specialist was extremely difficult. Even after a pelvic CT scan showed my colon and ovary had attached together my Gynecologist was initially rejected. She had to advocate on my behalf and insist I needed to be seen. Once I finally got to see my new team I felt much relief. Finally after my 8hr excision surgery in 2018, I was vindicated.
How does endometriosis affect your day-to-day life?
This disease has completely changed my life. I’m a type A individual who loves to work. I have not been able to work since 2015. Nothing I did helped, other than swimming and yoga. The uncertainty of my day to day pain meant I never knew if I was going to make it in. It has taken me years to accept my limitations and completely let go of the structured existence I knew. I have become more creative and artistic as a result. I taught myself to cook and make jewelry. I have forgiven my body, and take it day by day.
How does endometriosis affect your emotional well-being?
Prior to my diagnosis and surgery I was very depressed and suicidal. I wanted to leave my partner of 15 years because I couldn’t stand being around anyone. I was sleeping 15 hours a day, unable to move and basically bedridden. After my diagnosis I felt this vindication. My family now understood what was happening. I felt the weight lift off me, now I could focus on recovery. I am very happy now, we will be celebrating our 20th anniversary this September.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I was very fortunate that my partner and I had decided we didn’t want children very early in our relationship. I can’t imagine what the women who want babies but can’t go through.
How have you found hope and support in your endometriosis journey?
My mother is my rock, I’ve been able to share my feelings with her at the worst of times. I was even honest when I was having suicidal thoughts. My partner is also amazing, he has a very calm demeanor. My family doctor, who believed me, didn’t push pills on me… and didn’t give up. I have also chatted in support groups online, Instagram specially using hash tags to see I’m not alone in my journey.
What do you think healthcare for endometriosis in Canada should look like?
Since we know symptoms appear in teens and young adults.. it should be mandatory in all health classes for all grade 8 students. I especially believe it should be taught to all students so the boys can be educated. This will make for better partners and sons. I hadn’t even heard the word Endometriosis until I was 24…. and didn’t understand what it was until I was 38. What is wrong with this picture?
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Living with an invisible illness is awful. When you live in pain and everyone tells you that you “look fine” is demoralizing. You are made to feel like it’s all in your head. No one understands, nor do they want to. Women and girls especially need to be believed. We know our bodies, and it is not normal to be in such horrible pain during our periods. If I saw the right specialist at 24, perhaps I would still be able to work. I had to get to such a terrible place just to be heard.