What are your endometriosis symptoms like? I get pain mid-cycle that radiates across my lower back. My stomach gets bloated and any vigorous activity is very painful. I can’t run or jump during this time. Picking up my children or leaning over hurts. During my period the cramps are worse than labour pains. I have stabbing pains in my cervix. I also struggled to get pregnant with each of my children. I went through several invasive tests, a laparoscopy, and many rounds of medication to get pregnant.
What was your journey to diagnosis like? I was 29 when I thought there might be a problem because I couldn’t get pregnant. I went for fertility tests with an OBGYN and he suspected endometriosis but said there was nothing to be done about it since I wasn’t experiencing significant pain at the time. After my second baby at age 32, the pain increased dramatically and I had an IUD to help control my periods. They stopped for a year but then I developed a large cyst. At age 33, I had a laparoscopy to remove the cyst the doctor found the endometriosis and burned it off. I was diagnosed with Stage 1 endometriosis by the OBGYN who removed my cyst.
What has your experience with treatment for endometriosis been? The pain continues to get worse over time, and it’s been significant for me for the last 4 years. I treat it with Tylenol, Advil, heating pads. It affects my ability to be active and go to work. I have just started a new birth control in the hopes that it helps. So far this cycle has been better than most.
How does endometriosis affect your day-to-day life? On my worst pain days I can’t go to work. This is about once a month. I always hope it falls on a weekend so I don’t have to call in sick. I can’t run or workout several days a month for the pain. I feel like I can’t participate in my family life on the bad days. We’ve cancelled outings that landed on my bad pain days.
How does endometriosis affect your emotional well-being? It’s depressing feeling like pain is there for the rest of your life and no way to improve it. I feel anxious about missing work and not sure how to explain to my male boss that this is serious and I’m not just whining or trying to use my period as an excuse to ditch work.
How has endometriosis shaped turning points in your life up until now and looking toward the future? It took a long time to get pregnant each time. I didn’t get the luxury of choosing the age gaps for my children. I feel a little resentful that my youngest is much younger than her siblings because it took so long. I wanted to have my children younger and I feel like the timing wasn’t ideal with my career and I’m behind now.
How have you found hope and support in your endometriosis journey? There’s a lady at work with endo and it’s been nice to have someone to talk to. There is a subreddit I read with stories and experiences. My sister was also just diagnosed so we have each other.
What do you think healthcare for endometriosis in Canada should look like? More research and exploring options for managing symptoms. It’s not very encouraging to be told that you just have to live with something that impacts so much of your life. There must be something they can do to help. Paid sick days for everyone, no questions asked.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It’s invisible and debilitating.