What are your endometriosis symptoms like? I have debilitating cramps that often go around to my back and down my legs so bad sometimes I vomit. My pelvic floor feels like I’m being stabbed with hot pokers. I experience painful bloating.
What was your journey to diagnosis like? It took around five years to be diagnosed. Before my diagnosis I had doctors tell me there was no medical reason for my pain and told me to seek counseling. I’ve had nurses roll their eyes and tell my husband I’m not in as much pain as I’m complaining about.
What was your experience with treatment for endometriosis been? I have a Mirena coil in place for hormonal treatment and use medical cannabis oil to help me sleep and medical cannabis flower to help with the pain.
How does endometriosis affect your day-to-day life? I am on a permanent disability not only because I can’t predict when I won’t be well but also because of the chronic fatigue that goes along with it. Being unwell means being in bed. I have scars on my stomach from burning myself with a hot water bottle because I use it so frequently. If I plan to be out for any length of time or further from home, I have to bring pain meds and often have to cancel plans or leave early.
How does endometriosis affect your emotional well-being? There’s a deep sense of weariness that never seems to let up, even for a minute. I honestly can’t remember not being in pain and feeling the bone aching, mind numbing, exhaustion.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I was diagnosed at a time in my career when I was being promoted but had to go on short term disability instead. I went back to school because I knew I’d never be able to do that kind of job again but have since had to go on permanent disability.
How have you found hope and support in your endometriosis journey? My husband is the most supportive ever. He has been there for me through all of the ER visits. He’s wiped my tears, refilled my hot water bottle, rubbed my back and taken care of everything when I couldn’t. Most of all, he believed me when nobody else did. I joined a group online and it helps to read their stories and know that someone else understands.
What do you think healthcare for endometriosis in Canada should look like? Medical professionals need a lot more training on the disease and it’s symptoms. They also need to learn that just because it’s not visible on a scan, doesn’t mean it’s not really there. It should also involve therapy because it’s not curable and it affects every aspect of life.
What do you think it is important for people to know about the experience of having endometriosis in Canada? The pain can be debilitating. Every day is exhausting. I always plan rest days before and after a “busy day” like grocery shopping. It can be humiliating. I have many times had blood leak through my clothing. It’s isolating. Being in bed all the time can get very lonely. Even when you’re around others, you’re alone in your pain.