What are your endometriosis symptoms like? Constant fatigue and chronic everyday pain. Societal pressure to suck it up and not talk about /complain. Pain so sharp you can barely breathe.
What was your journey to diagnosis like? Since I first got my period they were heavy and long and painful. As I grew up, I experienced several ovarian cysts. 10 years ago, as my chronic pelvic pain persisted, I was told that I was being dramatic, that my pain wasn’t real. After countless doctor visits, bloodwork, ultrasounds, colonoscopy and emergency room visits I finally found a doctor who thought they knew what my condition really was. Endometriosis. Over the next year I tried strong hormones and almost every painkiller, muscle relaxants and antidepressants they pushed at me. After the pain became too much to push through a day, once I was no longer able to work or even function some days I was able to have excision surgery. Recovery was tough. 8 weeks. I had urinary retention, bladder and bowel irritation, extreme stomach swelling and distension. Despite having visible scars on my ovaries, I was able to get pregnant. It ended in miscarriage and like so many with endometriosis, I was told I might never conceive. Fast forward 3 years and I have a toddler, but also severe symptoms returning. I’m experiencing pain like never before. It brings me to my knees. My stomach can swell from a small bump to looking like I’m 9 months along in mere hours. I’m nauseous every minute of the day. I can’t even remember the last time I wasn’t woken up in the middle of the night with pain. Once again, my endometriosis is taking over my life. My most recent ultrasound has shown that my left ovary has fused with my abdominal wall. My cervix is crumpled into itself, parts of my bowel have attached to my uterus. Add in COVID and I’m told it could be 8-12 months before I’m even able to see a specialist, before I’m even able to be considered for surgery. I’m 37 and for the last 15 years I’ve felt like a burden to my friends, family and employer.
What was your experience with treatment for endometriosis been? The sheer lack of knowledge for a disease that affects sooooo many of the population is unbelievable. Once we are finally taken seriously, and we’re lucky enough to find someone who’s able to help, we’re given expensive, barely researched medication. The hormones are no joke. I’ve woken up soaked in night sweats, my mood can be a dollar later, I’ve started losing some hair, I’ve gained weight. As a former clinical research coordinator, the first thing I do following a doctor’s visit is to check the literature. There’s barely anything. Even fewer randomized clinical trials, peer-reviewed articles, anything really
How does endometriosis affect your day-to-day life? I’m tired. I’m so so tired. I have no social life. I’m constantly having to cancel activities. I feel the need to lie/hide my condition from those who don’t know me well. Exercise makes me dizzy and weak. The hormones make me overeat and slows my metabolism. I take time off work. This disease has taken my life hostage.
How does endometriosis affect your emotional well-being? I’m always tired. I’ve had countless doctors simply tell me that I’m stressed and overreacting. Currently, practicing physicians continue to tell me that if I just get pregnant I will be cured. The chronic pain and fatigue combined with a lack of support from medical professionals worsened my anxiety and I’ve gone through severely depressed periods. Sex is painful. I’m constantly nauseous and tired. I have no drive.
What do you think healthcare for endometriosis in Canada should look like? Systemic change is needed. Endometriosis needs to be given more attention in medical school and nursing. We need to fight for our voices to be heard. Clinical trials are needed. Research is needed. Card and treatment options need to be more readily available. Diagnostic tools need to be developed. Above all, we have to speak out and stop avoiding talk of gross female problems. Of course, as per most areas of health care, specialists are needed and wait times desperately need to be shortened.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It exists. It’s a huge medical issue which a huge portion of the population suffers from. It’s real and it’s exhausting.