What are your endometriosis symptoms like? Exhaustion, lower back pain, pelvic pain, night sweats, heavy periods, extremely painful periods, low iron, occasional bladder irritation, painful bowel movements.
What was your journey to diagnosis like? It took years of going to the doctor off and on to finally get a diagnosis but it was diagnosed by accident. I had lower back pain for years and was told it was mechanical so to go to physio. I went to different physiotherapists and nothing worked. My other symptoms were always chalked up to anxiety and hormone related problems that come with age (I’m 43 now). I had an ultrasound done for something totally unrelated and they found a 10 cm ovarian cyst. I was then sent for an MRI and they still didn’t know if the cyst was an endometrioma or something else but it had to come out. Because I had no problems having kids (and I have 3), the OB said it likely was not endometriosis. I went in for surgery and sure enough it was stage 4 endometriosis. Because they didn’t think it was that going into surgery, they did not have specialists in there to completely remove all of the endometrioma because it was stuck to my bladder so they burned it down. The cyst is still there but only 1.5 cm. The OB put me in Visanne but I had terrible side effects so I am now on Alesse so that I don’t get a period. They didn’t get all of it so I still have symptoms that have come back and now I’m super frustrated again. The answer seems to be pain meds and birth control to control symptoms. I could have a second surgery but if they don’t get it all again then I’ll just be back where I am again.
What was your experience with treatment for endometriosis been? I had surgery to remove the endometrioma but they couldn’t completely remove all of it. My symptoms went away from about a year then they started coming back and I have a small endometrioma again. Now I’m on birth control because that seems to be the only option.
How does endometriosis affect your day-to-day life? I’m always tired and have lower back a lot of the time. If I without the lower back and pelvic pain gets worse. This impacts what I can do with my kids. I also have a lot of muscle pain and get headaches often.
How does endometriosis affect your emotional well-being? I had anxiety for years because the doctor kept dismissing my symptoms so I thought I was crazy after awhile.
How has endometriosis shaped turning points in your life up until now and looking toward the future? It’s nice to finally know what all these symptoms are from but being able to talk to others who have had similar experiences or have tried things that improve symptoms would be very helpful.
What do you think healthcare for endometriosis in Canada should look like? I think there needs to be more support and help available. I feel like, since it’s not life threatening and seen as a female issue it is shoved to the side and your symptoms don’t matter and you have to beg for help.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It affects your quality of life. It’s constant and the only thing that changes is how bad the flare ups or symptoms are for the particular day. No day is symptom free.