What are your endometriosis symptoms like?
Like having two meat hooks in my hips that are being pulled apart, I imagine it as an invisible Saw movie trap. It’s paralyzingly awful.
What was your journey to diagnosis like?
It took 7 years from the first time I complained of being in abnormal pain compared to my peers. I insisted on laparoscopy because not knowing why I was in pain felt worse, emotionally, than the pain. I was lucky to get diagnosed when I asked, if I had known about endometriosis sooner then I could have started to manage it sooner. About 6 doctors total for one to say “endometriosis.”
What has your experience with treatment for endometriosis been?
Cutting gluten from my diet has been amazing for me. It’s just a little less inflammation but it helps a lot. Ablation surgery gave some relief for about 6 months. A TENS machine isn’t too bad either. Mostly, prescription painkillers, heat, and CBD oil is the best. I’m not into taking hormonal birth control because of side effects.
How does endometriosis affect your day-to-day life?
My mental health has taken the biggest hit from endometriosis- it feels like pain with no gain- I didn’t do anything to deserve this kind of physical pain. I’ve always wanted a baby and endometriosis feels like some nasty shadow over my life now. Missing classes and work feels so shameful because people cannot understand a pain they’ve never felt.
How does endometriosis affect your emotional well-being?
I think endometriosis has a big part to play in my mental illness, it is unfair that I got stuck with it. It’s incurable. It can make the future looks really grim knowing endometriosis is coming with you, no matter what you do.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I think it’s been a part of the breakdown of some relationships- just because people can’t fathom it as an experience.
How have you found hope and support in your endometriosis journey?
Being diagnosed was a big milestone for me. It’s a like a key to unlocking a community of support, advice, and resources that just aren’t there for primary dysmenorrhea. I’m grateful for where I’m at with it.
What do you think healthcare for endometriosis in Canada should look like?
More experts, this disease is so common and yet the understanding of the basic microbiology/cellular structures of it is misunderstood. Access to endometriosis specific healthcare and treatments for a CURE. Birth control is NOT A CURE and can be very bad for you. Stop dismissing teenagers. Find a way to diagnose without surgery.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It’s a whole body disease. It affects my eating, my sleep, my productivity, my sitting position, everything.