What are your endometriosis symptoms like? Severe cramping, stabbing, agonizing pain in the center lower pelvis, the pain and stabbing/tearing like pain radiates across the abdomen and lower tummy, and down through your uterus/vagina, which also brings a lot of pressure and pain to strike out down and through your vagina, so sitting, standing is unbearable and laying down in a hot bath or on couch or in bed with a heat pad, on top of any and all medication I can take. The pain can cause me to be bedridden from a minimum 1-3 weeks per month/period cycle.
What was your journey to diagnosis like? I have been suffering with endo for over 12 years. It wasn’t until a large cyst had to be removed that the endometriosis was found in 2018.
What has your experience with treatment for endometriosis been? After surgery healed (about 3 months), my pain relief returned right back to the agony that I had prior to the surgery. No relief other then that in 12 years.
How does endometriosis affect your day-to-day life? I don’t have a career, I can’t keep jobs because employers don’t like it when work is missed 1-3 weeks each month. I am self employed by a few family and friends to make bills. I can’t wear anything tight or with a waistband, ever, the slightest pressure hurts and aggravates my lower pelvic pain. I can not leave home without my medications or heat pads or bath stuff for some slight endo relief. I have not had a chance for children yet due to being infertile from the endo and the fertility treatments like IUI and IVF in our province are very costly and not covered in our province, I have only wanted to be one thing in life, and that’s a mom. I haven’t had the proper opportunity yet, and what we have tried has failed. Motherhood was my only goal in life and I don’t think I will ever get it.
How does endometriosis affect your emotional well-being? Doctors and professionals have lead me to believe that I will continue to suffer and have no quality of life due to the constant pain and debilitating disease I have. No proper working pain pills get prescribed to me, and I keep getting told to go to therapy and the pain will go away. I am more mentally healthy then my body now and I am still in pain, I feel crazy and insignificant and a failure as a person by being born with an invisible disease. Some doctors finally believe my distress, but that’s only happened now after surgery. Past relationships were affected with me always being in pain and always being depressive.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Very dark life, not much hope, completely devastated I have a disease no one will help me with and when I do get help, it is so minute and short lived, it doesn’t make a huge impact.
How have you found hope and support in your endometriosis journey? Other then family and friends, no support. GP has tried what she can, and she doesn’t get any help to help me. Only 1 ER doctor in the last 12 years believed me and offered what hell he could cause his sister had endo. Since then, only when I had surgery did professionals help and believe me. In the last current year, only my two paid therapists have believed me, and one ER doctor that actually gave me pain relief when I went into the ER crying and screaming in agonizing pain.
What do you think healthcare for endometriosis in Canada should look like? We need actual voices and ears in the healthcare system that can do and can help sufferers of endo. We need more research and work put into this disease. Endo is debilitating and mind wrecking, and makes a person feel like they are doomed to suffer for no reason until they die.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Endo is real! Bad period cramps are real! Women’s issues are real! Infertility is real and really heart and soul crushing.