What are your endometriosis symptoms like?
Waking up in the middle of the night as a teenager doubled over in pain, crying with your best friend of a heating pad. Would happen month after month. Until I was able to learn preventative measures without having to take strong medication all the time.
What was your journey to diagnosis like?
I got my period at age 9 and I was just diagnosed in 2020. It took about 20 years to be diagnosed. I had every gyno tell me nothing was wrong and would prescribe me higher doses of Advil. None would listen to me and I was gaslight my whole life – not many people knew about endometriosis so I thought what I was experiencing was normal. Until my mom went for surgery and her surgeon told me about her endometriosis that made me start my quest again for my health and answers.
What has your experience with treatment for endometriosis been?
Concerns with treatment is that there is no cure, not enough technology and education out there for doctors to diagnose endometriosis at earlier stages and prevent the disease getting to stage 4. Surgical wait times are long in Ontario and specialists seem like they don’t want to do surgery to excise the disease.
How does endometriosis affect your day-to-day life?
Being gaslit your whole life has a huge impact on your life, days missed at work, time away from friends, time not being spent in the present because your in so much pain. Planning your whole life and vacation around your period is devastating and debilitating. Also the pain that comes with endo like GI issues take a huge impact on life and depression
How does endometriosis affect your emotional well-being?
Feeling dread each month, the nervous system on high alert all the time especially a week or two prior to period. Painful sex can have you feeling shameful about your body and your worthiness
How has endometriosis shaped turning points in your life up until now and looking toward the future?
There is a fear of not being able to have children
What do you think healthcare for endometriosis in Canada should look like?
I think there needs to be specialists who are educated and have the technology to support patients. There needs to be one stop clinics that support all issues in one area. Diet/nutrition, pelvic health, osteopath, GI specialist, urologist, physio, chiro etc. There needs to be more acceptance of patients who don’t want to be on hormonal medication and prefer surgery. Doctors need to be able to identify the depth of the endometriosis to determine who needs to be in the operating room (bowel, urinary specialists) so the patient has 1 surgery.