What are your endometriosis symptoms like? Pain, swelling, constipation, diarrhoea, bleeding, suppressed immune system, parasympathetic immune system fatigue

What was your journey to diagnosis like? I have had symptoms since I began menstruating in 1982. I was investigated and diagnosed after 2 years of recurring severe anaemia. I received a diagnosis of Stage 4 endo, adenomyosis and PCOS in 2000.

What was your experience with treatment for endometriosis been? I was diagnosed after being investigated for severe anaemia. I was waitlisted for treatment and paid $35,000 to get surgery in the US at an endo centre. I had 5 more surgeries in Canada from 2000 to 2002. I am no longer a surgical candidate. I am only eligible for pain meds now. I was told my symptoms were a result of being a fat lazy Indian. I woke up once during surgery to the surgeon making derogatory remarks. I am questioned about drug seeking behaviour for pain management every single time when I actually the reality is I deny myself regular pain management. Saskatchewan refused to pay for trigger point treatment which allowed me to remain employed. I pay $3,000 plus for pain relief treatment. I will have zero retirement funds. Thanks Saskatchewan.

How does endometriosis affect your day-to-day life? I have zero quality of life and am considering voluntary euthanasia.

How does endometriosis affect your emotional well-being? I sleep 3 hours a night if I am lucky. I have almost no intimacy with my partner. I have extreme anxiety bcecause every day is a living nightmare. My system is so overloaded I have now developed severe anaphylactic allergies to unknown sources.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I have several degrees and was considered an expert in my field. My career is over because I am now disabled. Travelling to see family is an ordeal.

How have you found hope and support in your endometriosis journey? Zero support other than my partner.

What do you think healthcare for endometriosis in Canada should look like? Males in the healthcare system should be given a virtual endo experience if they want to work with endo patients. The healthcare system should be more accessible for endo care treatment and aftercare. We want better diagnosis and treatment which does not call our mental stability into question or engage in victim blaming or gaslighting.

What do you think it is important for people to know about the experience of having endometriosis in Canada? We are not faking the pain.