What are your endometriosis symptoms like?
Daily pelvic pain, like 10/10 pain, fatigue, anxiety and stress about when I’ll be in pain or when I won’t be in pain.
What was your journey to diagnosis like?
I am still seeking a confirmed diagnosis. I have a suspected diagnosis. I have been dismissed by doctors and I have an appointment with a new gynecologist soon that I’ve been waiting 8 months for.
What has your experience with treatment for endometriosis been?
Treatment is often minimum. You get told to take Advil or Aleve or offered birth control or other hormones which do not treat the disease.
How does endometriosis affect your day-to-day life?
I almost dropped out of school because of my pain. Daily pain is exhausting. I have to constantly think about saving energy for important days or events. I often have to cancel going out on short notice. I don’t know how I’ll feel day to day and that causes so much anxiety
How does endometriosis affect your emotional well-being?
Endometriosis can make every relationship hard, especially an intimate one. We look fine on the outside but are struggling so much on the inside. Every time I am hit with a pain flare up I am frustrated and sad and have to grieve feeling normal.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I don’t know if I can have children and I don’t know if I want to. My body has been through so much pain and I don’t want to put it through any more pain or loss. I have found a career I love and I put all my energy into that.. .but I also worry about Endo slowing me down or causing me to miss work.
How have you found hope and support in your endometriosis journey?
Reading other people’s stories has helped me feel less alone. it makes me so sad and angry that so many of us have to suffer through this disease.
What do you think healthcare for endometriosis in Canada should look like?
Whole body /holistic treatment. Endometriosis is a full body disease. It affects all of me, including my mental health. In needs to be treated as such. There needs to be better and faster ways to diagnose and actual treatment of the disease, not just to mask symptoms.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Being in pain should be enough of a reason to be treated, and the focus should not be just on fertility. You have to wait so long to see a doctor. And then when you do see them, they might tell you things like, « just have a baby » or « take some Advil ». The gaslighting for Endo patients is awful and it needs to stop.