What are your endometriosis symptoms like? I often get debilitating pain that gets so bad I can’t stand, it hurts to walk, breathe, even lay down. There is no escape from the pain. I also fell asleep behind the wheel while waiting for a train to pass. My fatigue is constant and makes everyday life quite difficult.
What was your journey to diagnosis like? Ever since my first period at 15 I have experienced debilitating pain. All through high school I was dismissed by multiple medical professionals. My mom took me from doctor to doctor (bless her heart, she never doubted me for a second), but I always heard the same responses. “She’s new to getting her period. She will get used to it.” “She’s young and looking for attention. Have you tried counselling?” “All women go through this. You will get over it.” It wasn’t until 2017, when one of my pain convulsions almost made me drive off of circle bridge, that I went into a walk in clinic begging for someone to help me through tears. The kind doctor there decided to hear me out. He was the first medical professional to take me seriously and he sent me to a specialist. This step alone took 6 years. In my first meeting with this specialist, after telling him all of my symptoms, he said “well we can test you for endometriosis, but you are too young to have that. There is no way you have it, but we will do the test to get that option out of the way so we can move on and figure out what is causing you all this pain.” I had never heard of endo before this, so I had lots of questions. He consistently dismissed me, not answering any of my questions and just reassured me that I don’t have it. I specifically asked him, “what if you do find it? Would I need another surgery to get rid of it?” to which he responded yet again, “don’t worry, you won’t have it.” I was 22 years old when I went in for my laparoscopy. I was told it would be a 20 minute, non-invasive procedure to confirm that I do not have endometriosis. I woke up 45 minutes later to an extra incision site, an endometriosis diagnosis, and the news that I was operated on without consent. Not only did he reassure me I wouldn’t need an operation and dismiss all of my questions that I had just in case, he also went ahead with cauterization. Upon research, I found out that excision is the safest and most reliable surgery whereas cauterization allows the disease to come back quicker and spread faster (like a forest after a forest fire). So he burned up my left ovary at 22 years of age without consent. I definitely would have chosen excision, but I was not given an option. He operated on me while I was put out for the initial diagnostic laparoscopy. It took 7 years of dismissal and being told everything was in my head just to find out that way. I was crushed. I felt betrayed by Canada’s health care system, especially when I called the hospital to ask about my rights and was told that the specialist has the right to make that call. He decided to put my fertility at risk at age 22, not me.
How does endometriosis affect your day-to-day life? I was told the only treatment was birth control moving forward. After trying 3 different kinds and suffering serious weight gain and other side effects, I asked to switch specialists. My new specialist helped me find a birth control that didn’t have such severe side effects and put me on a medication that helped with my day to day pain. I also had to go to pelvic floor physiotherapy. Though this was helping with my back and pelvic pain, I was a student and it also drained what little money I had left. Treatment is very expensive and not always an option for everybody. The birth control eventually started messing with my cycle and my pain returned to its full potential and then some, but my specialist refused to operate on my due to my age. Even excision is dangerous for fertility and she didn’t feel comfortable in case something went wrong. Though I appreciated her actually looking out for me, I couldn’t tolerate the pain anymore. I found a specialist in the United States who was wiling to do my surgery for me. It was costing me $25,000 Canadian (just the surgery and medical fees, not including flights or stay). But I started saving up because $25,000 meant maybe 10 years pain free. COVID hit and I had to postpone my surgery.
How does endometriosis affect your emotional well-being? I have had to leave work or take time off because I simply can’t stand up straight or walk due to the intense pain. This uses up my sick days as I do not have any sort of medical leave. I also had to use sick days to go to my specialist appointments. My fiancé is so very helpful in taking care of me when I’m that bad, but it always leaves me feeling guilty and helpless. Fatigue also takes a toll on me. As a teacher, I try to have the most upbeat, positive attitude all day, everyday. Sometimes it’s interrupted by gut wrenching pain, nausea, fatigue, etc.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I often feel a loss of hope knowing there is no cure and treatment is so hard to come by, expensive, or simply doesn’t work. I’m also feeling guilty most of the time because I never want to hang out with friends because I am too tired or hurting. Chronic fatigue is something many people roll their eyes at. It’s not understood as something that truly affects life quality and therefore you love with guilt people put on you for being a “party-pooper,” “lame,” “procrastinator,” etc.
How have you found hope and support in your endometriosis journey? The more I learned about this disease, the more I shared on my social media platforms like Instagram and Facebook to help educate people who were close to me. I joined some support groups and it was nice to talk to other women who go through the same things I do and to finally realize I am not alone. My family has always been really supportive, and so is my fiancé and that is a huge help in getting me through each day. I have hope that with more awareness, maybe someday there will be a cure!
What do you think healthcare for endometriosis in Canada should look like? This is a disease that affects 1 in 10 women. It’s not overly rare. I think every health professional should at least be aware of what it is and be able to recognize it, especially in young women and girls who don’t know better. No 15 year old girl should be made to feel like her very real pain is all in her head by medical professionals for 7 years. Health professionals should be better educated so they can spot symptoms before its too late and some surgeon makes the decision to remove it aggressively.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Be prepared to have to save up thousands of dollars to travel outside of the country to have it dealt with. Don’t expect to have it caught before 7 years, and stay strong while being dismissed. You know your body and don’t let uneducated medical professionals make you feel bad about yourself and out you down.