What are your endometriosis symptoms like? When the pain is at its worst, my whole body aches. It feels like my body has a migraine. Every joint hurts and my muscles burn. There is a deep throbbing pain in my stomach and it feels like my uterus is trying to twist and rip through my body. The pain travels down my legs and leaves my feet tingly and twitchy. I have trouble walking. Sometimes it feels like there is knife inside me, tearing me apart. My shoulder aches and burns. I can’t sleep from the pain and the inflammation in my body. It makes it so much harder to deal with everything when I can’t sleep. I am nauseous. My digestive system is thrown into complete disarray and I can hardly eat anything without serious consequences. When I am not on hormones, this happens for approximately 3 weeks out of the month. I might get a few days off and then we start the cycle over again.
What was your journey to diagnosis like? When I was 12, I got my period. Immediately the pain was overwhelming. I used to roll on the floor with a pillow over my mouth to muffle my screams. My doctor told me it was normal to have painful periods and gave me a big blue pill to dull the pain. The pill helped but upset my stomach badly. When I was 14 I fainted at school from the pain. Again, no concern from my doctor that this might be abnormal. I started thinking I just needed to be tougher. I lived in fear of my period and popped Ibuprofen religiously. I stopped telling doctors about my pain. When I was 21 I had an ultrasound on my pelvis for an unrelated issue. The tech found evidence of an endometrioma which indicated probable endometriosis. I finally had my diagnosis, 9 years later and completely by accident.
What was your experience with treatment for endometriosis been? After my diagnosis at 21, I was referred to a gynecologist who told me that it wasn’t a big deal and that as long as I didn’t wait until I was “older” to have kids, I would be fine. She told me that it was “normal” to have pain during sex with endometriosis and offered no more support or advice. When I was 31, I was struggling to get pregnant. I was referred to another gynecologist in Ottawa. She immediately noticed my pain and discomfort during an internal exam. She referred me to a pelvic floor physio and started me on a better road of supportive healthcare. She listened to me and made me feel safe sharing my symptoms. I will forever be grateful to this incredible physician. She tried to do surgery to ease the inflammation and suffering but when she went in to do the surgery, she found very extensive endo everywhere (called stage 4). I was then referred to another gynecologist in Ottawa who specializes in endometriosis. As soon as I went into his office I felt so heard and affirmed. He said “None of this is in your head.” I cried in relief during our first appointment. It is hard to contextualize your own experience with pain, but after this I started to realize that it had been a very tough road. He performed my surgery (6 hours), including resecting a part of my diaphragm and removing the endo from my bowels, appendix, pelvic cavity and bladder. It took me 6 weeks to be back up and about. For about 6 months, I felt pretty great. After that time, it started to return. This is uncommon for it to return so quickly. Doctors don’t know why that happens. I was told that when this happens, it means I am not a good candidate for more surgery since it will likely just return again. 3 years on from my surgery, I can manage the pain and suffering if I am on hormone medication and stick to a very strict diet and regular physio/osteo/massage/nutritional counselling/yoga. It still affects me every day. Managing my endometriosis is a full time job. It is exhausting.
How does endometriosis affect your day-to-day life? Endometriosis is like a weed that takes root and invades your whole life and body. It has taken so much from me as a young woman. I should be living at my peak energy, health and fitness. Instead I have a full time job just trying to stay functional. Every day, I feel like I’m running a marathon that doesn’t have a finish line. I keeping thinking the finish line is just around the corner but it never ends. The most devastating part to deal with has been infertility. My husband and I have been trying to start a family for 5 years. I have been through 2 surgeries and 3 rounds of IVF with no success. Last year, it became clear that due to the damage to my ovaries from endometriosis, I wouldn’t be able to have my own genetic children. It is hard to describe how hard this hits to someone who hasn’t lived it. How do you mourn the death of a baby who never existed? It was a deep, hollowing grief that left me absolutely devastated. A year and a half on, I am still grieving this loss. It will always be a broken piece of my heart. My husband and I are moving forward now with other options. We are determined to start a family. I am determined to be a mother. A big part of me is so grateful that I won’t be able to pass this hell on to my daughter.
How have you found hope and support in your endometriosis journey? I have been so lucky in my life to have incredible support. I have relied on my family a lot to help me get through the toughest days physically and emotionally. I have found counselling really helpful and affirming. It has helped me to process this whole experience and come to terms with my reality. I have also found talking to other women with endo really helpful. I’ve joined a few support groups and made some friendships that have been so valuable. This whole experience is so hard to explain to someone who hasn’t lived it. It really helps to talk to someone who gets it. I’ve also started some advocacy work that has helped me take some of my power back. It gives me purpose to think that I can (in some small way) move the dial and make it easier for those who come after me.
What do you think healthcare for endometriosis in Canada should look like? The number one most important thing that endo patients need is more awareness in the medical community. Endo affects so many aspects of health and is so poorly understood outside of endometriosis specialized gynecologists. Most doctors know almost nothing about it. I have found that even many gynecologists are very ignorant of essential information. I spent so many years sharing my symptoms into what felt like a void. Part of this awareness needs to be a nation-wide action plan to ensure that we are managing the big picture of this disease. Politicians need to get informed and get active. We need specialized centres of excellence that make the most of our resources and ensure that endo patients don’t fall through the cracks (read: gaping grand canyon sized holes). We need more research dollars going into this disease because we know so little about it and treatment options are woefully inadequate. We need more awareness and support from employers and insurance companies around this disease. Neither take this disease very seriously and many struggle to work full time.