What are your endometriosis symptoms like? What started as a cycle related symptom has now become chronic. Throbbing burning leg pain that radiates from my hip down to my ankles, plagues me almost daily. 

What was your journey to diagnosis like? It took 10 years to land myself in a gynecologists’ office because I specifically requested the referral from my family physician. I had complained of my period for years, had gone to the hospital for pain, had many ultrasounds, and struggled a great deal missing out on school, work and events. I took matters into my own hands and I told my doctor I believed I had endometriosis and wanted to see a specialist. Although hesitant, she obliged. My experience in the obstetrics and gynecology office was incredible. She took special care and believed my pain. She thought I was likely to have endo based on my symptoms and experiences. Laparoscopic surgery took place and an endometriosis diagnosis was confirmed. After receiving the specialist report, my family physician made the comment, ‘so you actually have endometriosis after all.’

What has your experience with treatment for endometriosis been? From the get go of having terrible periods I was put on birth control. Fast forward to specialist care at 26, I was put on hormones that were not fun! Although helping my pain slightly, they drudged up side effects that were at times intolerable. In addition to medicinal treatment I have searched for other treatments like pelvic floor therapy, acupuncture, gluten and dairy free dieting. Out of these, I have found the most relief with weekly acupuncture. However, this has become a financial burden. I am self employed (one of the major reason’s for this is flexibility around my pain) and so do not have drug coverage. Laparoscopic surgery is the only form of treatment I will have moving forward. After my first surgery I felt better for almost an entire year! I hope it can do the same for me again.

How does endometriosis affect your day-to-day life? I have designed a life around this disease. I am self employed so I can lay down in the middle of the day if I need to. I have a basket of medications, pain relievers, essential oils on my nightstand at 32 years old. I live in sweatpants because regular clothes are too painful. I am not the fun friend. My social interactions are limited and usually cut short in the first place due to some kind of pain. I would do anything to live a regular life at my age. To feel awake enough to stay out with friends or pain free enough to get a full time job that has benefits and coverage.

How does endometriosis affect your emotional well-being? I have suffered with bouts of depression since my menarche. Insomnia has also plagued me a great deal. I go through hormonal changes each month that worsen the feelings of despair and emptiness. I spend days crying from the moment I wake up to before I go to bed. Lack of sleep contributes to awful days. It makes it very difficult for my partner and I to have fun. Although sex can be painful at times, the emotional aspect has driven more of a wedge into our intimacy. I fear of being in pain. I fear of not being enough of a woman. I feel like a failure. 

How has endometriosis shaped turning points in your life up until now and looking toward the future? My career has landed where it has because I am unable to reach my full potential due to pain, symptoms and treatment. I thought I would have made so much more of my life, but I haven’t. I have gotten by because that’s all I can give. Endometriosis takes up a lot of space in my life. At 32, the question of starting a family wreaks havoc in my mind and heart. I don’t know that I could do it given my current physical and mental state. 

How have you found hope and support in your endometriosis journey? I have an awesome group of family and friends who never complain about hearing me complain. I love them dearly. I also use social media and my business platform to spread awareness for endometriosis. The support garnered from this is huge.

What do you think healthcare for endometriosis in Canada should look like? There has to be more funding and research done to find other ways to diagnose endometriosis. If that is accomplished, early intervention will be key to helping young women suffer less.