What are your endometriosis symptoms like? Pelvic pain is a predominant symptom of mine. It is cyclic and nearly daily, ranging from uncomfortable but manageable to debilitating. The pain expression ranges from acute stabbing sensations to throbbing deep aches and cramping. This occurs consistently around ovulation and menstruation, and at times, unpredictably. I often experience pain during sexual activity and exercise. Additionally, I deal with fatigue, nausea and ongoing fertility issues.

What was your journey to diagnosis like? In 2016 at the age of 28, I was diagnosed with Stage 4 endometriosis through laparoscopy. Prior to being diagnosed, I had not even been aware of this disease. I equate luck as a key factor to being diagnosed: After 7 years of emergency room visits (every 9 to 12 months) for abnormal, debilitating pelvic pain, one ER doctor finally suspected endometriosis and referred me to a gynecologist with experience in treating it. In retrospect, knowing what I know about endometriosis now, I believe I presented symptoms since the age of 14, often missing 1 or 2 days of school, dance and sports each month due to extreme pain around menstruation.

What was your experience with treatment for endometriosis been? Establishing a treatment plan while trying to start a family is difficult and ongoing. Living in a small town in British Columbia, I am navigating health care without a family physician (due to a storage of doctors and long waitlists), and working with a gynecologist who does not have experience in treating endometriosis. The nearest center with known specialty care is Vancouver, and is a 5 hour travel time one way plus financial costs to get to. In 2016, I underwent ablation surgery to try and treat lesions and a cystectomy to remove a large endometrioma. I went on birth control to try and slow the growth of endometriosis and manage symptoms, which disrupted attempts to conceive but did provide relief in identifying a source of infertility. Ultimately, my symptoms returned, exponentially so, even while taking oral contraceptives. One year ago, a recurrent endometrioma was found through an MRI. I am currently seeking excision surgery while working with a fertility team to determine the best course of action to balance treatment for endometriosis with life goals I manage pain as best as possible from home with pain medications, lifestyle and diet.  Because of wait times and the lack of access to expert care in Western Canada, I wish to seek private expertise and treatment internationally. Of course, the pandemic and financial costs are major considerations, and ultimately halt action on this wish.

How does endometriosis affect your day-to-day life and emotional wellbeing? The impact endometriosis has had on my quality of life as well as my mental and emotional well-being is both difficult to describe and to admit to. The level of grief I have experienced dealing with 8 years and counting of infertility was unforeseen. I still feel ill-equipped to deal with this grief despite therapy. Managing the depression and anxiety that has developed over years of experiencing symptoms, uncertainty surrounding treatment, and the social isolation consequent from it all, is a daily reality. I hold close that I am not alone in this. It’s hard to admit that it scares me to think of where I would be if I didn’t have the extraordinary support and love from my partner and family that I do.

How has endometriosis shaped turning points in your life up until now and looking toward the future? Scaling back a lifelong love of dance due to the physical pain and fatigue that started to hinder my performance in my early twenties was devastating. Navigating missed classes, social pressure from peers and perplexed instructors throughout secondary and post-secondary education led to unshakeable feelings of guilt and a loss of confidence. After meeting my partner, countless micro and macro life decisions have been made based on the realities of living with endometriosis: which social engagements we can commit to together; where we travel is based on access to and trust of emergency medical care in the region; we chose to live where we do now to afford fertility treatments and, potentially, excision surgery internationally. We are privileged to even be in a place to do so.

How have you found hope and support in your endometriosis journey? In addition to the extraordinary support I receive from my partner and family on every level, I cannot emphasize enough the impact organizations and communities dedicated to advocacy, support and education surrounding endometriosis have made. I believe that online access through virtual platforms and social media are everything. This accessibility to information and empathetic connection bypasses physical barriers and distances; it allows for an outreach of support regardless of location; it provides a wealth of information and avenues for support, both from professionals and peers; it inspires hope. All of these being key in the journey towards health, well-being and recovery.

What do you think healthcare for endometriosis in Canada should look like? Any one of these brought to reality would have a life-altering benefit to so many living with or with suspected endometriosis. I believe that the implementation of them all would alter the course of Canada’s future.

  • Accessible, expert care regardless of demographic and location.
  • Standards surrounding accurate reporting based on science that hold media, institutes and professionals accountable for spreading misinformation.
  • Ongoing funding and research on endometriosis to further understanding of the disease, and to help evolve technologies and techniques for diagnosis and treatment.
  • Educational programming on endometriosis at all levels for school.

What do you think it is important for people to know about the experience of having endometriosis in Canada? Can you imagine the innovation that would arise across all industries when the capabilities of every person affected by endometriosis is optimized in school, at home and in the workforce because of early diagnosis, support and access to expert treatment?