What are your endometriosis symptoms like? “Bad periods” are not part of my story. Beginning in my teens, I suffered from intermittent pelvic pain and low back and hip pain. By my early forties, the pain became chronic, and I began to suffer from debilitating period cramps and heavy periods. I also developed chronic diarrhea and pain radiating down my leg.
What was your journey to diagnosis like? For decades, I complained of intermittent pelvic pain. Ultrasounds always came back as “normal”, and no further testing or treatment was undertaken. I repeatedly underwent physiotherapy for hip pain, which did not resolve my symptoms. About five years ago, my symptoms became chronic and now included diarrhea. A gastroenterologist diagnosed me with IBS. All imaging came back as normal, and my family physician undertook no further steps. Endometriosis was never mentioned or considered. My gynaecologist at the time dismissed my pain, saying it was likely the result of the “stress of life”. In October 2019, I read the story of a woman with endometriosis, whose symptoms all mirrored mine. I was shocked. I found The Endometriosis Network of Canada and asked my family physician for a referral to one of their recommended specialists. That gynaecologist has now diagnosed me with suspected endometriosis and is providing me with treatment. From my very first symptoms to now, about 34 years have passed. It has been 5 years since my symptoms became chronic.
What has your experience with treatment for endometriosis been? It is difficult to find a gynaecologist who specializes in endometriosis and all of the current treatment methods, including surgery. My family physician referred me to a specialist of my choosing. I had to wait about six months for my first consult. The specialist suggested we first try the Mirena IUD, which has helped. I am now on the surgery list and in the meantime, am taking Orilissa, which has also helped. I also take Gabapentin, which has taken the edge off my pain, and I see a specialized physiotherapist for pelvic floor physiotherapy. All of the treatments have helped, but I still have chronic pain.
How does endometriosis affect your day-to-day life? I have pain from the time I wake up until I go to sleep. Some days now, it is not very noticeable. Other days it is difficult to manage. My digestive symptoms have been very difficult to manage at times, and have an impact on my activities. I am able to work and participate in activities. If I have been having severe pain, my mood can be greatly impacted. I become very short-tempered with others.
How does endometriosis affect your emotional well-being? I take medications for sleep which thankfully also help my pain. When in severe pain, I become anxious and depressed. I have not had sexual intercourse with my husband in a year due to pain.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Thankfully, my symptoms have not had a negative impact in this regard.
How have you found hope and support in your endometriosis journey? Hope began when I found others with a similar story to mine, and The Endometriosis Network of Canada. I also found hope when I found a specialist who did not dismiss my pain, and was committed to helping me. My family has been supportive. Identifying the likely cause of my pain meant that I could speak about my health journey with others more, which has led to further support.
What do you think healthcare for endometriosis in Canada should look like? Education around periods and pelvic pain, including endometriosis. I learned virtually nothing about endometriosis until I was 46 years of age. I thought that it was simply “bad periods”. Education for physicians around different causes of pelvic pain, and the different ways in which endo can present itself. Physicians need to further investigation the source of women’s complaints of pain and stop dismissing symptoms as soon as imaging comes back as “normal”. Endo should not simply be dismissed as a benign condition. Chronic pain may not be cancerous, but it is not “benign”.
What do you think it is important for people to know about the experience of having endometriosis in Canada? In order to receive a proper diagnosis and treatment, you must educate yourself and advocate for yourself. Waiting times for consults and surgery are very long. The public is not educated about endo.