What are your endometriosis symptoms like?
Terrible pain which would come at any time, and could be very distracting from even important tasks. I had a hysterectomy and still had pain because some tissue needed to be left behind at the time. The pain limited my participation and enjoyment in life.
What was your journey to diagnosis like?
I had bad cramps since I got my period when I was 13 so I kind of grew used to the pain; and accustomed to doctors and other people trying to convince me that this was normal and I had to do a better job of dealing with the pain. After a life threatening infection event in my late 20s was finally diagnosed with clear birth defect that included a double uterus, one of which was collecting but not draining blood. After a hysterectomy which also removed some endometrial tissue it was clear that a serious problem was fixed, but after a while, pain was returning, and it seemed to be less like period pain.
A follow up surgery was performed to remove additional tissue. After a few years, the pain started to return and I also felt like I had an infection, although nothing was clearly showing in the blood work at that time I was referred to a pelvic floor physiotherapist and they identified a lump that seemed like it might me scar tissue but was a major trigger point for pain. Through imaging I was later diagnosed with a common ovarian cyst and referred to a gynaecologist agreed with the ovarian cyst but also saw something on the imaging that could not be explained, and the gynaecologist also could not explain my now intense pain and feeling of infection, and therefore referred me to Centre for Pelvic Pain and Endometriosis in Vancouver, BC. I completed a detailed questionnaire, the Drs. at the Centre did a detailed review of my history, and the Drs at the Centre did pain mapping, which included asking me where I felt pain as the Drs. investigated with the ultrasound and palpation. This process has never be done on me and it clearly and conclusively identified that there was a physical problem that needed to be corrected. There was no longer a mystery. The Centre tried non-surgical treatment but thanks to repeating the the clinical pain mapping and combined with how I felt it was affecting the quality of my life, it was clear I needed another surgery. During surgery the results of the pain mapping were confirmed, and remaining endometrial tissue (that was in a tricky location) was found and removed, as well as a large infection. It is less than a year after my surgery, I am in the 45 – 55 age group, and my life is so much better now with the mysterious pain and infection now gone.
What has your experience with treatment for endometriosis been?
I had hormone therapy, pelvic floor physiotherapy, treatment for depression, exercise and surgeries. Plus I had naturopath and acupuncture care. Although ultimately I had access to gynaecologists, specialists, physiotherapy, imaging, etc., almost every step required several months to wait because of lack of resources (in the years prior to the pandemic). If I quickly add up total waiting time between surgeries and specialist appointments, the total is more than a few years of delays, and in the meantime my life was a nightmare for each waiting period.
How does endometriosis affect your day-to-day life?
When I had pain, which was most of the time, it was often so strong that it prevented me from going to work (or staying at work), often stopped me from seeing my friends, visiting family, having sex; basically my life was stopped. I could not predict when I was going to have pain so because of that I had to cancel many plans and chores. my life was controlled on the pain, it was very difficult and frustrating.
How does endometriosis affect your emotional well-being?
The pain and effects on my life triggered depression so in addition to having to deal with bad pain I had to deal with clinical depression. My sleep was affected because of the pain, my sex life, my family and friends life, everything. Since my surgery I feel much better and my depression and sleep have improved too. I could not even work and now, returning to work is something I am looking forward to.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Endometriosis affects every aspect of one’s life, the pain is very limiting and in my case the pain came with nauseas, dizziness and vomitting … so I could not do basic things let alone more complicated things such as work, courses, exercise, travelling, etc. It also affected my relationships: marital, familiar, friends, work, etc. Now that I am pain free I can look forward to the future.
How have you found hope and support in your endometriosis journey?
Even though it often seemed I had “mystery pain and illness”, I found hope when medical professionals including GPs, specialists, psychiatrists, psychologists, counsellors, physiotherapists, etc. took my pain seriously. Also, my spouse, my family, friends and work were supportive..
What do you think healthcare for endometriosis in Canada should look like?
Suspected and diagnosed endometrial problems and pain, diagnosis and treatment would have enough funding with a high enough importance that we would only have to wait a 1 month instead of sometimes 3-6 months just to see a specialist or have treatment or have a surgery. The various specialists would be supported and encouraged by the medical system to solve “mysterious” problem that we are supposed to live with because the system things that it is normal for women to live with pain and suffering.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
People should know that it is a real medical problem, that has direct and significant impact on society both functionally and financially. At the personal level, it is very limiting, affecting every aspect of one’s life.