What are your endometriosis symptoms like? I had endometriosis on my diaphragm, bladder, ovaries, fallopian tubes, and the tissue lining my pelvis. I also had adenomyosis, where endometrial tissue grows in the walls of your uterus. I experienced stabbing pain in my diaphragm area, extreme menstrual cramps, heavy bleeding, painful urination, pain shooting down my thighs, and a constant sensation that felt like my pelvis was full of broken glass. Sometimes I’d also get cysts that caused stabbing pain on one side of my abdomen. Initially my symptoms lasted a few days each month, but they progressed to the point they would last about 14 days in a row. Sometimes I would throw up from the pain.
What was your journey to diagnosis like? It took me 7 years to get diagnosed and treated. When I first mentioned my symptoms to a family doctor she said there was no disease that could explain all the symptoms that I was experiencing, and sent me away. After doing my own research, I then went to my university’s health clinic where a doctor agreed I might have endometriosis but refused to send me to a specialist. Eventually, I found a new family doctor who sent me to an internist. The internist held my hand and told me “being a PhD student must be very stressful” — suggesting I was making up my symptoms to get out of school! Finally, I developed endometriomas on my ovaries that landed me in the ER. That led to a 9-month wait for a gynecologist referral. The gynecologist agreed I had endometriosis, prescribed Hydromorphone for pain management, and recommended surgery by an excision specialist. She then referred me to a specialized centre and I was lucky to only have a 6-week wait. I signed the paperwork for excision and a hysterectomy at my first appointment and had surgery 8 weeks later. I woke up from the procedures relieved to find out my endometriosis diagnosis was confirmed!
What has your experience with treatment for endometriosis been? My treatment started with NSAIDs and Hydromorphone, which helped somewhat with the pain but constantly made me feel nauseous. I also get migraines, so many hormonal birth control treatment options were not an option for me. Given I had suspected adenomyosis as well as endometriosis, it was recommended that I have a hysterectomy and excision. Surgical recovery was very easy for me and within 6 weeks post-op my pain was mostly resolved. I then went on Visanne (Dienogest) to resolve residual pain from recurring cysts. I am happy to report that I have absolutely no endometriosis pain anymore!
How does endometriosis affect your day-to-day life? Leading up to my surgery I would only have 10-12 “good days” per month with little to no pain. I was a PhD student when my endometriosis was at its worst and had get special permission switch to part-time studies because it was very difficult to function. I missed out on a lot of social events because some days the pain was paralyzing. I stopped travelling in the last 2 years leading up to my surgery because I could never accurately predict when I would be too sick to enjoy myself and feared ending up in a hospital far from home.
How does endometriosis affect your emotional well-being? In the 7 years leading up to my diagnosis it really felt like there was no end in sight. I was anxious that my pain would prevent me from holding down a full-time job and the thought of being indefinitely bedridden for several days every month was depressing! I am happy to report that the anxiety and depressive symptoms went away once I had surgery and the pain resolved.
How has endometriosis shaped turning points in your life up until now and looking toward the future? My endometriosis significantly affected my career path. I was on track to finish a PhD in 5 years, but endometriosis derailed that plan and it took me nearly 8! Getting accommodation at the university to allow me more time to finish my degree was not easy and I had to really advocate for myself to be able to enroll in part-time studies. Despite having graduated, I still have to constantly explain-away my lack of productivity (e.g., Why weren’t you at this international conference? Why didn’t you publish more? What took you so long to graduate?) in years when I was extremely sick and recovering from surgery. I am lucky that despite my challenges with endometriosis, I was able to fulfill my goal of becoming a university professor. I think this makes me more compassionate toward students facing similar struggles due to chronic illness and disability.
How have you found hope and support in your endometriosis journey? Accessing surgical specialists gave me validation that the pain I was experiencing was real and hope that treatment existed that could help relieve my symptoms. Seeing new initiatives such as EndoAct Canada gives me hope that there will be greater awareness about endometriosis in the future, so others don’t experience similarly long treatment delays or have their symptoms dismissed.
What do you think healthcare for endometriosis in Canada should look like? Since endometriosis affects 1 in 10 women, endometriosis identification and care need to be better integrated into medical school training. Primary care providers need to be made more aware of endometriosis symptoms – including atypical presentations – in order to refer patients for timely specialist care. Canada also needs to invest in training and hiring more endometriosis specialists. In BC we are lucky to have a Centre with excision specialists who are devoted to treating endometriosis, but this is not the case in all provinces. It would also be great to see funding agencies such as the Canadian Institutes for Health Research prioritize funding for endometriosis research, as it is currently such an underfunded area.