What are your endometriosis symptoms like? Excessive bloating of the lower abdomen. Chronic lower abdomen pain. Sharp stabbing pains that often result in vomiting and inability to function at normal day to day tasks.
What was your journey to diagnosis like? It took me a number of years to get an endometriosis diagnosis from a specialist here in Toronto. I was bounced around from three separate OBYN’s for multiple tests and referrals. I was fortunate enough to land in the hands of an expert here in Toronto. I expect to have excision surgery at some point in 2021 which would have happened sooner if I wasn’t working through some fertility preservation first.
What was your experience with treatment for endometriosis been? Many of the pharmaceutical remedies that are used in the treatment of endo are not available to me as I’m a hormone positive breast cancer survivor. We’ve been treating my endo with pain medication.
How does endometriosis affect your day-to-day life? I’m a high functioning corporate professional who has missed a number of days from endo pain. There will be hours on end where I’m unable to get out of bed/leave the washroom/uncurl from the only position that I’ve been able to find that provides me minimal comfort. There have been occasions where I’ve been vomiting and screaming from the stabbing sensation in my lower abdomen. I’ve had to buy leisure pants with elastic waistbands just to accommodate the endo belly.
How does endometriosis affect your emotional well-being? It’s an emotionally draining disease. Often times I’m unable to sleep through the night from pain, discomfort and stomach bloat. Sexual intercourse is sometimes impossible because of the pain and discomfort. My mood fluctuates between irritable to quite irritable after a day of pain and night of no sleep all of this heightens anxiety.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Knowing that I have an expert on endometriosis in my care team and that my surgery is within reach is so relieving. I see the light at the end of the tunnel but know many women suffering don’t have the resources based on demographics or sense of urgency that I have been fortunate enough to benefit from.
What do you think healthcare for endometriosis in Canada should look like? We need more experts in this field with more access to treatment and surgery on an expedited basis.
What do you think it is important for people to know about the experience of having endometriosis in Canada? I was one of the rarely fortunate ones who was shuffled through the system through many referrals until I found a local expert. I attribute part of this to the fact that I am a complex case and am already in the system with fantastic doctors and are caregivers. It has taken years to find the right specialist and come up with the best operative plan to hopefully achieve the end of endo for me.