What are your endometriosis symptoms like? The best way to describe how it can feel is that someone is stabbing your uterus yet wringing it out at the same time.
What was your journey to diagnosis like? The first thing a doctor told me when I was describing my pain is that it’s all in my head, I’m probably just stressed. I felt even more confused and lost. I couldn’t go to a doctors appointment alone after that for over a year. I pushed and pushed to see a different doctor, to get imaging done, etc. Nothing showed up on any of my ultrasounds. It wasn’t until approximately 2-3 years later, and having been off work for several months, that an OBGYN agreed to do an exploratory surgery. They saw endometriosis and confirmed via biopsies.
What was your experience with treatment for endometriosis been? I have found that access to care was very difficult before a diagnosis was made. I had to push very hard to see different family doctors, go to an OBGYN, get tests done, etc. After I finally received the diagnosis it opened up doors to specialty programs in BC (which we are very fortunate to have); however, it took almost a year for my referral to be processed and receive a phone call from them. After finally being accepted into this program I am now waiting another 4 months to begin due to the high demand of this program. I am positive that this will be immensely helpful, however, having to wait almost 1.5 years to start has been a challenge, especially on the days when I can’t even work or move off the couch.
How does endometriosis affect your day-to-day life? For a few months I was practically locked up in my apartment. Every time I made plans I would end up cancelling last minute because my pain was so bad. I wasn’t able to exercise, work, do the fun activities that I enjoyed, cook, clean, etc. Luckily I had a supportive partner during these times otherwise I’m not sure how I would have gotten through. Eventually I found ways to cope and get back to my day to day life. This does not mean that I don’t have bad days, they still happen and I have to cancel all my plans for the day when it does.
How does endometriosis affect your emotional well-being? Knowing you are in so much pain, and not knowing why, really does have an impact on your mental health. It doesn’t help when you get the run around from doctors, being told it’s all in your head and nothings physically wrong. I didn’t sleep for months, only getting the odd hour here or there. I ended up being grumpy, tired all the time, and not myself. This caused strains in my personal life. It was not until I started getting some relief that these problems slowly started getting back to semi normal (what I now call my new normal).
How have you found hope and support in your endometriosis journey? I found the most support from my partner. Never did he question my pain, that it was real, and he always encourage me that it will get better. And it did. I was able to find a doctor who acknowledged my pain and referred me into a program that can help. The way she just was so positive, encouraging and told me we will work on making things better together.
What do you think healthcare for endometriosis in Canada should look like? More family doctors need to be aware of the signs and symptoms of endo. Women shouldn’t be told it’s in their head and ignored. We need more programs all accords Canada. We are so fortunate to have one program in BC however the wait times are too long. There needs to be support during that wait. There is obviously a huge demand for these programs yet the funding isn’t there.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It is common and it is okay to not be okay. Women need to feel more comfortable to talk about these problems. Due to the location of the pain it is often deemed taboo to bring up and this needs to be addressed.