What are your endometriosis symptoms like? Walking is the only activity my body is able to tolerate. Any more than this and my body goes into protest mode and leaves me defeated. Bent over in pain, barely able to move, while I wait out the stabbing and throbbing pain. If I’m able to, I make it to the couch with my heating pad for hopefully some relief. I have to walk every day in order to help keep my pain at bay. But what makes me feel better sometimes still causes me more pain. Every day and every moment is unknown with endometriosis. I can be walking along, fine and then bam, I’m not. I get sharp stabbing pains so very randomly and it’s so intense it brings you to your knees. People on the streets see me walking normal and then nope, can barely walk. The unknown is the worst part. These sharp stabbing pains can also turn into fiery meat grinder type pain, or perhaps electric stabs up the vagina or rectum. All types of pain from endometriosis are exhausting, debilitating and overwhelming. Not knowing when and where they’ll show up is the hardest part. It really limits what we commit to, socially.
What was your journey to diagnosis like? For years I was in and out of doctor’s offices, trying desperately to figure out what was going on with my body. In the end I was told I had IBS. I had a hard time believing this was it, but after multiple doctor’s visits, what more could I do? I dealt with the symptoms. Years later my symptoms continued to develop, changing and adding new symptoms and issues. A large liver cyst was a blessing in disguise for me. For it wasn’t until I was opened up that the surgeon saw ‘endometriosis everywhere’. The surgeon briefly mentioned a referral to a gynecologist, and then later acted like it wasn’t even necessary. I didn’t know anything about endometriosis at the time and assumed my previous gynecologist would be sufficient and refer me to someone else if not. I had to push for this request, and boy was I wrong. They did my surgery and my stage 4 mess was way over their skill level. I was left in more pain than before; awful. But I was officially diagnosed with endometriosis at least. I was then referred to their partner who had more advanced training in endometriosis. I went with this option as I was in such pain the thought I’d waiting for a true excision specialist for years was unimaginable at the time. But you better believe I had a referral for a second opinion sent out as soon as my surgery was over as I knew my endometriosis journey was not over.
What has your experience with treatment for endometriosis been? With my first two non-specialist surgeons, I was only offered hormone therapy treatment, specifically Visanne and Orilissa. And I had an Mirena IUD inserted as well. I did not experience much pain relief from these medications, however I was unable to continue my treatment with Orilissa due to side effects like insomnia and hot flashes and mood swings. Visanne was tolerable for over a year, but was affecting my moods and not providing pain relief so it was stopped as well. I am lucky I live in a region with access to pelvic floor physiotherapy, which I learned about through endometriosis support groups and endo accounts on social media. I learned a lot just by going to physio and would highly recommend it. I am also lucky that I have the funds and coverage for services such as chiropractor (pelvic floor and nerve damage from surgery work), massage and naturopath. So far, I’ve had two surgeries for endometriosis. The first one was incomplete and left me in more pain – this was ablation and not an endo specialist. The second surgery was incomplete, but mostly excision and the physician was slightly more trained in endometriosis. I feel better after this surgery but disease was left inside and I still experience pain.
How does endometriosis affect your day-to-day life? Every day is a gamble. Day to day, minute by minute, you never know when the pain will strike… even when you’re doing everything ‘right’. I work with adults with developmental disabilities and a number of our folks are very sensitive and empathetic when someone is hurt or in pain, so I have to be very careful not to show when I’m in pain. However sometimes the pain just comes out of nowhere and you yell out in pain as a natural response. I’m beyond lucky to work with an incredible team and we have to play this little game of yelling out random things when I’m in pain to distract the participants from what’s actually happening. We have to turn my horrible pain into a fun game. And boy is it hard. On these days, by the time I get home, I’m completely drained and have very little energy left for my partner. Many days I’m just not able to perform those every day tasks of doing the dishes, making food and sometimes, even showering. It’s just too much. And I feel so guilty these days. I feel like a burden.. though my partner is very supportive and never thinks of me that way. I’m very lucky that way, unfortunately not everyone is as lucky as me.
How does endometriosis affect your emotional well-being? Endometriosis affects my mental health more than I ever thought it would. I have such anxiety with medical appointments as a lot of my symptoms had been brushed off for many years. Standing up for yourself is a hard and exhausting task. Being in constant pain of some kind also does a number on you. It’s exhausting and frustrating and so hard not to feel completely defeated. After years of issues and failed or incomplete treatment, it’s only natural you feel so disappointed and start to lose hope. You worry that you’ll be like this forever. The worst part is grieving your past self. Not knowing if you’ll ever be the person you once were. Not knowing who you are now. It’s hard. It affects your sleep. It affects your relationships. It affects your sexual health and activities. It affects your self esteem.
How has endometriosis shaped turning points in your life up until now and looking toward the future? So much of my life is impacted by endometriosis. If I was still working at my old job, I would be let go by now. I have to take too much time off for pain, countless appointments and many necessary treatments. This is the case for many people, it’s simply hard to keep a job with a chronic illness. I am lucky I’m in a position with some flexibility and understanding. My sex life is also severely impacted. Sometimes I’m just in too much pain or discomfort for intercourse or other sexual acts. It’s just too much. Other times when we try, we have to stop due to pain. And this is with multiple tools to help reduce pain, such as using cannabis, OhNut rings, all the lube and only certain positions. Sex was always such a big and important part of me and my life and it’s hard to accept how much that has changed. Being able to conceive was also a big issue for me, having to have in-depth conversations with a new partner is not something I envisioned having to do. I have a very low chance of conceiving and likely not possible without fertility treatments and procedures. But due to my many issues, I’m not even sure I want to put my body through more stress. It’s a difficult thing to potentially choose yourself over a potential child. Insert all the guilt.
How have you found hope and support in your endometriosis journey? I beyond lucky that I have a partner who supports me unconditionally. He never makes me feel like a burden or broken. He loves me the same on my high pain days as he does on my low pain days. He never complains if I’m not able to do an activity at the last minute, or need to leave early, or need him to run a bath or take care of my basic needs. I’m so lucky I found him. My family is general are beyond supportive and even offered to pay for tests and treatment outside of Canada if I am unable to wait the long wait times. Again, so very lucky. I’m also incredibly grateful for finding online support groups on social media and many endo accounts. It was in these places that I found some comfort, knowing I’m not alone, it’s not all in my head. I also was able to find quality and up to date information about endometriosis and the proper care that is needed, along with suggestions for managing symptoms.
What do you think healthcare for endometriosis in Canada should look like? Endometriosis needs to be understood more widely. Too many medical professionals are not educated enough, or don’t have the latest information. I also think more specialists are needed and less surgeries should be completed by non-specialists. For example, I could have had one surgery by a specialist instead of three separate surgeries. I also should have been referred to a specialist right away, not operated on when my case was beyond their area of expertise. Testing. More testing needs to be done better. Had I had better ultrasounds or testing competed, perhaps the surgeons would have been better prepared for my surgery or passed me off to someone with more expertise, instead of just opening me up and having a look. I think doctors could be much better prepared. I also think doctors should not just push medication. I do understand medications are necessary for symptom relief for some people and that’s okay, but people should be aware that a holistic approach is needed to tackle this disease. Patients should at least have all the information to be able to make the correct decisions about their care and what’s important to them.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis should be included in curriculums at school. Periods and related topics need to be more openly discussed. Too many people suffer on silence and don’t have access to the necessary information they may need. Endometriosis affects so many people in Canada. It needs the recognition it deserves by the government, by doctors, and by heath professionals. People need to know how debilitating this invisible illness can be and how one day you can be ‘okay’ and the next you struggle to exist.