What are your endometriosis symptoms like? Before my pregnancy I had limited symptoms and wasn’t actually aware of a significant problem. I had some pain during intercourse, fatigue, and occasional aching in my pelvis. I attributed it to my juvenile arthritis diagnosis. After I stopped solely breastfeeding my daughter I started having severe periods that resulted in hospital visits. I had intense, burning cramping that didn’t relent for days at a time and that weren’t touched by over the counter medications. I was met with a lack of kindness and support from multiple emergency doctors who didn’t look into things deeply. I had multiple ultrasounds that showed fluid in my pelvis over the course of several periods. I was told it was likely ruptured cysts. I also suffered extreme fatigue, migraines, and sciatica during my period. The migraines would be the first thing that let me know my cycle was coming. The pain was excruciating and I couldn’t take care of my daughter for multiple days each month. 

What was your journey to diagnosis like? I thought I had endometriosis after 3 severe periods. I had read the disease could show up after a c section. I had asked for a referral to a gynaecologist from my doctor, which he agreed to. However, I was waiting so long that I decided to see a fertility doctor, despite not knowing if we wanted a second child. This doctor was private and allowed me to direct his investigation. My care was delayed with covid, but eventually after a hysteroscopy that didn’t show much he thought I had endo and referred me to a specialist. I got in to see the original gynaecologist around the same time as the endo specialist. The specialist immediately suspected endo and performed the first and only complete internal exam where he felt the nodules. He also sent me for a specific ultrasound to look for a c section defect, which was seen. I then had surgery and had a normal period afterwards. He confirmed the presence of extensive endometriosis throughout my pelvis. I have not had a migraine or sciatica since. 

What has your experience with treatment for endometriosis been? I was recommended hormones, but I have reacted poorly to birth control and progesterone treatments in the past. I declined to take any medication before my surgery and was treated with excision. For my next appointment my doctor would like to discuss hormonal therapy, but I am not sure of my comfort level. My surgeon has been supportive and helpful. 

How does endometriosis affect your day-to-day life? My quality of life was damaged severely. I was constantly scared of the pain coming and couldn’t perform daily tasks. I couldn’t pick up my child, change her, or even play with her. I was depressed that I couldn’t make plans well in advance because I never knew when a flare up would come. I couldn’t exercise during my period or ovulation time and lost some of my fitness gains, which resulted in my back seizing from inactivity. I am a naturally active person, so this was a huge obstacle. I would not have been able to work and was grateful to be a stay at home mom with a lot of family support. 

How does endometriosis affect your emotional well-being? It caused depression and I still suffer from anxiety that the pain will return. I was lonely and found that many comments doctors made were hurtful and lacking in knowledge. I was told ‘maybe you just forgot what a period feels like’ by two different ER doctors and was dismissed initially by the fertility specialist. I couldn’t and still can’t engage with my partner sexually as I’d like and miss the easy intimacy we shared before my pain began. 

How has endometriosis shaped turning points in your life up until now and looking toward the future? It confirmed a decision to have only one child. I couldn’t bear to go through this again and not be able to give my child the attention she deserves. I am nervous to return to work in case I need time off to manage my pain, as it’s unlikely the surgery will have permanently fixed my issues. 

How have you found hope and support in your endometriosis journey? My parents and husband were instrumental. I had complete support from them. I also valued the online support groups I joined. They made me feel less alone and less like a failure. My surgeon was the first medical professional who made me feel like I wasn’t crazy and there was an actual problem that needed solving. I am forever grateful to him. 

What do you think healthcare for endometriosis in Canada should look like? The system is horrible. I would not have had my surgery without having paid for private care that sent me to the specialist. Otherwise I would have waited another 6 months from that to meet a surgeon. I was blown off multiple times and had to fight aggressively to obtain appropriate pain medication. Narcotics are all that worked for me and I had zero issues with substance abuse with how I took the medication. Even though I was careful I was treated as if I was seeking drugs for recreation, which has caused a massive distrust in our system. Doctors should listen and be educated in what endometriosis looks like. It is far too common to be this misunderstood. 

What do you think it is important for people to know about the experience of having endometriosis in Canada? That it is a real and debilitating lifelong disease. That it is not just a painful period, but can damage multiple aspects of your life. I also think that people should understand how poorly our medical system treats people with chronic conditions.