What are your endometriosis symptoms like? My symptoms include a lot of painful bloating. I get that dreaded endo belly frequently. I get stabbing pain in my sides where my ovaries are. Particularly my right side, it often feels like a knife is going into my ovary. I get pain in the center of my uterus that feels like that stabbing knife pain but also like someone took a carving tool and carved my insides. Sex with my partner can be brutal. It’s so painful and really makes the experience awful. I want to be able to enjoy sex with the person I love and this disease prevents me from that. Other symptoms include fatigue. There are some days I have to sleep most the day because I’m so fatigued. I also have a ton of issues going to the bathroom. I’m terrified of going number 2. It’s always super painful and is almost never solid. I tend to get constipated for several days then when I do go, I can’t stop pooping. This non-stop bathroom usage always triggers a flare and causes pain. I also get super nauseous and experience several hot and cold flashes. 

What was your journey to diagnosis like? My story is very similar to others. At age 16 I began noticing pain in my right side around my lower abdomen. I would tell my Mom (who also suffered from stage 4 endometriosis) and she would take me to the hospital. We suspected it was endometriosis but due to the symptoms we always went to the hospital unsure if my appendix had went. This happened a lot and the hospital always sent me for an ultrasound which almost always showed nothing. There was a few times that the ultrasound did show a cyst in my ovary that they suspected had burst. The hospital would never do anything and prescribed me Tylenol 3 for the pain. I was essentially told to « just walk it off. » I brought these concerns to my family doctor at the time who prescribed me birth control. Birth control helped a little but but made me feel like I wanted to claw myself out from the inside out. I also put on weight as a result. The doctor also wanted to get my periods back to a regular schedule. My periods were always irregular and sometimes never came. This went on for a few years until my mother and I went into the doctor’s office and fought together to get me referred to a specialist. Having my mom there to advocate for me helped tremendously as she also suffered from the disease but is also a registered nurse. I then played the waiting game to see a specialist. When I finally did see the specialist it was amazing. I had finally felt heard. At the age of 23 I had a laparoscopic surgery that confirmed I had stage 1-2 endometriosis. The specialist excised the endometriosis lesions and placed the Mirena IUD inside. I also had them remove my appendix. This took about 7-8 years before getting diagnosed. I’m now 25 going on 26 and suffering again from pain. I’ve gone to my new family doctor to refer me back to the specialist where I will hopefully receive another surgery. 

What has your experience with treatment for endometriosis been? Most of the treatment I’ve received has been birth control. For some, birth control can work wonders, but for others like myself it can cause a ton of issues. I’ve had a lot of weight gain and I often feel my emotions swinging badly. With the Mirena IUD my cystic acne has gotten worse. 

How does endometriosis affect your day-to-day life? Endometriosis affects everything in my day-to-day life. It affects my moods which can swing rapidly. It also affects my ability to complete assignments for my university classes. The fatigue causes a lot of brain fog making it hard to write essays. Worst of all, endometriosis has taken my ability to work out fully. It hurts to exercise! Running and jump rope tend to trigger painful flares. Instead I do yoga, weight lifting, and walking (which sometimes triggers a flare), and I’m a rock climber. Sometimes the pain makes it hard to climb but climbing is the funniest form of exercise that I can do.

How does endometriosis affect your emotional well-being? Endometriosis has taken a tremendous toll on my mental health. I do find myself more anxious and depressed. This doesn’t help when I want to be intimate with my partner but I’m going through a painful flare and just can’t get into the mood. In previous relationships, the boyfriend sometimes blamed themselves for causing the pain. Even now that I’ve found my man, it takes a toll. I’ve always struggled with sleeping problems and the painful flares don’t help. Sometimes I lay awake from the pain. 

How has endometriosis shaped turning points in your life up until now and looking toward the future? My partner and I have decided (at least we’re 90% sure) that we will not have our own children. I’m afraid of the pain and complications that would occur if I did get pregnant. 

How have you found hope and support in your endometriosis journey? Support groups have been the number one form of support for me. I’m a member of several of the Alberta support Facebook groups. It’s a fantastic place to go and read other stories and vent frustration. 

What do you think healthcare for endometriosis in Canada should look like? Education! There needs to be more education about endometriosis and just women’s diseases and disorders in general. Doctors need to learn about this and stop dismissing their patients concerns.