What are your endometriosis symptoms like?
My main symptoms were difficulty having bowel movements, debilitating cramps that shoot down my legs, and constant nausea. I had severe cramps before my period, during my period, and after my period. They didn’t seem to end. I needed a mobility aid when the cramps were at their worst – this went on for months. I almost had to drop out of school to accommodate my physical condition. The nausea meant I couldn’t eat more than 1-2 meals a day at times. I felt dizzy and weak all the time.
What was your journey to diagnosis like?
My mother has endometriosis as well, so we knew there is a family history. I got my first period at age 13, and it was incredibly heavy and came with intense cramping. I got my period twice a month, three times a month, every other month – it was so irregular. I went to the hospital monthly because we were never sure if I had cramps or appendicitis due to the severity of pain. Every single doctor gave me a single advil and told me it was a regular menstrual cycle no matter how much I pushed. Thanks to my mom, I was finally able to see a specialist in my city, got an exploratory laparoscopy, and got my diagnosis all at age 18.
What has your experience with treatment for endometriosis been?
I am lucky to live in a city with an amazing specialist. Unfortunately her wait times are incredibly long so we tried to medically manage with birth control and other medications for as long as possible. The best ones had no effect, the worst increased my symptoms tenfold. I had an IUD placed after my laparoscopy that was only effective for one year. After that, my symptoms rapidly came back and I was unable to see a specialist due to relocating out of the city. I used a mobility aid and took extra-strength painkillers daily. I have been unable to get an appointment with my specialist for months despite being on a waitlist, and I will have to drive 2 hours for the appointment whenever one is available. I am a full-time college student so it’s not an ideal situation at all.
How does endometriosis affect your day-to-day life?
I began studying for my dream job in September 2021. It is a very physically demanding program. I have to perform at my best every day, despite the intense cramping shooting through my whole body. I used a mobility aid for the first month of classes. This raised concerns within my college who made me question whether I needed to drop out due to my physical condition. I was too committed – I gave up my mobility aid. Some days I come home from classes crying from pain. I can hardly eat due to my persistent nausea and this leaves me dizzy and unable to perform at my best. I have come close to fainting in several classes. I am employed with my school as a tutor and note-taker. I don’t get to take sick days when my symptoms flare up. I double-dose my painkillers and hope for the best.
How does endometriosis affect your emotional well-being?
I am in a very physically demanding field – I restrain horses and cattle, I pull blood on sheep, I wrestle giant dogs and fractious cats. I get bit and scratched and kicked. On top of this, I experience constant severe cramping. My prescribed medication and IUD stop my heavy bleeding but increase my cramping. I have to do my best work every day to hit a small vein with a needle, restrain a squirmy cat, while feeling like I’m being ripped apart from the inside. I considered dropping out of my dream school to accommodate my specialist appointments. I can hardly focus in classes because I face constant nausea, acid reflux, cramping, dizziness, and general weakness.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
My specialist has been an absolute saint. She got me in for my first surgery at age 18 with no hesitation. My mother believed my symptoms immediately as she suffered through the same thing as a young adult. My girlfriend runs me warm baths and warms up heating pads when I get home from a rough day of school/work. My surgery had a quick recovery period and relieved my symptoms for a year. My specialist immediately put me on a waitlist for another surgery when I told her my symptoms came back. We are discussing a complete hysterectomy despite me being young and without children.
How have you found hope and support in your endometriosis journey?
Believe young women when they go to the emergency room. Offer young women hysterectomies without requiring them to have children or permission from a parent/significant other. Train more medical professionals to manage this condition so we don’t wait months-years for an initial appointment. Make specialists more available.
What do you think healthcare for endometriosis in Canada should look like?
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It’s a silent killer. I’ve been told I don’t have a disability despite feeling like I’ve taken a bullet. It’s not as simple as an Advil and a heating pad.