What are your endometriosis symptoms like? To me, having endometriosis is like a bunch of minor inconveniences piled on top of each other. It’s having periods where you bleed through a super tampon and pad combination in a few hours, embarrassingly onto the fabric of the couch, or a car seat. Sometimes its just like really bad cramps. Sometimes it’s brain fogginess, or bloating, or bowel symptoms. It’s missing out on fireworks to run to the bathroom, or just feeling drained. It’s not eating all the things you want to so you don’t feel bad the next day. It’s no one thing, but together it can be amount to a lot.
What was your journey to diagnosis like? It’s a weird one. I had always had bad periods – lots of blood and lots of cramps, but as a girl I had my mom telling me she used to throw up on her periods and miss school, so I think I just reckoned I should be happy my periods were normal. Heavy, but normal. I hit my mid twenties, and my periods started getting more irregular. Having just moved provinces a year before, I didn’t have a primary physician, so I went to a walk in clinic, armed with a years worth of period tracking data. The doctor there told me it was probably just stress, and sent me for a blood test for STDs. Nothing came of that, but I thought I might wanted to try birth control again to regulate my periods. A few years prior I had been on the pill, but after trying 2 varieties, didn’t like how they affected my emotions, and stopped taking them. So I went back to the same clinic, and asked to get an IUD, liking the idea of something simple. They got me a referral to another walk in clinic that did insertions, so I met the doctor there, got my prescription, and came back for the insertion. It was actually painless, no problems at all. A month later, I had to go back for a check, and the doctor couldn’t find the IUD, so sent me for an ultrasound. It was on this ultrasound that they discovered a 6cm cyst on my right ovary. They decided to monitor it. So after 3 months, another ultrasound, and getting my results from the clinic, saw yet another doctor, who again, said monitor. It grew larger. 9 months after the initial finding of the cyst, I was recommended for an MRI with contrast. However, in the lower mainland in BC, my appointment was scheduled for 6 months from then. Fed up with waiting, and wanting more information, I paid $800 for a private ultrasound. The results came back, and my doctor referred me to a gynecologist. I got in pretty quickly, the results of the MRI were not clear, and there was a suspicion it could be cancerous. An oncologist said, not likely, but I still had a large cyst, at this point 10cm in diameter. So I was scheduled for a laparoscopy, with about a 6 month wait time to remove the cyst. When it came out, it was 12cm across. I kept my ovaries. I was also diagnosed with stage 3 endometriosis, and the surgeon excised everything she could while she was there. So I guess at the end of the day, I got a diagnosis because of an ill placed IUD. I don’t know what would have happened otherwise.
What has your experience with treatment for endometriosis been? I maintain having an IUD, which helps me personally by limiting how much I bleed on a period to a manageable level. I also was experiencing a lot of bowel symptoms after surgery, so I researched and found a dietician who specialized in inflammatory illnesses. This has personally helped me a lot by giving me a framework to figure out what foods work best for me. Because I don’t have a lot of pain, and haven’t had a change in my quality of life besides the surgery and recovery, I have not been recommended or looked for other treatment.
How does endometriosis affect your day-to-day life? There was one time I was on transit, heading downtown to meet friends, and I really really suddenly had to use the bathroom. Like I had to find one in the next 5 minutes. So I turned around and went home, back towards stations and areas where I knew public washrooms existed. This happened frequently – having to give up on things I wanted to do to hang out near a toilet – until I got a diet figured out. It’s not perfect now, but I miss out on way less things.
How does endometriosis affect your emotional well-being? I think there was a time when I was waiting for surgery and having this giant cyst (endometrioma) on my ovary and not being able to do anything that caused me a lot of stress. It was about a year and a half of my life, from having it discovered to having it surgically removed that I just felt uncertain. Sure, I gave it a cute name (tenny, since it was the size of a tennis ball), but I was freaked out to have this thing growing in me, and no knowing what caused it, or before having a surgery date, when it would go away. Asking what I could do differently to have prevented it. Being scared to travel or do anything that would cause it to rupture. And now that it’s been gone for years, I have a nagging, “what if one grows back? would I even know?” hanging around. And while I haven’t tried to have kids, my doctor told me that if I wanted to, we would need to talk about it first. I know I shouldn’t worry, I’m doing really, really well, but sometimes you can’t help those little thoughts from infiltrating.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I have seen it affect my career a little. My job involved travel, and when I was waiting for surgery, I decided that travel (in this case to a 3rd world country), would not be the right thing for my health. And by turning things down, and even having an office of people aware of why you were turning things down sort of stalled my career for a few years. I was prioritizing my own health, and didn’t think about the experience I was getting, or what I might be missing out on since it was just so low on my radar. I’ve had a super supportive partner throughout this journey, and my relationship has not suffered, but the question of starting a family is lurking, and I don’t know what that means (though who does, really).
How have you found hope and support in your endometriosis journey? I found support on Reddit in r/endo or r/endometriosis. It’s a really great online community, and it personally helped me by bringing to my attention symptoms that I had brushed off as something else, and really just making me feel like I was not alone (and seriously, that I have it so, so, so good compared to a lot of people). Through this group, I actually ended up connecting to a man building a mobile app Visana, and joined the project as a UX/UI designer to help get their idea off the ground. So it’s been sort of a way to support others.
What do you think healthcare for endometriosis in Canada should look like? I would love it to be something that doctors know about, or would ask more questions to get to the bottom of your history, instead of brushing things off as “stress”. If there was better knowledge from primary physicians, there is a potential that an initial diagnosis could come sooner. This also means working on wait times for scans or surgeries. I suppose though, more than anything, I just want this to be recognized or heard and normalized, not a back door conversation, something to hide or be ashamed of. I think just general education of the public would help people to understand what is or is not normal, and be more comfortable talking about it with their doctor, or even just their peers.
What do you think it is important for people to know about the experience of having endometriosis in Canada? 10% of women is the stat I’ve heard. That is so many people. Yet I didn’t even know this was a disease until I was diagnosed, and that was less than 5 years ago. I just think the world could use a little more understanding, and talking about things can help with that.