What are your endometriosis symptoms like? The first time I experienced endometriosis pain, I thought I was dying. I had always had relatively easy periods, but after I had my son (almost 10 years ago) I had to have a D&C to remove placenta that had been left behind. Most periods since that surgery, I have noticed the spot where they had cut out the tissue. It wasn’t great, but it was bearable, and some months I hardly noticed it. Nearly 2 years ago, that was when things changed. Like I said, I thought I was dying. I thought it was cancer or who knows, maybe an alien was trying to get out. Nothing I had in my medicine cabinet would touch the pain and the spot where I’d had the D&C was the epicenter of hell. I was able to sleep (luckily I can sleep under most circumstances) and when I woke up after 6 hours it felt like the worst hangover. If you’ve ever had a migraine, it’s like a migraine in your uterus. I had to drive to pick up my son from school and ridiculously enough I took him to his swimming lesson. I found a quiet hallway to curl up and cry.

What was your journey to diagnosis like? I spoke to a doctor through a health app and asked specifically to see a gynecologist who I knew was newer to town and had room on her schedule (my family member was seeing her and knew the situation). I got in within a few weeks. She sent me for an ultrasound and took my history. I told her about my irregular periods and how they put me on birth control pills at 16 as I only got my period every 3 months. The gynecologist said I had endometriosis and wanted to insert an IUD but I didn’t want to go that route because I keloid scar and I had to stop taking bc 10 years prior due to my feet swelling to the point where I couldn’t walk. My feet got better, but started swelling again around the time the endo pain started in earnest.

What has your experience with treatment for endometriosis been? I can’t use birth control pills because of past health issues. My gynecologist had some other suggestions but I was not sure what to do, I just knew that birth control was not it. I’ve been relying on Motrin and CBD/THC 1:1 tincture to help me limp along. It helps dull the pain. I don’t know what to do. It seems to be getting worse over time and I’m scared that I won’t be able to keep going like this. I feel stuck and scared, honestly.

How does endometriosis affect your day-to-day life? I use a period tracker to be prepared for the pain. I take Motrin and CBD/THC tincture the night before. I can’t take any canniboids while working as I need a clear head, so I rely on Motrin. Sometimes it’s a race against time. I’m so thankful for pain on the weekend or pain in the evening, because then I can dose myself and lay down. No one is relying on me. The first time I had endo pain it scared me so much and my work was not supportive. Between the pain, the stress at being treated the way I was, I missed some critical errors by another person and the end result is that I was fired. They didn’t think it was real and they had no interest in supporting me. In the next 6 months trying to figure out what was wrong with me, find another stable job, and deal with the trauma of being treated like that, I didn’t much want to be alive, honestly. I’m constantly in fear that I will make a mistake when the pain is bad. I’m constantly in fear that it won’t just be a few days, it will be never-ending, searing pain. The anxiety is a lot. My family has a ghost of me now. I push myself to at least curl up on the couch near them so I’m not hidden away in the bedroom. I can’t leave the house when I’m a mess. I may go in the car just to leave the house when it’s not too bad, but I won’t go into stores, I wait in the car. I can’t imagine having to go out and be social and meet people. I don’t want to have to explain to anyone who doesn’t already know me why I can’t do things. I don’t know if the endo is responsible for my feet, but I can’t exercise. I can’t even wear my shoes because my feet are too swollen, so getting outdoors and living life is not a thing these days. I have had some pain outside of my period, thankfully it’s just been twinges and a few pretty big stabs, I’m grateful.

How does endometriosis affect your emotional well-being? Like I mentioned previously, anxiety is huge. I’m worried about the pain, will it get worse, will it just continue without end one day. Will it cloud my mind and result in mistakes at work? Will I be fired? Long-term pain leads to depression because this is not going away. I had brutal nerve pain in my face for 10 years (corrected by surgery) and that taught my body to manage pain better than many, but at least that had an out. It took me 4 ENTs until I found a competent specialist, but I know surgery would solve my issue, there was a light ahead. With endo I worry it will only get worse. I’m extremely lucky to have the best partner ever and he supports me through all of this. I think he always will because he’s amazing, but I’d have doubts if he was a lesser man.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I lost my job because of endo. I was not operating at my best and I missed a mistake. It was humiliating and demoralizing. It’s terrifying every day. I was accepted to a Master’s program and I’ve been picking away at courses while I work and I have to take it easy because stress completely details me. I have no energy to connect to others. It’s me and my immediate family, I have nothing left over and I used to be a very social person. I feel I was really lucky. I was on birth control for almost 20 years and I was able to get pregnant after 8 months of trying. I have just the one child, so I don’t know if I could have had another. I feel like I got extremely lucky.

How have you found hope and support in your endometriosis journey? I really can’t answer this positively. My man has been amazing, but I feel all alone in this in the outer world. No advocates and I’m scared to tell my newer job about this because I don’t want to lose my job.

What do you think healthcare for endometriosis in Canada should look like? Quicker diagnosis and treatment that works would be ideal. I feel really lucky because I definitely was diagnosed fast when the intense pain set in. This is absolutely not the norm. I feel like I have no choice but to limp along and I want to thrive. My child is almost 10 and I want us to enjoy our time together, I don’t want him to grow up with a mom who is always in bed or not feeling well.