What are your endometriosis symptoms like? 

Prolonged periods of bleeding (5-8 weeks at a time), extremely painful periods, heavy bleeding, my lower back is so sore it feels like something is broken, I have constant pain up my right side from from hip to up under my rib cage, fatigue, nausea, random abdominal cramping outside of when I have my period, and constipation.

What was your journey to diagnosis like? 

I first had my period when I was 13. It was horrible right from the start. I grew up in a home where we didn’t talk about periods so I also didn’t talk to my doctor about it until I was 16 or 17. At that time I was put on the pill, and it definitely helped for a little while. When I went off the pill I was prescribed Viox to manage inflammation around the time of my period. That also worked well for a while but it was discontinued so back on the pill I went.

It wasn’t until I was 26 that I started bleeding constantly even when taking the pill. So we tried different versions. This is about the time I started asking if it was concerning that I was bleeding for such long periods of time or that the pain was so bad and was told it is normal. As years went on I started asking to be referred to a gynecologist, I was always denied. Then when I was about 28-29 I went to the women’s clinic for a pap. The doctor was a woman so I told her my history and she also told me it was normal. I went off the pill in my early 30s and within a couple years the extreme pain was back and I was having random “bleed outs” where out of no where blood would just suddenly gush out of me. It made it hard to want to leave the house. At that point I opened up to some friends about what was going on and I was encouraged to get angry and demand a gynecologist referral.

My doc had just left his practice to go teach school so I went back to the doc at the women’s clinic. She agreed that I was probably in pain but gave all the excuses as to why I couldn’t go see a specialist….the wait times were too long, the doctors were too overworked and my favorite…”what if I send you to a gynecologist and someone with cancer doesn’t get in because you took the spot?”.

I left feeling defeated but within a month I got an appointment invite in the mail for an ultrasound. Then a month after that got a call for an appointment with a gynecologist….and it was just two months away (I had been told the wait times were 2-3 years). That very first appointment the doc immediately assumed it was endometriosis and asked why I had waited so long to see a specialist. He wanted to see if trying out a high progestin birth control pill would help with symptoms so I tried that for a few months. The pill gave me extreme brain fog to the point of memory loss so we decided to do surgery and see what was going on. So there I was, 22 years in and finally got a diagnosis. It was great to finally have an answer but also heart breaking that there are no excision specialists on the east coast. That diagnosis was almost 4 years ago and its only now that I’m getting to see an endo specialist in Ontario.

What has your experience with treatment for endometriosis been? 

I have been on probably 4-5 different kinds of birth control that did help in the earlier years but did nothing by the time I was 30. I do see a pain specialist and we’ve tried things but nothing has helped my endo pain (he is able to help with my fibromyalgia though!). It seems much of my pain comes from adhesions. I do all the things when it comes to natural methods to help….eating well, moving my body, supplements, massage, pelvic floor physio….you name it, I do it or have done it. All those things do help me to keep going on a day to day basis but they certainly don’t take all the pain away.

How does endometriosis affect your day-to-day life? 

It hugely impacts my day to day life. I have to work from home, I can’t clean, unload the dishwasher and for the most part can’t do much cooking (and I was a food fanatic until about 2 years ago when things got worse for me), I am very limited in the physical activity that I can do, I find it hard to play with my niece and nephew, I am not able to have my own family due to the daily pain, I can’t do the hobbies that I love, and because you just never know when pain will strike, it makes making plans hard (and stressful!).

How does endometriosis affect your emotional well-being? 

I have always had terrible sleep so I’ve never been sure if that’s an endo symptom for me or not. For the last few years I do take meds for sleep support so that has helped in that area. I work VERY hard to make sure I have good mental health, in my situation I know how easy it would be to slip into a depressed state. I do have bad medical related anxiety which makes it so hard to constantly be making calls and getting tests, etc. I am so lucky to have an amazing partner, as having an intimate relationship is basically impossible in my current state.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

I was lucky that I was able to make it through university and grad school, even while pain was bad at times. I had a hard time in my first job where I was expected to do some physical work and be able to go out for field work at a moments notice and there was little empathy for health related issues. I am lucky now to have a job where I am able to have accommodations to make things work. We were unable to start a family because of this illness. I’ve been in pain since I was 13 so I was never really even able to consider having kids.

How have you found hope and support in your endometriosis journey? 

I don’t have a lot of support, although I will say that I finally have a good team when it comes to the medical side. My pelvic floor physiotherapist, massage therapist, nurse practitioner and pain specialist are all amazing and I’m lucky to finally have people I can count on. I have a very understanding partner so I am lucky in that regard as well. My family is close by if I need them, which is a comforting thought at times of bad pain.

What do you think healthcare for endometriosis in Canada should look like? 

Everyone should have access to a doctor or nurse practitioner that will believe them when they come in talking about experiencing horrible pain and/or prolonged periods of bleeding. We should also have access to endometriosis specialists so that we don’t have to first have ablation surgeries, which for many (myself included) results in even more pain. The earlier these cases are seen by the right doctor, the better off we will be. These cases don’t have to get as advanced as what we are currently seeing. These come from years and years of neglect in the current system.

What do you think is important for people to know about the experience of having endometriosis in Canada?

That its not uncommon, that these symptoms are not normal, and that everyone should have a reason to care about this disease. It effects families, friendships, work places, the economy….I could go on and on. Everyone has a reason to care about this disease.