What are your endometriosis symptoms like? 

I was only 10 when I started my period and almost from the beginning I would be pacing and rocking from the pain in my pelvis, back, and legs. The recommended dose of NSAIDs didn’t touch the pain and I’ve missed too many classes, hangouts, and workdays trying to get through it. In some ways, pain was easier, because it had a start and end. But now there’s fatigue, joint and muscle aches, burning with urination, and layers of symptoms that make it hard to know who I would be without this disease.

What was your journey to diagnosis like? 

20 years. It took 20 years for me to be diagnosed. Some of that was because I didn’t know how to advocate for myself. Everyone told me periods are « supposed to hurt ». When I asked GPs and gynecologists why my cramps were bad, why it hurt to urinate around my periods, they would offer answers that normalized and downplayed my pain. I eventually insisted on a specialized ultrasound after seeing a gynecologists for fibroids. From that, I was presumptively diagnosed. The relief I felt to know it wasn’t normal was…incredible. But I am so sad for my young self who lived with so much pain and doubt for so long.

What has your experience with treatment for endometriosis been? 

Continuous birth control is helping me but it’s not perfect. It’s stopped the monthly ruptured cysts, and reduced some pain, but the fatigue, cystitis, and aches are still there. Accessing more advanced care is a huge challenge because of waitlists. I haven’t had a chance to speak with a specialist yet.

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

In high school, endo meant keeping a massive NSAID bottle in my back pack and sitting at my desk with every muscle in my body clenched waiting for the day to end so I could curl up with a hot water bottle. In college, it meant missing classes, and outings, and gym days from exhaustion and cramps. As an adult, it means constantly worrying that the fatigue and sick days will undermine my performance. It means being afraid of leaving the house around the start of my period because a cyst might rupture, or I might be caught without painkillers.

How does endometriosis affect your emotional well-being? 

When the world tells you your pain isn’t real, it becomes your fault. And the weight of that is devastating in a way that’s hard to explain. The depression and anxiety that’s wrapped up in getting through every day becomes so normal. Every once in a while I stop and realize how exhausted I am by things that used to be easy.

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

Endometriosis is hard on my partnership. The symptoms and treatment can wreak havoc on libido, and fatigue and pain create emotional strife. It’s hard to be in a good mood when everything hurts. Endo has factored into my decision not to have kids. I don’t feel like I can trust my body to have the energy to be a stable parent, and the impact on my fertility would create huge struggles.

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

These things make my life with endo better: Flexible work where I can manage my symptoms. Empathetic providers who believe my pain and take the time to explain and educate are amazing. I haven’t met any of these in real life, but the doctors featured in EndoAct seminars give me hope. Reddit and support groups make me feel connected and help me stay up to date on research, and verify the (often outdated) information from my medical practitioners.

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

I spent 20 years in pain because of a disease that is under recognized and treated. I want endometriosis to be common knowledge so when people start menstruating and have irregular pain, their friends, family, and GP know about endo. I want patients to be referred to specialists who are educated, up to date, and well informed about endometriosis and don’t spread misinformation about fertility, pregnancy as treatment, or deny the pain. I want more trained surgical specialists and research so we become more effective at treating and understanding endo and related conditions.

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

Specialists are hard to find, hard to access, and are underpaid for the incredibly delicate and multidisciplinary work they do. We need to fund endometriosis education, research and the doctors who do incredible work.