What are your endometriosis symptoms like? 

It feels like someone is squeezing my pelvis in a vice while stabbing it.

What was your journey to diagnosis like? 

I had been experiencing painful periods beginning in my mid-to-late teens. I was complaining that I felt like I would pass out on my period, and my doctor’s response was “Well, some women actually do pass out” and I was handed birth control and sent on my way. I continued to complain of pain for years until I was finally referred to a gynecologist who found endometriosis on ultrasound, who then sent me to my current specialist.

What has your experience with treatment for endometriosis been? 

Treatments for endometriosis are typically band-aid solutions. I’ve tried Visanne, Lupron, and Zoladex. Treatment can have many side effects, and I gained a lot of weight on Visanne, and Zoladex is causing me to have POTS (postural orthostatic tachycardia syndrome) symptoms. I have to decide which symptoms are better to live with, heart symptoms or pain. Both suck.

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

I wake up not sure how I’ll feel on any given day. On days when I’m in pain, I usually feel it coming on, think I can handle it, make it to work, then promptly decide I need to go back home. It’s frustrating because there are a lot of things I want to be active and do, but endo just takes all my energy, and a lot of days I can barely do the bare minimum to function. It has robbed me of my ability to plan ahead and be spontaneous. It makes me feel depressed very often and has negatively affected my sense of self. I feel like a failure when I can’t do things I used to be able to do or feel I should be able to do.

How does endometriosis affect your emotional well-being? 

It’s really hard for me to not be able to do things I used to be able to do or should be able to, I feel discouraged, angry, worthless, and frustrated. I feel like a shell of who I used to be.

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

I was having trouble functioning and in a lot of pain when I was in person, and my employer wasn’t flexible in considering I had a lot of doctor’s appointments and wasn’t allowed to use sick time for them. It was considered personal leave, and they wanted me to take a full day at a time instead of just small blocks I needed, so I didn’t have enough paid leave to care for my health. I’m really fortunate to currently be in a job that is very flexible and meets my needs. I currently teach online physical education, and it is less physically intense than teaching a physical class. My position is a little bit precarious so I’m afraid of what would happen and how I would function if I had to go back to the classroom, either with younger students or in the gym.

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

I felt hopeful and supportive when my gynecologists listened to me and validated my pain. I’d been told for so long it was normal and nothing could be done. I felt really hopeful after my last surgery, which unfortunately wasn’t effective, but I am hopeful that my next one will do the job. My current gynecologist’s assistant is also a wonderful support to me. My family is very understanding and supports me, bringing me a heating pad and anything I need, and understanding when I have to slow down or stop the activity. I am going to counseling and often work through how endometriosis has affected my life. I’ve also found it very empowering to use online support groups to understand the science of my disease and advocate for my care.

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

We definitely need family doctors to have more awareness of the actual science of endometriosis and understand that pain that prevents activities of daily living isn’t normal. People who report this kind of pain should be immediately referred to a gynecologist, who should investigate and, if necessary, pass them on to a specialist if no answers are found or if the answers found are outside of the gynecologist’s scope of practice. It should not be the first treatment to provide birth control and things that mask the symptoms; real answers should be found. More specialists need to be trained to identify endometriosis and properly remove it.

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

Endometriosis is a debilitating and dynamic chronic illness and presents in many different forms and symptoms depending on the individual, the stage, and location. People need to be believed when they say they are in pain, and not dismissed or given band-aid solutions, as it causes more lasting damage.