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Savanah

What are your endometriosis symptoms like? My symptoms are extreme debilitating abdominal pain, back pain, vomiting, diarrhea, migraines, swelling and more.

What was your journey to diagnosis like? Ever since I was 14, I always had major problems related to my period. I would cry hysterically from the pain, I’d spend the day in bed wondering if this amount of pain was normal. I’d always miss school when I got my period. With time, it seemed to get worse and every time I’d mention it to a doctor or nurse, they’d say that it’s normal for girls to be in pain when they have their period or they’d say that I’m exaggerating. I believed them and went on dealing with this until I was 23, when I was at work and fainted from a sudden excruciating pain. I was sent to the emergency because they thought I was either having an ectopic pregnancy or it was appendicitis. They did surgery on me and discovered that I had level 2 endometriosis. This really made me furious because all my attempts to inform my doctor that the pain I was dealing was not normal were always discarded for almost 10 years, only to find out that I was right and did have a chronic illness. After the surgery, the hospital forgot to call me back for a follow-up appointment and did not get any treatment for two whole years. I am now followed by a good gynaecologist but I am now 27 years old and I feel like the whole process really failed me.

What has your experience with treatment for endometriosis been? I was first put in Visanne and it did not help me, and I am now on Elagolix and it works wonder in terms of pain, but the side effects are really strong.

How does endometriosis affect your day-to-day life? Endometriosis makes life really difficult. When you are in pain, it literally incapacitates you, and you are not able to do anything. The amount of work and school days I missed because of endometriosis is unacceptable. And the worst of it all is that people don’t know what endometriosis is, and therefore they don’t believe you or your symptoms. Most of the time, you get judged because people think you are simply exaggerating your period symptoms. 

How does endometriosis affect your emotional well-being? Personally, one other symptom I have is pain during intercourse. This really affects your mental health when in a relationship, because it can damage it.

How has endometriosis shaped turning points in your life up until now and looking toward the future? It has happened several times that I have missed exams at school and that I had to deal with the loss of points on my own because I knew that the teachers would never accept “pain from my period” as a valid excuse. It has affected me negatively all my life.

How have you found hope and support in your endometriosis journey? I found support groups only last year, but it reassured me to know that I wasn’t all alone in this situation.

What do you think healthcare for endometriosis in Canada should look like? I think it needs major improvement. There is not enough awareness and even endometriosis patients are not educated enough on the subject. Also, there is not enough support.

What do you think it is important for people to know about the experience of having endometriosis in Canada? I think it’s important for people to understand that this is an actual chronic illness and that people are not exaggerating.