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Endometriosis Stories

By bringing together our stories, we can help other people in Canada, including elected officials and policy makers, understand the impact of endometriosis across the country.

Everybody’s endometriosis journey is unique and we want to learn what it is like for you to live with this condition.

If you are interested, please Share Your Story. You will be redirected to a secure page where you can learn about how your information will be used and share your story.

The experiences and opinions in these posts belong to the individual who shared them in their personal capacity, and not necessarily to EndoAct Canada or any other group or individual. Please note that consent for these posts to be included in research has not been provided by every contributor. Researchers seeking to use information shared on this website should contact info@endoact.ca.
  • To receive a diagnosis of Endometriosis took me eight years of persistently advocating for myself, starting from the age of 13. My periods were never normal, and I knew this from talking to my friends about their periods. Between the ages of 13 and 20, I saw six different general practitioners before one of them finall

  • From age 14 to 21 I must have had weekly visits with my family doctor. He never sent me to any specialists, just tried different birth control pills because he kept telling me “all girls my age have cramps”. When I was 21 my appendix burst, and during the surgery, the general surgeon noted my abdomen had a lot of r

  • Endometriosis is debilitating. There are days I’m in so much pain that I can’t get out of bed. It is really hard to live your life when you are terrified the pain will come back unexpectedly.

  • I knew the pain that came with my periods was not normal right off the bat. I would be the only one missing days of school, the only I knew who needed help walking to and from the bathroom just to painfully urinate. At 14 years old, I wouldn't know any better, but my mom did. She knew this wasn't normal. Appointment af

  • I am constantly tired and in pain everyday, some days I find it hard to do anything, but because I have a child I force myself to get up— I fear my tiredness impacts my ability to do as much with her in a day. Because of where mine is located I have pain sitting in most positions for too long. I also have pain in my

  • When I am at my greatest pain it feels like my insides are being slowly ripped. I have stabbing pains in my pelvis. It hurts to do everything - go to the bathroom, have sex, walk around, I curl up some nights in the fetal position crying for hours contemplating whether I want to go to the ED again only to likely have m

  • I live with daily cramping, sometimes manageable, sometimes so bad I can't get out of bed. The pain radiates through my left side and down my back and leg. Gas pain brings me to my knees. I don't remember the last time I went a week without spotting or bleeding. I suffer from chronic fatigue and depression

  • The pain and effects on my life triggered depression so in addition to having to deal with bad pain I had to deal with clinical depression. My sleep was affected because of the pain, my sex life, my family and friends life, everything. Since my surgery I feel much better and my depression and sleep have improved too. I

  • I suffered from painful periods my entire life, and when I was 27 I began to cry during a Pap smear and begged the student doctor to please help me. I was missing work and unable to function 2-3 days of the month because of the pain. Before that I had been told to take birth control, suck it up, pain is normal, use dif

  • Endometriosis is something that I'm constantly having to plan around. I know that when I get my period I'll be bedridden, so I have to decline social events because of it, or constantly try to reschedule things. If I can't cancel or reschedule something, I make sure to take my pain relief with me, and set alarms on my

  • Constant dull pain, sometimes sharp pain.

  • My family doctor dismissed my pain for 2-3 years saying everyone experiences cramping. I tried to tell him that there was "no way this is normal!". As a teenager I started to need to visit the emergency department for pain management during menstruation. I was diagnosed by an Emergency Physician who sent me to a surgeo