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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.
  • My journey with Endometriosis began at 15 when my periods were so unbearable and monthly of staying home suffering with severe cramping and heavy periods. I was diagnosed finally after an emergency operation at the age of 18

  • the pain became so intense and persistent that I became severely fatigued and sleep-deprived. It sometimes felt like my own body was slowly trying to shut down and felt that the whole world was against me. As the pain worsens as the weeks goes by, it came to the point where I couldn't control the pain with just over th

  • Endometriosis has caused my life to basically just become hell on top of being trans. I feel that being trans was a bigger hinderance than the pain and it just felt like another anomaly in my body to set me back that came with being different. I have not yet decided to go to collage/university due to a worry over my bo

  • I dealt with these worsening symptoms through high school and my undergrad. I started to have severe bleeding and cramps that made me miss school and work. When I started my master’s, I started to have pain with sex and with exercise. I would go for a five minute bike ride and vomit from the pain. I finally started d

  • On going chronic pain in my lower abdomen, my bowels, my back and down my legs. Fatigue - brain fog- memory issues. Irregular bleeding between periods Unpredictable crippling painful periods. Socially suffering - taking a toll on my family and support people. Unable to function enough to work.

  • I was trying to get rid of my baby weight 10 years ago working out. I was doing my 75th sit up and my groin was in so much pain. I went to the doctor and was told it’s basically menstrual pain. I later moved to Prince George and a doctor told me he won’t know if it’s cancer or endometriosis till he gets in there.

  • I was in nursing school in a pandemic when the symptoms started. My pain felt like a sharp stabbing pain and it was located on my right side. This pain usually happened prior to my menstrual periods but eventually then became an ongoing issue. The other symptoms I had was constipation, chronic fatigue, brain fog, heada

  • This disease is like no other; Prior to excision surgery, I daily felt like I was being impaled by a tree branch in my abdomen coupled with feeling like my back was being sawed in half. I also had extreme fatigue, “foggy brain”, migraines, unpredictable cycles, up and down moods, and digestive challenges that were

  • I have anxiety because I'm always anticipating pain. I'm afraid to be in public alone when a flare up hits. Sometimes something as simple as urinating gives me anxiety because pain usually follows. I've suffered from depression on and off because of my limitations. Sometimes I feel like a burden to my husband. I get ti

  • My symptoms come and go, are sometimes vague, and difficult to connect with any definitive imaging or testing. I've been on Visanne for the past couple of years which has definitely helped decrease the severity of my symptoms but not get rid of them completely. My most significant symptoms are recurring left sided fl

  • Endometriosis can make every relationship hard, especially an intimate one. We look fine on the outside but are struggling so much on the inside. Every time I am hit with a pain flare up I am frustrated and sad and have to grieve feeling normal.

  • I deal with severe cramps, exhaustion, occasional nausea, and pain in lower back and down the back of my legs.