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
  • Migraines, nausea, chronic lower back pain.

  • I originally thought my Appendix ruptured when I first was diagnosed with it. With my flares, my symptoms range from Sharp stabbing pain that makes me unable to stand, often combined with a migraine and nausea. Then there’s the one, dull throbbing pain for about a week. Followed by nausea, emotional ups and downs , t

  • My first symptom was a constant pain on the right side (3 times mistaken by appendicitis). Then, it would be the infamous endo belly, the pressure of a balloon growing and pressing my insides. Pain while peeing and pooping. After that, it only got worse. I spent months laying on the ground, 4 days per month. Missing sc

  • After having suffered painful periods for years, they changed after having children. More pain, more bleeding, heavy clotting, and dizziness. Sometimes I missed periods. Sometimes they happened every 2 weeks, sometimes there was spotting in between.

  • I have been going to the Doctor to treat painful periods from age 12. Put on birth control age 13 to 19. 19-27 seeking help from local GP. Wouldn’t refer me to a gynecologist saying pain could be in my head and that I had IBS.

  • I got my first period at 9 years old, first felt pain at 14, then extreme pain at 15/16. My family doctor didn't care, kept giving me medications for pain (I didn't take them, just stuck with regular over the counter acetaminophen). I gave up trying, thinking it was all in my head until I was about 18.

  • I started menstruating at 11yrs old. By 13, I knew my long list of extreme symptoms couldn’t possibly be “normal”. I went to doctors, gynecologist, health clinics and spoke to nurses for almost 7 years. Each one telling me my experience was “normal”, “this is what a period is like”, “it’s all in your

  • I was lucky to have a very normal and painless period when I first got it. It wasn’t until I was 21 I started having cramps that got worse as I got older. I thought it was normal with my body changing into my twenties. By the time I was 23 I would have cramps that would leave me bed ridden until my period ended.

  • Currently, I am on year 8 of my endometriosis journey and the disease has progressed onto my nerves. I was diagnosed (finally) in 2020 and it has just gotten worse since. I am on a nerve medication to help control the fire that burns in my pelvic region and sends fire bolts down my legs when the meds aren’t working.

  • I had excruciating pain the first 2-3 days of my period. I got my period when I was 11 and the pain started about a year later. I had pain in the middle of my cycle also. I would turn pale and throw up. My mother gave me what ever pain meds ( including codeine and Valium ) that she had. I would be knocked out for a day

  • I got my first period young. I had just turned 11 years old and the pain I felt on my first period was pretty intense. I did not know what to expect. I was told it can hurt and it may take a few periods for it to have some sort of regularity. With each passing year and period it would consistently get worse and I had h

  • C'est une maladie chronique comme le diabète. Arrêtons de voir cette maladie comme de simples menstruations. Arrêtons de dire que cette femme est dans sa "semaine" ! Personne ne devrait supporter de telles douleurs qui ont des répercussions sur tous les aspects de la vie quotidienne !