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
  • L'endométriose n'est pas un manque volontaire de joie de vivre mais bien un mal incontrôlable, une façon de vivre imposée qui ne fait pas le bonheur. 

  • When you go to emerg due to the excruciating pain & they send you home it is so discouraging that it causes some depression. 

  • Identifying the likely cause of my pain meant that I could speak about my health journey with others more, which has led to further support.

  • The doctor performed a pelvic ultrasound and saw the endometriosis right away ... We decided on a treatment plan and for the first time in years I did not feel I had to beg, argue or push for treatment. I can not express how it felt to finally be listened to, but I cried half the way home - not from pain and frustratio

  • Être kaput 5 jours exigent de l’organisation. Je suis chanceuse d’avoir un conjoint qui peut palier à mon salaire, parce que je manque le travail à chaque mois pour cause de trop de douleur.

  • L’incompréhension et se faire dire: «Je vois que tu as mal, mais je ne vois rien donc je ne peux pas rien faire ». Croire qu’on est devenu folle et que dans le fond, c’est dans notre tête. Devenir solitaire, renfermée et incapable d’avoir des relations intimes avec quelqu’un... c’est ça l’endométri

  • Living in chronic pain and not being able to parent, socialize, work, or take care of myself at times has been extremely difficult. Some days I thought my husband and son would be better off without me and I was an extreme burden on both of them. Watching from the sidelines and missing out on things with my son was ter

  • I ended up over time changing my job to something more sedentary to avoid missing work. I used to work as an RN in hospitals, and eventually moved into occupational health nursing, and my role in this type of nursing allowed me to work from home.

  • Narcotics are all that worked for me and I had zero issues with substance abuse with how I took the medication. Even though I was careful I was treated as if I was seeking drugs for recreation, which has caused a massive distrust in our system.

  • Endometriosis takes everything away from you: your job, your friends, your spouse, your ability to think clearly, because the pain is too intense.

  • Endometriosis may have been the reason I had such difficulty becoming pregnant and the reason for my miscarriages. It stole the ability for me to have a biological child. On the other hand it gave me a powerful internal drive of advocacy and the passion to help others who are struggling with this disease, bringing some

  • I have done IVF that ended in a miscarriage. Our idea of multiple children or any at all seems like an unattainable dream. It's heartbreaking to think that we may not have a family of our own. However, I'm also afraid that if we have a daughter, I may pass down endometriosis to her, which is also terrifying.