Share your endometriosis story
Share your endometriosis story
EndoAct’s goal is to drive policy action on endometriosis in Canada. By bringing together people living with endometriosis, health care professionals, and researchers, we represent Pan-Canadian expertise on endometriosis. Together, we are raising awareness about the problems faced by the endometriosis community and solutions to ensure that everyone in Canada who has this condition gets the right care, in the right place at the right time.
There are more than
0
people with endometriosis living in Canada
People in Canada wait
0 years
on average for a diagnosis
It can take up to
0 months
to get surgical care in Canada
Endometriosis costs Canada
$0
every year
Endometriosis Stories
People from coast to coast to coast are sharing what it is like to live with endometriosis in Canada. Read and learn more about their journeys here.
When you go to emerg due to the excruciating pain & they send you home it is so discouraging that it causes some depression.
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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.
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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 frustration, but from the validation and hope I felt.
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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 terrifying.
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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.
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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.
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Endometriosis takes everything away from you: your job, your friends, your spouse, your ability to think clearly, because the pain is too intense.
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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 purpose from the pain.
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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.
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Tell your endometriosis story
By bringing together stories, we can help other people in Canada, including elected officials and policymakers, understand the impact of endometriosis across the country.