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.
I really want a baby and the excision doctor says an excision might mean I can get pregnant. I’m so close to 40 and I’m worried about the wait. I mean it’s a pandemic so I have to wait it out, but being on the list is hope.
Read more
My suffering robs me of entire days. I ache so deep inside it feels as if my bones are broken and the jagged pieces will soon stick out through my skin. My skin crawls and burns as if I have been dragged across a course wool carpet. My brain is foggy and frustrating.
Read more
I suppose though, more than anything, I just want this to be recognized or heard and normalized, not a back door conversation, something to hide or be ashamed of. I think just general education of the public would help people to understand what is or is not normal, and be more comfortable talking about it with their doctor, or even just their peers.
Read more
I struggled with depression during that time, largely related to the lack of sleep. I just couldn't function. I felt like no one was helping me and no one cared about the pain. My family didn't know how to help me and they were scared too. I had no intimacy with my husband at all as I was always in pain.
Read more
Prior to surgery I would constantly miss work, I couldn’t exercise, I quit sports, I cancelled dates and plans with friends weekly. I often would spend entire weekends on my couch unable to move. It was very depressing, and you feel very alone and isolated. For a while I just stopped making plans knowing the day of I would have to bail and being scared that no one would understand or invite me out again.
Read more
The worst part is grieving your past self. Not knowing if you’ll ever be the person you once were. Not knowing who you are now. It’s hard. It affects your sleep. It affects your relationships. It affects your sexual health and activities. It affects your self esteem.
Read more
Over the past 7 years, I’ve seen over 20 different doctors and specialists and no one was ever able to properly diagnose or treat me. Myself and my family have spent tens of thousands of dollars in alternative treatments to try and get me well.
Read more
When you go to emerg due to the excruciating pain & they send you home it is so discouraging that it causes some depression.
Read more
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.
Read more
Stay in the loop
Join the community
Subscribe to our newsletter to be a part of the community taking action on endometriosis in Canada. We will send you updates about our successes and new ways that we can all come together to advocate for the right care, in the right place at the right time.
Share EndoAct
Spread the word
Share our website on your social media so that everyone can join us to take action on endometriosis. We want everyone living with endometriosis in Canada to know that their voice can be heard. Let your followers know about EndoAct!
Get the word out! Share our site on:
Raise your voice
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.