Inside Endometriosis Canada: How One Group Is Supporting Thousands of Canadians on Facebook
Earlier this year, I had the pleasure of meeting Violeta Kondovski, the powerhouse behind Endometriosis Canada, a not-for-profit organization that’s making a difference for the 1 in 10 people in Canada living with endometriosis through their facebook and other initiatives.
Violeta runs the Endometriosis Canada Facebook group, a thriving community of over 8,000 Canadians looking for support, answers and connection. It’s a space where you’re reminded that you’re not alone. Something that’s especially important when you’re navigating a disease that’s so often misunderstood.
A Live Stream You Don’t Want to Miss
Not long after we connected, I had the incredible opportunity to join Violeta on a live awareness stream alongside two renowned endometriosis specialists Dr. Andrea Vidali and Dr. Mathew Leonardi. We talked openly about the patient experience, the delays in diagnosis, and how patients and providers alike can take action to improve care.
Who Is Endometriosis Canada FB group?
If you’re unfamiliar, Endometriosis Canada is a grassroots-driven, patient-led organization that’s been working since 2015 to support, educate, and advocate for Canadians living with endometriosis.
What makes them so special is that they’re led by people who get it… people who have walked this path themselves and understand the real challenges that come with this condition. From hosting virtual support groups and launching advocacy campaigns, to leading educational events and working to influence policy change, Endometriosis Canada is doing the important work of pushing for better, more equitable care across the country.
Why Endometriosis Canada support and advocacy matters
Endometriosis is more than just “bad periods.” It’s a chronic, inflammatory condition that can affect multiple organs, cause infertility and lead to debilitating pain. The average diagnosis delay is 5 to 10 years, and access to care is still a huge barrier! Especially for those outside major cities.
That’s where Endometriosis Canada steps in.
From sending care packages to finding local specialists and hosting community events on topics like fertility, menopause, and pediatric endo, they’re showing up in every way they can.
Recent advocacy highlights:
Here are just a few of the inspiring initiatives they’ve launched:
- Our Daughters Matter Campaign: Advocating for early diagnosis and youth care.
- Youth Education Programs: Working on period-positive, endo-aware curriculum for schools.
- Medical Training Outreach: Delivering pamphlets, posters, and tools to healthcare providers.
- Support Groups: Safe spaces for peer-led conversations and emotional connection.
- Endometriosis Awareness Month Initiatives: Campaigning for formal recognition and increased government support.
Violeta’s Story and Mission
Violeta’s drive to create Endometriosis Canada came from personal experience. Like many of us, she felt isolated after her diagnosis and was shocked at the lack of education, understanding, and support available… even from well-meaning friends and family.
Her goal? To make sure no Canadian with endometriosis ever feels that alone again.
“As much as your family and friends love you, they simply don’t understand the extent of what it means to live with endometriosis.”
How You Can Get Involved
There are so many ways to help move this mission forward:
- Join a virtual support group
- Share your story to raise awareness
- Volunteer your time
- Donate if you’re ableConnect with Violeta : endofight4cure@gmail.com
If you’re looking to discover more inspiring endometriosis advocacy happening across Canada, be sure to check out this post where endometriosis events discusses systemic racism in endometriosis care. This Black women-owned group is doing powerful work in education, awareness and support which is creating inclusive spaces and amplifying diverse voices in the endo community. Their mission and initiatives are a must-know for anyone passionate about equitable healthcare and representation in pelvic health advocacy.
