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The Endometriosis Network Canada

@endonetwork_canada

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Registered charity in Canada dedicated to raising awareness of endometriosis and providing support and educational resources to those it affects.

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Invisible Disabilities Week: Let’s Talk About Endometriosis! 💛

It's not just a bad period. Period

Comment a 💛 to show support

#InvisibleDisabilitiesWeek #SeeTheInvisible #DisabilityInclusion #Endometriosis

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🇨🇦 Canada has the expertise. Now we need to organize it.

For too many Canadians living with complex endometriosis, accessing specialized surgical care remains a frustrating and exhausting journey.

Some patients are leaving Canada and paying tens of thousands of dollars privately to access the care they need.

We can do better. And we can do it within our publicly funded healthcare system.

Imagine a national network of Centres of Expertise for Endometriosis, bringing together high-volume, experienced surgical teams and interdisciplinary specialists to provide coordinated, evidence-based care.

The potential benefits are significant:

🔹 Better access to timely, specialized endometriosis care

🔹 Better outcomes through experienced, high-volume surgical teams

🔹 More efficient healthcare spending by reducing fragmented care, repeated consultations, and potentially avoidable procedures

🔹 Equitable access to expertise, regardless of where patients live

🔹 Training and research to build the next generation of Canadian expertise

Not every patient needs complex surgery. But those who do deserve access to the right team, with the right expertise, at the right time.

Centres of Excellence are not about creating a new private healthcare system. They are about making our existing PUBLIC system work better.

We have the talent, the infrastructure, and the clinical expertise across Canada. What we need now is the vision, coordination, and commitment to bring them together.

The time for change is NOW.

Patients should not have to leave their country or pay privately to receive complex, specialized endometriosis care.

Let’s build a system that works for patients, providers, and all Canadians. 🇨🇦

#Endometriosis #EndometriosisCare #CentresOfExcellence #WomensHealth #healthcareinnovation

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The right care. The right expertise. The right place. 🇨🇦

For too many Canadians living with endometriosis, finding the right surgical care is an exhausting journey of referrals, long wait times, and uncertainty.

What if we could change that?

Imagine a coordinated, Canada-wide patient navigation system that helps connect patients with the closest centre equipped with the expertise they need.

Not every patient requires complex surgery. But those who do deserve timely access to specialized, multidisciplinary care — regardless of where they live.

We have incredible expertise across Canada. The challenge is connecting patients to that expertise.

A national approach to patient navigation could help us:

🔹 Reduce unnecessary delays in care
🔹 Improve access to specialized surgical expertise
🔹 Support equitable care across provinces
🔹 Improve outcomes and quality of life

Patients shouldn’t have to navigate a fragmented healthcare system on their own.

It’s time to build better pathways to care, together.

What would a national endometriosis patient navigation system look like to you?

#Endometriosis #EndometriosisAwareness #WomensHealth #PatientNavigation

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Dear Diary, 💜

Let’s talk about the Canadian healthcare system, especially when it comes to women’s health.

Months waiting for a specialist. A 3–6 month surgery wait that turned into over a year. And just two days before surgery, another cancellation and delay.

Living with chronic pain is exhausting enough without constantly having to fight for answers and care.

Women’s pain deserves to be heard, taken seriously, and treated with urgency. 💜

Let’s open the conversation. Have you experienced similar struggles with our healthcare system? I’d love to hear your stories.🎗️

#EndometriosisAwareness #CanadianHealthcare #WomensHealthMatters #EndometriosisCanada #endodiaries

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On December 4th of 2024, I decided to have pelvis surgery to see how bad my PCOS was getting, because my symptoms were getting bad. I woke up December 4th, to the nurses saying “I’m glad you showed up when you did, there was some Endometriosis”. I did not want to hear this news because one chronic illness is enough!!!

May & June 2025, I got worse.
My bladder was out of control, I kept going to the bathroom, it hurt so much after going to the bathroom, kidneys were in pain (more on my right side), doctors told me that I had a bad UTI. I couldn’t eat, drink, stay still, I was so uncomfortable..I got out on antibiotics. Nothing worked. I went back to the hospital and got put on antibiotics but through IV. Nothing worked again. I got put on antibiotics again and nothing worked!! Me believing Endometriosis was on my uterus… I got told months later that it grew in my bladder, that’s why I was having issues. No infection was there to begin with. No UTI. Just Endometriosis!!! I went into complete shock, then I was confused and disappointed…
Why didn’t I get told that my Endometriosis was in my bladder during my four week check up from surgery??? My symptoms kept bothering me, even today it’s bothering me.

January 2026!!
No one should ever cry a doctor’s appointment. Ever. If you know me, I don’t like crying in public in front of other people. In the middle of January, I still wasn’t getting better!!! My doctor told me, “Your Endometriosis was never removed! It’s still there!” I went into shock again, then to being angry, confused, disappointed again, and lost for words. I did my best to keep it together but when my appointment ended and went to my car, I started bawling my eyes out in the hospital parking lot!!! I sat in my car with so many emotions and no idea what comes next!!

February 2026
Endometriosis sure did decide to bully me some more… I started to experience Bowel Endometriosis! Pain when taking a bowel movement and lots after, then after while it pain was acting up my bladder, ureters, kidneys, (more on the right side), during or after a bowel movement!! This can happen during a period of off your period. #endometriosis #endometriosiswarrior💛

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Dear Diary, 💜

Recovery after endometriosis surgery isn’t always easy, but it’s the little things that make a big difference. From comfortable clothing to pillows, gas relief, and everyday essentials, these are some of the things that have helped me through my recovery. 🌸

Everyone’s healing journey is different! What were your post-surgery must-haves? I’d love to hear your recommendations. 🤍🎗️

#EndometriosisAwareness #EndoRecovery #EndometriosisSurgery #EndoWarrior #endodiaries

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We need more awareness on endometriosis!!! Here’s the link to my paper let me know what you guys think

Handa Y. Endometriosis and infertility: mechanisms, clinical impact and diagnostic advances.
URNCST Journal. 2026 Oct 01: 10(10). https://urncst.com/index.php/urncst/article/view/1179

DOI Link: https://doi.org/10.26685/urncst.1179

#endometriosis #endometriosisawareness #research #publishing #awareness

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🚨 Introducing: EBL in Action

Change doesn’t just happen — it starts with people willing to create it.

We’re excited to launch EBL in Action, a new series spotlighting Emerging BIPOC Leaders who are advancing equity, diversity and inclusion in sport across Canada.

First up: Nawal Youssef 🎾

A Queen’s University varsity tennis athlete, student and advocate, Nawal is using both her voice and lived experience to help create more inclusive spaces for individuals with chronic illness and disabilities in sport.

From speaking on allyship and disability in athletics, to bringing The Endometriosis Network’s Run to End Endo to Kingston as Run Director, volunteering with RevvedUp, and helping her team earn an OUA silver medal — Nawal is showing what leadership in action looks like. 👏🏽

Her message is a powerful reminder that athletes living with chronic illness and disability are not alone — and that representation, awareness and belonging matter.

___

🚨 Présentation : LEP en Action

Le changement ne se fait pas tout seul : il commence par des personnes déterminées à le mettre en œuvre.

Nous sommes ravis de lancer « LEP en Action », une nouvelle série mettant en avant de jeunes leaders PANDC qui font progresser l’équité, la diversité et l’inclusion dans le sport à travers le Canada.

Pour commencer : Nawal Youssef 🎾

Joueuse de tennis universitaire à l’Université Queen’s, étudiante et militante, Nawal met à profit sa voix et son expérience personnelle pour contribuer à créer des espaces plus inclusifs pour les personnes atteintes de maladies chroniques et de handicaps dans le sport.

Qu’il s’agisse de s’exprimer sur le soutien aux personnes en situation de handicap dans le sport, d’organiser à Kingston la course « Run to End Endo » du réseau The Endometriosis Network en tant que directrice de course, de faire du bénévolat auprès de RevvedUp ou d’aider son équipe à remporter une médaille d’argent de l’OUA, Nawal incarne le leadership en action. 👏🏽

Son message rappelle avec force que les athlètes vivant avec une maladie chronique ou un handicap ne sont pas seuls — et que la représentation, la sensibilisation et le sentiment d’appartenance sont essentiels.

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I’ve had a lot of messages about this one, so here’s the full picture.

ENDO-205 is a non-hormonal drug designed to eliminate endometriosis lesions rather than suppress hormones. In March, the FDA cleared it to begin testing in humans. That’s real progress, and it’s a genuinely different approach.

It is not an approval. The first study will look at safety in healthy volunteers. After that, it still has to show it works in people with endometriosis, in larger trials, before the FDA or Health Canada would consider it.

I’m hopeful. I’m also not going to tell you it’s around the corner. If you’re struggling now, please don’t put your care on hold waiting for it. Talk to your care team about what’s available today.

Sources on the last slide.

#endometriosis #endo #pelvicpain #womenshealth #clinicaltrials

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🇨🇦 Why are Canadians leaving the country for endometriosis surgery?

Our newly published research in @jogc_social highlights a concerning reality: patients are travelling abroad to access specialized surgical care, often because of long wait times and concerns about access to expertise in 🇨🇦.

📊 Key findings, for those who were seeking or received care abroad:

* 80.5% were dissatisfied with their care in Canada.
* Nearly 90% of those who underwent surgery abroad were satisfied with their care.
* $31,500 CAD was the average total cost per patient for surgery abroad.

The message is clear: Access to timely, specialized endometriosis care matters.

We need improved referral pathways, greater access to multidisciplinary expertise, and better coordination of care.

Patients should not have to leave Canada or face substantial financial burdens to access the care they need.

Improving access to endometriosis care is not just a healthcare priority. It is an issue of equity.

🔗 Singh et al. JOGC, 2026.

#Endometriosis #WomensHealth #HealthEquity #EndometriosisAwareness #Gynecology

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we’re excited to announce our first AGM will be Wednesday, October 21st from 6-7:30pm! There will be snacks, goodies provided from the Endonetwork Canada, as well as volunteer opportunities and discussion for future plans for our society. We’d love to have you there to hear your suggestions, feedback and ideas for this coming year. Hope to see you there! #dalhousie #endometriosis #endocanada #dalu

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