Why Lived Experience Matters in Endometriosis Care: Stories That Moved the World Congress in Sydney

On Thursday the 22nd of May in Sydney, Anna and Alyssa had the honour of being keynote speakers at the Matilda x Gedeon Richter evening event. It was an incredibly powerful and emotional night, where they stood in front of over 100 clinicians, researchers, and lived experience advocates to share their stories – journeys that have been deeply personal, painful, and at times, invisible.

Alyssa’s Story:

I spoke about my journey living with persistent pelvic pain and symptoms that strongly align with endometriosis – but without a formal diagnosis, even after undergoing a laparoscopy. I shared how my symptoms began young, and how, at just 11 years old, I had my healthy appendix removed because no one could figure out the cause of my pain. My story is filled with dismissal, frustration, and trauma – particularly after learning, years later, that my laparoscopic report from age 18 described a “normal appendix,” despite it having been removed seven years earlier. That moment, when I told the room what I’d discovered, was met with an audible gasp – a collective recognition of how wrong and unjust that was. It reminded me that what I went through really was as hard as it felt. In that moment, I let myself feel the weight of it all. I cried. Thankfully, I wasn’t alone – many in the audience cried with me. Their compassion and solidarity held me in a way I’ll never forget. Despite the emotional weight of the evening, I walked away feeling more accepted, seen, and supported than I ever have in a space like this. As someone who lives with persistent pelvic pain and suspected endometriosis, but doesn’t have a formal diagnosis, I often struggle with imposter syndrome. There are days when I feel like I don’t belong in endometriosis advocacy spaces. Like I haven’t earned the right to speak because I don’t have the “proof” a diagnosis would give. But that night changed something for me. The way people embraced me – clinicians, researchers, and fellow advocates – showed me that my story does matter. That I do belong here. And that lived experience, in all its forms, deserves to be heard and honoured.

Anna’s Story:

My story is different but offers another view into the experience of living undiagnosed for years. In some ways, mine felt like the “happier” ending – though calling a diagnosis for an incurable condition a happy one is complicated. For me, it was validating. It took nearly a decade to get there, filled with pain, confusion, and repeated dismissal. I spoke about how deeply unsupported I felt – especially by the medical system. The fear of hospital visits, the impact on my mental health, the loneliness. It was only my family and close friends who truly believed me, when so many specialists didn’t. That treatment – or lack of it – changed how I lived. It shaped my confidence, my choices, and how I saw myself. Sharing that with a room of clinicians who actually listened was incredibly moving. I could see they cared. They wanted to do better. It reminded me that most health professionals are trying, even within a flawed system. I also spoke about what came after my diagnosis – the next uphill battle. The endless need to explain myself, to debunk myths, to justify the legitimacy of my pain. No, pregnancy won’t cure me. Yes, everyone’s endo looks different. But despite all of that – I’ve found a way to live a full, mostly functional, happy life. I’m at peace with my journey now and being able to share it with such a warm and thoughtful audience meant more than I can say.

Together…

We were both so overwhelmed by the kindness and passion of the people who showed up that evening. It had been a long day of conferencing, it was raining, and honestly – it would’ve been easy not to come. But over 100 people did. Their presence, their engagement, their gratitude – it meant the world to us. After our fireside chat, clinicians came up to ask what we wished we’d had at different points in our journeys. Some even apologised on behalf of the GPs or specialists who had wronged us. These weren’t just polite conversations – these were passionate professionals determined to do better. That moved us more than we can express.

We even had lived experience advocates from the UK and Poland approach us, thanking us for sharing our stories. Knowing that our words reached people across the world still feels surreal and incredibly humbling. This event reminded us why advocacy matters. Why stories like ours need to be heard. And why creating space for all experiences – diagnosed or not – is essential to improving care. We left feeling lighter, more grounded, and more hopeful than we’ve felt in a long time.

To everyone who attended, who listened, who showed up with empathy: thank you. Together, we’re making space for stories like ours – and countless others – to be heard, validated, and believed.

Anna and Alyssa x

Anna and Alyssa stand together at the Matilda stand, showing that lived experience should be at the center of all scientific events.