What to Ask at the Endometriosis World Congress (Even If You're Not a Clinician).
A gentle guide for patients, advocates, and non-researchers attending medical conferences
Attending a medical or scientific conference as a person with lived experience — rather than a clinician or researcher — can feel a bit like walking into a room where everyone speaks another language. Acronyms are everywhere, research posters are packed with data, and presentations move quickly, without a lot of explaining the background.
But your voice matters deeply here. In fact, your presence is a powerful reminder of why these events exist in the first place: to improve the lives of people living with endometriosis.
At Matilda, we believe lived experience belongs in every room where decisions about care are made (shout out to our incredible co-designers). So whether you’re attending the World Congress on Endometriosis (WCE) for advocacy, curiosity, or connection, here’s a gentle guide to help you engage with confidence — and a few ideas of what to ask.
🧠 First things first: you don’t need a PhD to ask a great question.
You are the expert in your own body, your story, and your experiences — and your questions are just as valid as those coming from clinicians and academics.
The best questions don’t always come from the person who is deep in the weeds of the science. They often come from the person who sees how that science translates to real life.
🤔 What kinds of questions can I ask?
Here are some types of questions that are absolutely welcome — and helpful — at a congress like WCE (tip- save these on your phone so you have some go-to’s):
1. "How could this research change patient care?"
➡ Helps clarify what the findings actually mean in practice
➡ Opens discussion around real-world application
Example: “This looks like a promising new way to diagnose endometriosis — do you see it being available in public health settings anytime soon?”
Example: “I see that you have explained the benefit of supporting people with endometriosis with nutritional advice, but who actually provides that advice in the real world, and where can I find someone who is specialised?”
2. "What were the people in the study like?"
➡ Shines light on whether findings apply to diverse populations
➡ Encourages inclusivity in research design
Example: “Did this study include people from rural areas, or people with co-existing conditions like IBS or fibromyalgia?”
3. "How can patients or the public get involved?"
➡ Encourages co-design and partnership
➡ Helps bridge the gap between researchers and real lives
Example: “Is there a way people with lived experience can help shape your next project?”
4. "Were there any surprises or challenges in your findings?"
➡ Makes room for honesty and learning
➡ Validates the complexity of working with real-world health issues
Example: “Were there any unexpected responses from participants that changed how you looked at the data?”
5. "How do you hope this work will be used?"
➡ Grounds research in purpose
➡ Encourages a forward-thinking, impact-driven mindset
Example: “What’s the next step to getting this into clinical guidelines or into the broader health care setting?”
💡 Some tips if you feel nervous about asking a question:
Write it down beforehand. That way, you don’t have to rely on memory.
Practice saying it out loud. It often helps settle nerves.
Start with something kind. A quick “Thank you for your presentation” can help you feel more grounded and connected.
Remember you’re not alone. Many other attendees will be grateful you asked a question they were too shy to raise.
If you have the option, take a friend. Sometimes having someone on your team next to you, can help build your confidence to ask.
🌱 Final thoughts:
Medical congresses are changing — and spaces like WCE are increasingly welcoming people with lived experience. Your presence, your insights, and yes, your questions, help ensure that care continues to evolve in a way that is evidence-based, compassionate, and human.
So whether you ask a question from the mic, during a coffee break, or quietly after a session — know that you belong in this space.