About Endopaedia
Who's behind this project
A bit about me
Welcome to Endopaedia – your platform for reliable, structured knowledge about endometriosis.
My name is Dora. I live with endometriosis myself, and for over two decades my life was shaped by chronic, hard-to-interpret pain and medical gaslighting. In 2022, despite only a suspected diagnosis, I underwent a diagnostic laparoscopy, a procedure that remains the current standard in endometriosis diagnostics. This experience profoundly shaped my understanding of the condition, current medical practice, and the gaps in available knowledge. My background is in pharmacy, and I currently work in science communications and operations at an AI-supported techbio company. Reading primary research is second nature to me, and I have a tendency to go very deep into topics I care about — healthcare has always been at the top of that list.
I was production lead and music supervisor on nicht die regel, the first German-language feature documentary on endometriosis, and have contributed to primary pain research in the field, with publication pending.
I created Endopaedia to bring order and clarity to the multitude of studies, information, and perspectives on endometriosis. The goal is to present well-founded knowledge in a clear, accessible way, and to highlight connections that may not seem obvious at first glance.
Researchers and medical professionals, as well as patients are welcome to explore this platform to gain new insights.
Endopaedia is driven by my belief that knowledge can be empowering, and that navigating endo on a daily basis already robs us of enough time, so we shouldn’t lose even more by piecing studies together ourselves. I’m glad you’ve found your way here :)
Current Developments
Fortunately, a lot is now happening internationally in endometriosis research. Non-hormonal treatment options are slowly gaining momentum, although there are currently no approved new medications as alternatives to hormonal therapy (the pill).
This website is continuously updated. If you want to stay informed about current developments and gain access to exclusive material, sign up for the Endopaedia News!
Our own research: The data collection for our pain study has ended (March 2025) - thank you all for your participation! As soon as the analysis is published, you'll find out here.
Mission Statement
Endopaedia is an independent educational platform. I am not affiliated with any doctor, clinic, or pharmaceutical company. The goal is to provide accessible, science-based information about endometriosis to those affected and their loved ones, as well as researchers. All content is written and reviewed personally, based on current peer-reviewed research, and updated as the field evolves.
Congrats, You Got Endo!
A short, smart, and slightly sarcastic survival guide
Part practical toolkit, part emotional backup. Written by someone who's been there.
What is Endo?
Current knowledge about this complex condition
Diagnosis
Reflections on the diagnostic journey