About the Project

ENDO1000 for Trans & Non-Binary People

Welcome to the ENDO1000 project. We’re glad you’re here.

This project is the first of its kind looking at a whole-person approach to symptoms and possible treatments, and the links between them.

The project is inclusive of ALL who experience endometriosis, including transgender men and non-binary people with the condition.

We want our project to deliver results that are applicable to all who suffer from endometriosis, so that it can have a positive impact on the lives of as many people as possible.

In supporting inclusion of trans and non-binary people in this research we hope to set an example to future cohort studies like this to include all who experience endometriosis. We welcome any feedback to help improve trans inclusive research design and recruitment practices in this field for others in future, and will include what we learn in final publications.

Ambassadors

This project has a group of ambassadors to support our #TALKEndo campaign. We expect all of our ambassadors to be inclusive in a way that represents ALL who may experience endometriosis.  We acknowledge that right now it may not be safe for transgender, non-binary or gender non-conforming people to be a public ambassador. However, if you would be interested in being an ambassador, either as part of the main group, or in your own way, please reach out to us at endo1000@ed.ac.uk

Participation

We would also like your help in designing the data collection app for the study. We will be looking at how we use words and language, or what information people might want to share. If you would be willing to attend a focus group for this purpose, please let us know by contacting endo1000@ed.ac.uk.

If you would also like to share your experience of endometriosis, there will be an area on this page that we would welcome your words, named or anonymous – whichever you are most comfortable with!

Advocating for yourself with medical practitioners

Some advice from our friends at Waverly Care:

Know your rights!

  • It’s always helpful to know what you are entitled to on the NHS – Health rights in Scotland | NHS inform
  • You have protections against discrimination based on protected characteristic laid out in the Equality Act 2010 – Equality Act 2010. This still applies after the UK Supreme Court ruling in April 2025.

Bring a friend

  • If you have a trusted friend, partner, or family member with you for support
  • You can also bring items for comfort, particularly if you will be having a physical examination. You can bring a blanket, cuddly toy, headphones for music, etc.

Prepare

  • Write down a list of questions
  • Think about what you want to get out of the appointment

Think about any concerns you have, and voice them at the start of your appointment

Sharing our findings

We would like to share the results of this study in a way that will be most useful and impactful for various communities. If you have any ideas of how we can do that, please let us know!