Endo Blog

Patient voice loud and clear for endometriosis research
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Patient voice loud and clear for endometriosis research

Endometriosis research is changing. Endo researchers agree the patient voice is a very important factor. So instead of taking lots of measurements (like bloods tests or scans), researchers have become increasingly interested in asking people about their symptoms and how their symptoms affect them.

Not everyone with endometriosis will experience the same symptoms or in the same way – it’s different for everyone. This makes it hard for both patients and doctors to assess and manage.

Endometriosis research trials

Asking people about how they ‘feel’ helps us to know if the treatments or management strategies that we research are actually helping people. Information about symptoms and a patient’s experience is usually collected by questionnaires or surveys.

The ‘most bothersome symptom’

A group of doctors, researchers, and people living with endometriosis recently met to make recommendations for future endometriosis research. They suggested patients should be asked about their most bothersome symptom.

Each patient chooses their symptom and researchers will track that symptom during the study to see if their treatment actually helps. This allows the assessment to be tailored for each person. Did it improve that specific symptom the most? It’s an exciting way to do research and lets the patient stay in control.

This has never been done before, so a new questionnaire needs to be created and tested to make sure it works.

Is bothersome the right word? Probably not!

We found the word ‘bothersome’ doesn’t fully capture how intense endometriosis symptoms really are and how much they can impact people’s lives.

Some endometriosis patients gave us feedback and said that the word ‘bother’ gave the impression that endometriosis is just ‘annoying’. But symptoms of endometriosis can be severe and have the potential to cause great disruption to everyday life. They suggested we should ask about the endometriosis symptom that impacts someone the most.

So that’s what we’re doing!

What’s next and how can I get involved?

A team at the University of Melbourne will be running several studies over the next few years to help develop the new questionnaire. To get involved in this exciting research study, please contact Alice Mitchell (PhD Candidate) at ammitchell@student.unimelb.edu.au.

We’d love to have you on board.

Written by:
Alice Mitchell and Dr Sarah Lensen


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Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.