Do words matter when you’re a woman with pelvic pain talking to your clinician?

How do you describe a pain like dysmenorrhea, or painful sex, or vulval pain, or the pain of endometriosis, to someone who has never experienced these things, and possibly never will?

Around 20% of women suffer from persistent pelvic pain, and their symptoms can be a confusing mix of period pain, pelvic muscle spasms, bowel symptoms, bladder symptoms, vulvar burning, pain with sex, nausea, dizziness, headache, fatigue, poor sleep, anxiety, low mood, back pain, pain with movement, and much more. Many of these symptoms happen together, making a complex soup. There is a great deal of potential for confusion on both sides of the consultation desk! Add a big dose of embarrassment, stigma, hormonal variation, cultural attitudes and short consultation times, and communication suffers. Yep! Pelvic Pain has it all.

Where does a caring health professional start? What do those ‘stabbing pains’ mean?

Does this sound exaggerated? Who knows? We need to know.

Ms Eleanor Schofield (Med V, University of Adelaide), Dr Susan Evans (Gynecologist) and Professor Roly Sussex (Professor of Applied Language Studies) are venturing boldly into the abyss, aiming to bridge the gap between patients and health professionals with a study on Pelvic Pain Language. They’re keen to hear it all, at length, exactly how women feel it, what it means to them, and how it affects their life – even the embarrassing bits.

And this is where they need your help.

Ellie, Susan and Roly are looking for women over 18 from Australia and New Zealand who are ready to take their survey and tell it all. They hope to find women who will use their own words – lots of them – to describe their pain experiences and how pain has affected them. They will analyse and link all this pain talk to the experience of pain, to find commonalities in language when we talk about pain.

This study has important implications for all kinds of health professionals. And wouldn’t we all like to understand our patients better? Wouldn’t they love to use their words and know that we understood and recognised what they meant?

So, they need some volunteers to tell all!

You, a friend, or any women over 18 in Australia or New Zealand can click on the link below to complete the Language of Pelvic Pain in Women survey.

The more words provided, the more data to analyse, the more pain language excitement!

Who are these people?

Ms Eleanor Schofield is currently undertaking her 5th year of medicine at the University of Adelaide. She has a keen interest in gynaecology and persistent pain.

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Dr Susan Evans is a gynaecologist and specialist pain medicine physician who specialises in persistent pelvic pain. She is Chair of the Pelvic Pain Foundation of Australia and a current PhD Candidate at the University of Adelaide.

Professor Roly Sussex is an applied linguist from the University of Queensland, and ABC presenter for over 20 years, with a special research interest in pain language.