Solve miscommunication between doctors and endometriosis patients to fix diagnosis delays

Endometriosis is a debilitating condition which affects 1.5 million women in the UK

A language toolkit for doctors that helps them recognise the severe pain articulated by women as symptoms of the chronic gynaecological condition endometriosis should be developed, new research demonstrates.

Women with endometriosis – a debilitating condition which affects 1.5 million women in the UK – face an average delay of over seven years before they are correctly diagnosed, in part due to their descriptions of symptoms being routinely dismissed as normal period pain, a study led by Manchester Metropolitan University shows.

Even when they use powerful metaphor and imagery – one participant described her pain as feeling “like I’m being stabbed by a thousand tiny men” – they still struggle to achieve a correct diagnosis.

Dr Stella Bullo, Senior Lecturer in Linguistics at Manchester Metropolitan University, analysed the questionnaire responses of  women with endometriosis about their experiences of medical consultations.  

The study has been published in the journal 'Health: an interdisciplinary journal for the social study of health,​ illness and medicine'. 

Painful condition

Endometriosis is a condition whereby tissue behaves like the lining of the womb and grows in other parts of the body. It can cause painful or heavy periods and may also lead to infertility, chronic fatigue, bowel and bladder problems.

Dr Bullo, who has endometriosis herself, said: “Describing pain where an injury can be seen is difficult at the best of times, describing incapacitating pain that is invisible and linked to a natural process is extremely complex.

“Endometriosis is a very complex condition both to accurately describe and to diagnose, so we need collaborative work between linguistics, doctors and women who live with this condition to devise tools to help both women and doctors tackle endometriosis pain.“

The overwhelming majority of survey respondents found it difficult to adequately describe the extent of the pain they were suffering (85%), felt that they were not believed by doctors (89%), and that they would have benefited from different tools to help them describe their symptoms (84%).

Those groups all had higher average diagnosis times than those who disagreed with those statements – indicating that communication barriers may indeed contribute to diagnosis delay.

Dr Bullo’s linguistic analysis of the language that women used to describe their pain demonstrates that they use metaphorical pain descriptors – common when patients are describing an undiagnosed or invisible illness but prone to misinterpretation – using themes such as physical damage (“it’s like someone putting a knitting needle through front to back”), the physical properties of elements (“it feels as though I have a ball blown up inside my stomach”) or transformative force (“it feels like I have become possessed by pain”).

Endometriosis is a very complex condition both to accurately describe and to diagnose, so we need collaborative work between linguistics, doctors and women who live with this condition to devise tools to help both women and doctors tackle endometriosis pain.

They use such exaggerated language in an attempt to explain the severity of their pain – but it still does not seem to be taken seriously.

Dr Bullo added: “Successful communication relies on the recognition and use of a shared code, so a mismatch in assumptions can give rise to miscommunication”.

“The use of metaphorical language, often a necessity, increases risks of this miscommunication, and therefore medical professionals being able to provide the most appropriate care to patients in fear and need.”

'Pain toolbox'

Dr Bullo proposes that linguists, doctors and women with the condition devise a mutually agreed upon ‘pain toolbox’, which would aid communication and improve diagnosis times. This could be made available to medical professionals, as well as teachers and the media.

Such a toolbox, which could include information on language choices, images and gestures, would help doctors if, for example, a patient described a ‘stabbing’ sensation – which may represent their intensity, depth and abruptness of pain. Likewise, a patient “feeling as though I have a ball blown up inside my stomach” relates to a feeling of volume and pressure.

These different types of metaphor could be matched to different accepted medical types of pain, such as ‘nonciceptive’, referring to pain relating to damaged body tissue, or ‘neuropathic’, referring to nerve damage, and whether it is constant pain or relating to a specific act.

Dr Bullo is currently working on such a toolkit as part of her ongoing Language of Endometriosis research project, the first known study to analyse the language that women with endometriosis use to speak about their condition in an attempt to boost communication and decrease diagnosis times.