Extreme pain endured by women with endometriosis often dismissed

'The Language of Endometriosis' project aims to improve communication between doctors and patients

Language of Endometriosis logo

Endometriosis is a chronic and debilitating condition that affects around 1.5 million women in the UK

Despite describing the intense pain of endometriosis in terms such as “like a T-Rex has been unleashed on my insides”, women face long delays in diagnosis as their complaints are routinely dismissed by doctors, new research reveals.

The Language of Endometriosis research project at Manchester Metropolitan University is the first known study to analyse the language that women with endometriosis use to talk both about their experiences of living with the condition and their experiences of trying to access diagnostic treatment.

It aims to improve communication between doctors and patients who suffer with the often incapacitating gynecological condition, to contribute to efforts to improve diagnosis times – on average seven to eight years – and alleviate the physical and mental distress of women with endometriosis.

Debilitating condition

Endometriosis is a chronic and debilitating condition that affects around 1.5 million women in the UK, and involves tissue that behaves like the lining of the womb growing 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.

The findings, published in the Discourse and Communication journal, are the result of interviews with 21 women with endometriosis and an analysis of posts from online support message boards.

They reveal how their symptoms are often dismissed as simply normal period pain even when they use the most extreme language to describe the pain.

One participant described the condition “as if someone was wringing my womb out like a dish rag”, while another said it was “like a T-Rex has been unleashed on my insides.” Others used terms associated with war – describing how they “fought” or “battled” to gain a diagnosis. Other women expressed how they found it difficult to find the words to articulate their pain to doctors.

One participant described the condition “as if someone was wringing my womb out like a dish rag”, while another said it was “like a T-Rex has been unleashed on my insides."

Dr Stella Bullo, Senior Lecturer in Linguistics at Manchester Metropolitan University, and lead researcher on the Language of Endometriosis project, who has endometriosis herself, said: “The findings demonstrate how little knowledge there is of the condition and how much damage it does to the body and the lives of women who live with it.

“The incredible response to my call for volunteers and the willingness of women to participate and help with the research is testament to how unheard and alienated they feel.

“My aim is to continue working towards finding ways to improve communication practices around endometriosis.” 

On average, it takes between seven and eight years for women with endometriosis to be diagnosed. The National Institute for Health and Care Excellence (NICE) issued guidance to doctors in 2017 in how to correctly recognise the condition.

Embarrassment and isolation

Dr Bullo’s research revealed how a lack of knowledge about the condition means that women living with endometriosis are unaware how common it is, are unable to discuss it openly with friends and family for fear of being embarrassed, and therefore more likely to feel disempowered and isolated.  

One participant described how “I feel like I am not a proper woman”, and another how “I was a bit repulsed by myself for a time”.

The findings of the project demonstrate that women feel empowered when they have the linguistic tools to help them describe and document their symptoms.

Dr Bullo said: “Therefore, the most important issue raised by this work is questioning how women acquire the empowering knowledge of an illness they do not know - or cannot be certain they have - because it is linked to a natural female process and diagnostic treatments are difficult to access or simply unknown.

“The longer term aim of the project is to understand what the best way is to describe pain, given that the word pain alone and its usual qualifiers such as ‘severe’, fall a long way short in getting doctors to appreciate the magnitude of the pain and symptoms of the disease.”

The most important issue raised by this work is questioning how women acquire the empowering knowledge of an illness they do not know - or cannot be certain they have - because it is linked to a natural female process and diagnostic treatments are difficult to access or simply unknown

The Language of Endometriosis project will now focus on developing a linguistic toolkit for doctors and patients that allows a mutually understood description of symptoms.

Dr Bullo also aims to begin work with young girls in schools to help them articulate the difference between ‘normal’ period pain and something more serious.

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