Endometriosis: understanding how sufferers describe pain could lead to faster diagnosis

Though endometriosis affects an estimated one in ten women of reproductive age, most women with the condition visit a GP over ten times before being referred to specialist care for a diagnosis. This can mean an average wait of eight years to receive a diagnosis. Given the chronic pelvic pain that endometriosis causes – which can sometimes be incapacitating – this delay can severely impact suferrers’ physical, social and mental health.

While a key cause of this delay is the dismissal and normalisation of women’s pain, another cause may be the challenge of adequately communicating how it feels – which is something our latest study explored.

We found that both women and doctors find current tools for communicating endometriosis pain inadequate. We also found that some of the language women used to articulate their pain wasn’t recognised by GPs. This miscommunication could mean many women aren’t getting the diagnosis or treatment they need – or may be waiting longer than necessary for it.

To conduct our study, we first surveyed 131 women with endometriosis. We asked them about the difficulties they faced talking about their pain with doctors prior to being diagnosed, and how they describe their pain.

Many women reported that the numeric rating scales (zero being no pain and severe pain being a ten) commonly used in consultation didn’t accurately capture the severity and impact of their pain on their day-to-day lives. Some expressed the need for linguistic or visual tools, with one participant stating: “I did not associate what I was feeling as ‘pain.’ I needed to see a list of feelings … like burning, dragging, squeezing.”

Women also reported feeling unheard when they tried to describe their symptoms in consultations. They often felt rushed or discouraged from talking, and some felt intimidated. This not only posed challenges for effectively communicating their pain to their GP, it also made women feel their pain was being dismissed. Research shows that this kind of invalidation by health professionals is associated with lower self-esteem and depression in patients with endometriosis.

Our research also revealed that many women use metaphors and similes to describe their pain. The most common metaphors were those that invoke violence. For example, a recurrent metaphor women used to describe their pain was “as if somebody is repeatedly stabbing me with a large knife”.

Other common metaphors compared pain to heat – “like having a hot poker planted inside your stomach” – or pressure, describing it as having “a balloon inside me pushing on everything”. While these metaphorical expressions aren’t typically used by GPs to diagnose endometriosis, the language still gives a good indication of the type and intensity of the pain being experienced.

We also conducted interviews with 11 GPs, asking how they assess suspected endometriosis pain and how their patients talk about such symptoms. We then presented them with the metaphors that women commonly used to describe their endometriosis pain.

Three of the GPs we spoke to reported they wouldn’t initially suspect endometriosis if women used these common metaphors and similes. Some of the expressions such as those including or suggesting words like stabbing or burning were also more likely to make the GPs suspect nerve pain or an infection rather than endometriosis, which they would want to investigate first. One GP also said that they would associate “more of crampy type pain” with endometriosis, as opposed to the words women used to describe their sensations.

While most GPs reported using the numeric rating scales in their diagnoses, many also felt it was an insufficient tool for assessing pain on its own. Instead, they reported using the scale along with questions about how the pain impacts a patient’s life, as well as the location, frequency, duration and quality of the pain.

Most of the GPs, however, did identify these metaphors as indicative of possible endometriosis – even recognising them as ones they often hear from patients with the condition. Some GPs also found use of metaphors and similes helpful in their investigations – even saying it can help patients describe their symptoms when they’re struggling to find the words.

Describing pain

Research with UK GPs has also shown that endometriosis is challenging to diagnose because symptoms resemble those of other conditions they seek to rule out first. We know that when physicians use metaphors, it can improve communication with seriously ill patients. And other research shows that when healthcare providers know the common metaphors used by chronic pain sufferers, it can make them less likely to dismiss or misunderstand a patient’s symptoms.

This is why improving GPs’ knowledge of pain metaphors commonly used by women with endometriosis could increase the likelihood that their pain will be understood and believed, which is central to improving diagnostic times.

Our study shows that new and different ways of communicating endometriosis pain to doctors is needed to improve how quickly a patient is diagnosed. Metaphor, simile and other creative ways of communicating might be one way of doing this, as shown by our research.

Pain is subjective. This is why communicating endometriosis pain is such a challenge. We know from our research and other studies that metaphors and similes are a useful tool for pain sufferers in describing these internal experiences. The key now will be making sure GPs know how to recognise the common language women use to communicate their endometriosis pain so more can benefit from a diagnosis.

The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.