Most women with the condition visit a GP over ten times before being referred to a specialist for a diagnosis.
It can take an average of eight years to get a diagnosis. This delay can have a severe impact on sufferers' physical, social and mental health.
The main cause of this delay is the dismissal and normalized of women's pain, but another cause is the challenge of adequately communicating how it feels.
Current tools for communicating pain are inadequate. Some of the language women used to articulate their pain was not recognized by the doctors. Many women may not be getting the diagnosis or treatment they need because of this miscommunication.
131 women were surveyed for our study. We asked them how they were able to talk about their pain with their doctors, and how they described it.
Many women reported that the scales used in consultation didn't capture the severity of their pain on their day-to-day lives. One participant stated that they did not associate what they were feeling with pain. I need to see a list of feelings.
When women tried to describe their symptoms in consultations, they felt unheard. They felt rushed or discouraged from talking. This made women feel their pain was being downplayed, and posed challenges for communicating their pain to their GP. This kind of invalidation by health professionals is associated with lower self-esteem and depression in patients with endometriosis.
Many women use metaphors and similes to describe their pain. The metaphors that invoke violence were the most common. Women used to describe their pain as if someone was stabbing them with a large knife.
Pain is likened to having a hot poker planted inside your stomach, while pressure is described as having a balloon inside me pushing on everything. The language used to describe the pain is still useful in showing the type and intensity of the pain being experienced.
Interviews were conducted with 11 general practitioners, asking how they assess suspected endometriosis pain and how their patients talk about it. We showed them the metaphors that women used to describe their pain.
Three of the doctors we spoke to said they wouldn't initially suspect endometriosis if women used these metaphors. Some of the expressions, such as "burning" or "sabbing", were more likely to make the GP suspect an STD, rather than a nerve pain, which they would want to investigate first.
One GP said that they would associate more of achy type pain with endometriosis, as opposed to the words women used to describe their sensations.
Many felt that the scales were not enough for assessing pain on their own. They used the scale along with questions about how the pain impacts a patient's life, as well as the location, duration and quality of the pain.
Most of the doctors identified these metaphors as indicative of possible endometriosis, even recognizing them from patients with the condition. When patients are struggling to find the words, metaphors and similes can be helpful in their investigations.
Describing pain.
Research shows that it's difficult to diagnose endometriosis because it resembles other conditions that they try to rule out first. We know that metaphors can improve communication with seriously ill patients. According to research, healthcare providers are less likely to dismiss or misunderstand chronic pain sufferers' symptoms if they know the common metaphors used.
Improving the knowledge of pain metaphors 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 pain to doctors is needed to improve diagnosis. Our research shows that metaphors, similes and other creative ways of communicating might be one way of doing this.
It's not a good thing that pain is subjective. It is difficult to communicate endometriosis pain. Our research shows that metaphors and similes are useful for pain sufferers to describe their internal experiences. The key is to make sure that doctors know how to recognize the common language that women use to communicate their pain.
Annalise Weckesser is a Senior Research Fellow in Medical Anthropology at Birmingham City University.
The Conversation's article is a Creative Commons licensed one. The original article can be found here.
