Diagnostic delay in endometriosis is confirmed - but why?

A qualitative study has now been published describing women’s experiences of reaching a diagnosis of endometriosis. The authors call for more awareness of endometriosis to reduce an 8.5 year diagnostic delay.

This paper, by Karen Ballard and colleagues [1], reports the findings of an interview-based study, where they set out to investigate women’s experiences of endometriosis, and in particular, the events that lead to a diagnosis of endometriosis.

Women attending a pelvic pain clinic were invited to take part in the study, which involved having an in-depth discussion with the researcher about their experiences of endometriosis. The discussions lasted between one and two hours and were audio taped and then transcribed to allow the researcher to look for common patterns as well as unusual occurrences in women’s experiences.

The study confirmed the findings of others, showing that there continues to be a delayed diagnosis of endometriosis of around 8 ½ years. Four key reasons for the delayed diagnosis were identified:

1: Women thought symptoms were normal

Women often delayed reporting their symptoms to the doctor because they considered them to be ‘normal’. Although their periods were problematic, and often disruptive to their life, women considered themselves to be ‘unlucky’ rather than ill. Other family relatives, who also reported having difficult menstrual experiences, often confirmed this perception. Early experiences of pain were rarely discussed with friends, partly because women felt embarrassed to do so, and partly because they did not want to appear weak and unable to cope with what they thought were normal, albeit painful, periods. In order to cope with the pain, women reported withdrawing from social activities, spending time in bed and at times taking potentially harmful levels of analgesia:

 

R21: I would stay at home a couple of days each month…. But I just, you know … just assumed I was just one of them unlucky people that got bad period pains. I never really linked it to … well, I'd never even heard of endometriosis before. So … I just … I lived on Nurofen while I like had a period - like every four or five hours. (Age 26; Symptoms for 4 years prior to diagnosis)

 

3: Hormonal drugs provided temporary relief

Women were often prescribed hormonal drugs, such as the oral contraceptive pill, or they became pregnant, and so their symptoms were temporarily relieved. Whilst the symptom relief was certainly welcome, women still did not have a diagnosis for their symptoms.

The importance of a diagnosis

Having finally been diagnosed with endometriosis, women spoke about the relief that they felt now that they knew what was wrong with them. In particular, whilst they were not glad to have endometriosis, women were relieved that their symptoms were not caused by cancer. Having a diagnosis also provided women with a language in which to discuss their condition with others, especially employers, who could now be given a genuine medical reason for any absences from work.

Having a diagnosis also provided women with a legitimate reason for excusing themselves from various social activities when they felt unable to participate. Being able to say ‘my endometriosis has flared up’ appeared to be acceptable amongst various social groups.