Courtesy of www.endometriosis.org
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 8.5 year diagnostic delay.
This paper, by Karen Ballard and colleagues, 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 normalWomen 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)
2: Women were told that 'symptoms were normal'Having finally decided to seek medical help for their symptoms, many women were told by the General Practitioner (GP) that their symptoms were ‘normal’ and were therefore advised to take analgesic drugs when necessary. Often after repeated visits to the GP, women were prescribed the oral contraceptive pill, being told that this would ‘control’ their periods. This advice, coupled with women’s previous concerns that they were unable to cope with what they thought was ‘normal’ pain, often led them to question whether their pain was genuine or maybe ‘in their head’:
R15: You know, I was thinking, I was in a very stressful job - was my job something to do with it? Am I psychologically making myself have this pain? I've just got to the point where I just don't understand it at all!! I did think to myself, am I making this sort of thing happen? I mean that's how I felt eventually. I started thinking am I doing this on purpose so that I haven't got to go to work? But I don't really hate work that much that I would do that. (Age 32, diagnosed after 18 years of pain)
3: Hormonal drugs provided temporary reliefWomen 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.
4: Inadequate diagnostic methods were applied
Almost all women in the study were sent for a transvaginal scan to determine the cause of their pain. Whilst this test is efficient at identifying endometriomas (endometriosis cysts on the ovary), to date, it has not been shown to be good at identifying endometriosis in other areas. Hence, all but one of the women in the study received a negative scan result. Unfortunately, having a negative scan result added to the delay in diagnosis and often meant that women were once again told that their pain was ‘normal’.
R20: It was awful just going for these flipping internals all the time and being told there's nothing there. To actually keep going backwards and forwards and having it, and then there's nothing showing up. And when I've then mentioned about having the … is it the laparoscopy – having that done, they're "Well, no, it won't be done because there's nothing showing up on these [ultrasound]!" (Age 28; 6 years of pain prior to diagnosis)
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.
The findings of this study point towards the need for greater awareness of endometriosis symptoms. In particular, teenage girls need to be knowledgeable about what to expect from ‘normal’ menstrual experiences and when to seek medical help, and GPs need to have a better understanding of the symptoms associated with endometriosis as well as the need for appropriate diagnostic tests.
Ballard KD, Lowton K, Wright JT. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril 2006;86:1296-1301.