The Other Side
No one likes to wait for things - standing in a queue at the checkout, sitting in traffic at a red light, waiting to be seated at a restaurant, these are all minor irritations in the grand scheme of things and don’t really impact our day to quality of life. When it comes to our health, delays can have big impacts on the way we live, and nowhere is that truer than in the case of endometriosis. Although the actual length of time is different depending on where you live and what medical care you have access to, there exists a universal delay between the onset of endometriosis symptoms and a diagnosis; what is known as ‘diagnostic delay’.
Depending on what studies you read, there are many different estimates for this delay, some say its 2 years, some 7 years, some 9 years - these are averages though so there is a broad scope of variety in diagnostic delay. Women with endometriosis therefore experience a length of time whereby they are suffering, but not receiving any treatment, or receiving treatment for a misdiagnosed condition they don’t actually have, or have in addition to endo. Often endometriosis is mistaken for another medical condition; studies highlight that cystitis, irritable bowel syndrome (IBS), pelvic inflammatory disease (PID) and sexually transmitted disease are the most common misdiagnoses for women with endo. That’s not to say that endometriosis and other conditions like IBS cannot exist together, in fact it has been shown that women with endo are more likely to be diagnosed with IBS even if they have already been diagnosed with endo.
Clearly there are factors contributing to diagnostic delay in women with endo, but what are those factors? It turns out it depends who you ask. Studies investigating diagnostic delay found that young age at symptom onset, use of oral contraceptives or painkillers, misdiagnosis and cyclic symptoms makes the delay longer. However, this still doesn’t tell us why the delay actually happened. When studies have asked patients about their experience several answers keep coming up, namely: normalisation of symptoms by patients and medical professionals, the taboo nature of discussing menstruation and menstruation related issues in some families, lack of specialist knowledge by doctors, and lack of education about endometriosis symptoms for young girls.
Anyone with endometriosis reading that list will most likely identify with at least one of those factors, but what about those who are specialists in the field of treating endo? In their years of experience of treating and diagnosing endo surely they have some insight into what affects treatment and diagnosis? That is the subject of the paper I’m going to be writing about today (you read the study by following this link). This study gave questionnaires to gynaecologists from 67 different hospitals in the Netherlands asking them about a broad range of topics to do with the treatment and diagnosis of endometriosis.
The gynaecologists who responded were a fairly good representative sample, having roughly equal numbers of men (52%) and women (48%) and coming from a range of different gynaecology specialisations and hospital types.
Firstly, the gynaecologists were asked what they thought contributed to the diagnostic delay in endometriosis, their answers were divided into three parts: contributing factors from 1) patients 2) general practitioners 3) gynaecologists. The image below shows their responses
The first figure shows factors from patients that could contribute to diagnostic delay and what percentage of gynaecologists agreed
The second figure is factors from general practitioners that could contribute to diagnostic delay and what percentage of gynaecologists agreed
The last figure is factors from other gynaecologists that could contribute to diagnostic delay and what percentage of gynaecologists agreed
Some interesting responses here (and I should say that not all the responses were given on these figures, just the top 7). The main factors for patients that these gynaecologists identified was lack of knowledge and trivialising symptoms, which may on the face of it, sound a little callous. However, I think what they were trying to put across was that women and young girls are not being educated about endometriosis and are told to play down, or just not talk about, menstruation related problems due to social stigma.
For GPs the main factors identified were lack of knowledge, trivialising symptoms, failure to recognise [that it could be endometriosis], and misdiagnosis. These responses are of slightly more interest - normally patients aren’t supposed to be the experts or diagnose themselves (although that does seem to be the case with an alarmingly large number of women with endo) because it falls to the medical professionals to fulfil this role. Yet, over half of gynaecologists in this survey agreed that GP’s lack of knowledge was a contributor to diagnostic delay. Similarly a third believed GP’s were playing down the importance of symptoms (trivialising), or were unable to recognise the signs of endo, or misdiagnosing it, which results in diagnostic delay.
The view of other gynaecologists is quite interesting too. Over a third agreed that gynaecologists were using restraint when it came to diagnostics, meaning they showed reluctance to use techniques like laparoscopy, MRI or ultrasound to aid in diagnosing of endometriosis. A quarter also agreed that lack of knowledge, and a third agreed that failure to recognise symptoms amongst gynaecologists was contributing to delayed diagnosis. I find this very interesting as you would expect much less apparent ignorance of one of the most common gynaecological conditions from a group of doctors who specialise in gynaecology.
For the next question the gynaecologists were asked was ‘what could each of these groups of people do to reduce the diagnostic delay of endometriosis?’ The figures below shows the top results
I’ve got a lot to say about these answers and I’m sure you’ve got plenty to say about them too, but I’ll keep my interpretation brief. The top agreed upon statements by the gynaecologists surveyed for patients were ‘be more assertive’ and ‘increase your knowledge’. While being assertive and increasing your knowledge about any condition that you suffer with are important aspect to living with said condition, it’s not your responsibility – it is the responsibility of the doctor you are seeing to recognise your symptoms, to diagnose and treat them in the appropriate manner.
Remember this is a paper on diagnostic delay - the only thing a patient can do to delay their own diagnosis is not go to the doctor in the first place, or lie to the doctor about their symptoms. As I don’t believe women with endo are refusing to see doctors or lying about their symptoms (although this may be the case in places and cultures where social stigma around menstruation forces women to hide their symptoms, but even then it is not the patient’s fault, it’s the shame forced upon them) then a person’s assertiveness and knowledge are, to an extent, irrelevant.
‘Increasing knowledge’ in patients also falls into the broader category of education about endometriosis, which we discussed earlier. So it may be that the gynaecologists who completed this survey are more in favour of public education about endo, rather that expecting people to educate themselves in order to reduce diagnostic delay.
It’s also quite interesting that although 31% of gynaecologists thought that GPs trivialising symptoms was a cause of diagnostic delay in endometriosis, only 13% recommended GPs limit trivialisation. This may be due to them more highly recommending increasing knowledge about endo and therefore trivialising symptoms would be reduced anyway. In any case this study highlights that the gynaecologists surveyed believe lack of education about endo is the top cause of diagnostic delay amongst all groups.
What do you think about these results? Do you agree? Disagree? Whose responsibility is it to increase education about endometriosis and how can that be achieved? Feel free to add any thoughts in the comments section below.