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endometriosis research made accessible to all

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Can't get no satisfaction

While clinical and experimental work on endometriosis is essential for developing new treatments and expanding our knowledge of the disease, another important aspect of endo research is understanding the way in which the disease affects the people who deal with it every day. Such ‘qualitative’ research looks at the experiences of women and the wider reaching effects of the disease on family, partners and society as a whole.

When dealing with a chronic health condition like endo, there is going to be a lot of contact between patients and medical health professionals. The knowledge and skill of those professionals with regard to endo thus determines the patient’s satisfaction with their treatment. Endometriosis though is a condition that is surrounded by incomplete knowledge and misinformation, we certainly don’t know everything about it and so treatment, as yet, cannot be perfect. Nevertheless, medical professionals who understand and learn about endo can provide patients with much needed ways to manage their symptoms.

Unfortunately there are still lots of women with endo who do not receive the care and medical management they deserve. Nothing highlights this more than the diagnostic delay of endometriosis (i.e. the time it takes between symptoms starting and getting a diagnosis of endo). In most developed countries this varies between 7-12 years and is often the result of symptoms not being taken seriously, or pain normalised because of mistaken beliefs around menstruation that still exist within society and the medical community today.

So how satisfied with their medical experiences are women with endo? A recent paper aims to assess just that. You can read along with the whole paper for free by clicking on this link.

The authors of this paper gave questionnaires to women diagnosed with endo from Austria, Germany and Switzerland, asking them about their satisfaction with medical support and what factors influenced whether they were satisfied or dissatisfied.

Firstly then we need to establish what proportion of women were either satisfied or dissatisfied with medical support, which is shown on the chart below.

A fairly equal distribution of satisfied and dissatisfied. The scope of the analysis was limited by there being no range for women to choose from e.g. very satisfied, somewhat satisfied, somewhat dissatisfied etc, but it is still interesting to see that nearly half of respondents would class themselves as dissatisfied with medical support.

Let’s dig a bit deeper into these responses and see what factors might affect them. What factors do you think should be included? Women with different stages of endo might have different levels of medical satisfaction, so let’s see what the results said

Perhaps surprisingly, not much difference in satisfaction proportions within stages of endo, this could be due to there being no correlation between stage and symptoms, the only question directly regarding pain was to women with chronic pain caused by endometriosis, the result of which you can see below.

This result is more like what we would expect. Women with chronic endo-related pain were significantly more likely to be dissatisfied with medical support.

Aside from pain symptoms there are several other factors that can influence how a woman with endo would judge how well she was being supported. The list of those factors is probably quite long so the authors of the study addressed three key areas: fertility, pain therapy and mental health support and when these were discussed. The charts below shows when these issues are brought up affects satisfaction.

We can see that there were far more women satisfied with medical support and far less women dissatisfied with medical support when desire for having children was discussed at the time of their diagnosis. Let’s see if the same applies for pain therapy and mental health support

A similar situation to what we’ve seen previously then. Women with endo are far more likely to be satisfied with medical support if it is offered around the time of diagnosis. Given that endometriosis can be detrimental to a person’s physical and mental health and the longer someone has to deal with these symptoms the worse it becomes, taking action on this research is a step toward reducing the huge burden endo can place on someone’s wellbeing.

One other factor this study looked into was the most helpful sources to gather information on endo in women who were either satisfied or dissatisfied with medical support.

This is quite interesting to see. Women with endo who were dissatisfied with medical support gathered info less from doctors and more from online and exchange with other women. The study didn’t report what the online sources they used, perhaps they weren’t super high-quality ones like this one obviously is :) but it goes to show that communication with doctors as a source of information about endo has a huge impact on women’s satisfaction with medical support.

All of this information can be used to better inform ways in which medical professionals can maximise satisfaction for their patients. In fact the authors came up with a list of the top 14 suggestions for improved medical support based on this current study, you can read the full list in the paper, but the top 10, in order of priority were:

It may or may not be realistic for doctors to provide everything on this list (such as creating personalised treatment plans), particularly in countries where governments put policies in place that put pressure on doctors and medical professionals with heavy workloads and quota centred patient targets. However, better education about endometriosis in the medical profession, schools and public is something that definitely can be achieved with the right initiatives as can taking women’s pain and fertility desires seriously. Research like this shows there are achievable changes that can be made that will make a significant impact on the wellbeing of women with endo.

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Dr Matthew Rosser

I have over 15 years experience researching endometriosis, endometrial cancer and fibroids. During this time I have       noticed that whilst research is regularly published on               endometriosis very little is reported accurately to the public in mainstream media. This blog aims to educate and inform anyone who wishes to learn more about the science and research into endometriosis.


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