Endometriosis Action Month: Enhancing care through collaboration

Endometriosis Action Month is marked each year in March. The campaign, run by Endometriosis UK, aims to raise vital awareness of the condition and its symptoms.  

Dr Sharon Dixon, a GP and NIHR Research Fellow at the Nuffield Department of Primary Care Health Sciences and member of EndoCaRe, is working with Dr Lisa Hinton and Dr Abi McNiven to examine ways in which primary care staff and researchers can collaborate to provide better outcomes and care for patients. Dr Tatjana Gibbons, a doctor and PhD student at The Endometriosis Care Centre (EndoCaRe), is working to improve endometriosis diagnostics.

To mark Endometriosis Action Month, in a collaboration between NDPCHS and EndoCaRe, Sharon and Tatjana discuss research projects taking place to improve understanding, diagnosis and support for endometriosis patients.  

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Endometriosis is the presence of womb-lining like tissue outside of the uterus. This can be anywhere, but is mostly in the lower abdomen around the outside of the womb and ovaries. The endometriosis tissue can bleed in line with the menstrual cycle, and this can cause pain and sometimes scarring. However, endometriosis is a complex and varied condition: some people don’t have any obvious symptoms while many others experience marked and debilitating period pain, pelvic pain, pain with sex, and difficulties in getting pregnant.

Endometriosis can also contribute to symptoms affecting the bladder and the gut or bowels (What is endometriosis? | Endometriosis UK (endometriosis-uk.org)). The true community prevalence is not known, but it is estimated to affect up to 8.6 percent of people assigned female at birth, and is seen more commonly in those seen in specialist pelvic pain (15-71%) and fertility clinics (9-68%). Endometriosis has significant impacts on quality of life.

We know that people with endometriosis can experience complicated and difficult journeys to, and through care, including the often long journey towards being given a diagnosis of endometriosis. This has not changed significantly over time, despite guidelines and awareness raising campaigns. These difficult journeys were highlighted in the English 2022 Women’s Health Strategy, which identified endometriosis (and pelvic pain) as important areas where improvements in care and diagnosis are needed.  

In the Nuffield Department of Primary Care Health Sciences (NDPCHS) we are working  to develop understandings about how to deliver the improvements in care that are demonstrably needed. Our research with GPs shows that even when they are aware of endometriosis, they have many things to consider when they are seeing people with (undifferentiated) symptoms that could suggest endometriosis. This includes needing to consider other potential causes, such as cancer or inflammatory bowel disease, that are also often associated with delays in diagnoses and that can present with similar or the same symptoms.

GPs also highlighted a tension or gap in guidance. While national and international guidance advises referral if symptoms are not controlled with a trial of treatment with medications such as contraceptive tablets to suppress symptoms, or anti-inflammatory medications, these are also treatments that can be advised for endometriosis-associated pain (though there is less evidence for the effectiveness of anti-inflammatories in this pain). There is little evidence or guidance about what to do if or when these treatments are effective in reducing symptoms. Interpretations of what ‘improved’ means, the impact of continuity of care, and follow up after trials of treatment are all areas where greater understanding could help. Working with our Patient and Public Involvement (PPI) advisers, with lived experience of endometriosis and endometriosis-associated pain, we published some tips for GPs and GP teams to consider when caring for people with possible endometriosis. 

One challenge in endometriosis care is that, until recently, the only way to reliably diagnose the condition was to have a surgical examination called a laparoscopy – a procedure associated with risks and requiring a specialist assessment. This situation is changing as specialist imaging and other tests are developed.  

This is welcome and will greatly enhance our understanding and knowledge about who may have endometriosis and what symptom patterns suggest this. However, we are mindful that most of the knowledge about endometriosis comes from specialist clinics, and may not resonate with all experiences of endometriosis and all people with endometriosis. While better tests will help extend our understanding of the range of endometriosis needs and experiences, as testing is expanded we need to make sure that we have treatments to offer, access to specialist services, and resources and information that are relevant to and for patients seen in general practice. Better testing will help us work towards this, but these processes need to happen in parallel.   

This knowledge needs to come from primary care. Currently, most endometriosis knowledge comes from specialist clinics and research settings and is presented at specialist conferences and published in specialist journals. Likewise, most primary care research is published in primary care journals. These knowledge silos matter, and we are actively exploring ways to bridge them and collaborate to improve knowledge and care journeys.  

We are developing an international network of primary care and community health-based endometriosis researchers. This aims to develop a collaborative space where primary care evidence can be shared and collated, and also integrated within specialist community knowledge forums. This will create opportunities to share experience and expertise from primary care about improving diagnostics from other conditions, such as cancer, by using primary care symptom evidence and experience. If you are a primary care researcher and would like to support or join this network when it is established, please contact Sharon Dixon to make an expression of interest.  

In the NDPCHS and (EndoCaRe), we are also glad to be beginning an NIHR funded project later in 2024 designed to understand endometriosis care journeys, from symptoms, to primary care, to specialist care and beyond. We are collaborating with specialist care and The Endometriosis Care Centre (EndoCaRe) and will be speaking to people with experience of endometriosis and clinicians along the whole care journey.  

EndoCaRe,  based in the Nuffield Department of Women’s and Reproductive Health, serves as a specialised clinical and research centre dedicated to addressing the complex challenges facing those with endometriosis. The centre facilitates collaboration among clinicians, scientists, and students to explore the causes of the disease endometriosis and to enhance our understanding of its diverse manifestations, which is crucial for developing new treatments and non-invasive diagnostic techniques.  

The synergy between the clinical and research teams allows the centre to utilise diverse research approaches to investigate a variety of topics, including studies to outline the mechanisms underlying endometriosis-associated pain, discovering new disease markers, and understand the genetic basis of endometriosis.  

One ongoing study, partially funded by the NIHR,  at the EndoCaRe Centre is the DETECT study (Detecting Endometriosis inTegrins using teChneTium-99M). Its objective is to develop a non-invasive imaging test for endometriosis to help overcome current imaging limitations, particularly in the detection of superficial endometriosis, which is difficult to detect Without surgery. The study has shown promising results so far, and as the study progresses, the potential of this new test will become clearer. 

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Sharon Dixon holds an NIHR Doctoral research fellowship NIHR301787.  

Disclaimer: The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.