Nada Khan is an Exeter-based GP and an NIHR Academic Clinical Lecturer in General Practice at the University of Exeter. She is also an Associate Editor at the BJGP.
Endometriosis is a condition that has not received the recognition it should given that it is a condition that is debilitating and is common, affecting approximately 6-10% of women.1 How women experience endometriosis care journeys today are a result of historical underfunding, a lack of research into women’s health issues, and women just not being listened to when they describe their pain or experiences.2
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) review has recently published a review of the quality of care provided to people diagnosed with endometriosis.3 The report examines the entire care pathway for a sample of UK-based patients diagnosed with endometriosis by looking through case notes for these patients, then surveying their hospital consultants and GPs on what happened during their care. The team also conducted an online survey of patient experiences of their endometriosis diagnosis and treatment. What can we learn from this report, and what can GPs do differently to improve diagnostic and treatment journeys for those with endometriosis?
Diagnostic journeys
As a condition presenting with heterogenous symptoms and severity, endometriosis in some cases is indeed a great imitator. However, certain signs and symptoms suggest a diagnosis of endometriosis, and this is where these symptoms can and should be recognised and assessed. Most patients will present to their GP. 80% in the NCEPOD study who were diagnosed in secondary care saw their GP with symptoms of endometriosis before diagnosis with varying symptoms including painful, irregular or heavy bleeding, and/or painful intercourse. Bowel and urinary symptoms were less frequent, but were the presenting symptoms in around 6-8% of cases.
A survey by Endometriosis UK suggested that the average length of time to diagnosis is almost 9 years in the UK, with 74% of respondents to that survey reporting that they’d seen their GP five or more times before diagnosis. Delays in the diagnosis of endometriosis have not improved over the past decade, and the Endometriosis UK survey results suggests that delays may have actually worsened since 2020.
A survey by Endometriosis UK suggested that the average length of time to diagnosis is almost 9 years in the UK, with 74% of respondents to that survey reporting that they’d seen their GP five or more times before diagnosis.
Menstruation is stigmatised, with a history (and current practice) of health care professionals not listening to women’s experiences of heavy bleeding and pain. These influences can seep into a woman’s reasoning when thinking about seeking medical attention for symptoms that are normalised by society, culture, and some medics as just part of being a woman. And this does translate into a patient delay. On average, it took patients responding to the NCEPOD survey two years to present to their GPs with symptoms.
What’s worrying in the NCEPOD patient survey was how those eventually diagnosed with endometriosis felt about their treatment from their GP. Half of the respondents felt that they were not listened to by their GP, and half also felt that their GP failed to provide compassionate care around their endometriosis diagnosis. The NCEPOD authors acknowledge that the patient survey is a self-selected population of women who responded because of their experiences of suboptimal care, but nonetheless, these results are not a positive endorsement of what happens when women talk to their GPs about endometrial symptoms.
In terms of what happened when women did present with symptoms suggestive of endometriosis, use of a pelvic examination and understanding why it was important to do one was highly variable amongst GPs. NICE guidelines, and good clinical practice would suggest that a pelvic examination should be performed in women presenting with symptoms of endometriosis, but the case review showed that just 40% of the women eventually diagnosed with endometriosis had one. In just under half of those women who were examined, their GPs reported that they didn’t feel confident in performing a pelvic examination, even when the examination went ahead. This is an important issue to remedy when findings on a pelvic examination may help to support a diagnosis of endometriosis or identify alternative pathology.
There wasn’t always enough information in the case notes of those included in the NCEPOD analysis to determine if what happened in primary care led to delays in diagnosis, but in the 136 women where there was enough information, a quarter were deemed to have delays in their initial referral to gynaecology. This impacted the quality of care for the majority of these women. Delays in diagnosis can mean that women don’t have access to treatment or management options, or considerations of potential impacts on fertility.
What’s worrying in the NCEPOD patient survey was how those eventually diagnosed with endometriosis felt about their treatment from their GP.
Moving on to management and referral, GPs in the NCEPOD study were generally good at starting treatment in general practice for pain and heavy periods. But when initial medications and treatments didn’t work, a high proportion of patients (82%) reported that ‘that was it’ – they didn’t get any further investigations to work out what was happening. This is reflected in research showing that GPs are uncertain about what to do when initial treatments are not effective due to a gap in guidance.1
Holistic care
Endometriosis can have a devastating impact not just from the severe physical symptoms and pain, but from the wider impact on mental health and quality of life.4 Acknowledging this is the first step towards providing patients with support for the wider impact of endometriosis on daily life. The NICE guideline for endometriosis recommends assessing for physical, psychosexual and emotional needs alongside fertility issues.5 Whether that’s a formal assessment, or perhaps just an acknowledgment and discussion with a patient that having severe pain, heavy bleeding, painful sex and all the other symptoms a woman might experience with endometriosis can have an enormous impact on everyday aspects of life. The NCEPOD report focuses on the low rates of referral to mental health and fertility services as an absence of care for women who might need these services. NCEPOD reviewers looking through the case notes of those women eventually diagnosed with endometriosis felt that a failure to refer onwards to supportive services such as pain clinic, mental health services or fertility services resulted in suboptimal care for a fifth of the women in the study.
The NCEPOD report criticises the lack of joined up thought and care for patients who need a more holistic approach. Here is where general practice can play a key role as a first point of contact for women, and as a place where care is coordinated for those who are not under a dedicated endometriosis service.
Learning points
There are several recommendations from the NCEPOD report which target each stage of the patient diagnostic and management pathway, with suggested actions to break down the barriers to endometriosis care at individual patient, health system and endometriosis specific levels.
Some of the NCEPOD recommendations will take time and thought to implement effectively, including raising awareness about endometriosis symptoms with patients and the public, and improving training on the recognition of symptoms of endometriosis in general practice to support initial assessment and management. Whether or not awareness raising campaigns amongst GPs work is a topic to explore for another day, but it’s worth remembering that Issues around diagnosis and treatment in primary care extend far beyond just a lack of awareness of endometriosis by GPs.1
We can inform ourselves about the common, but also varied symptoms that women with endometriosis experience so that when we see these symptoms constellations in practice, a little lightbulb might go off suggesting, ‘Hmmm. This could be endometriosis’. If you have half an hour, you could complete the RCGP e-learning course (developed in partnership with Endometriosis UK) on endometriosis, which aims to describe symptoms, treatment and when to refer to secondary care. A recent clinical practice article here in the BJGP is also well worth a read to consolidate knowledge on the assessment and management of endometriosis.6 Thinking more widely about the practice team, the NCEPOD website contains a slide set which could be used in a practice clinical meeting to highlight the key messages and spur conversation and shared experiences of managing people with endometriosis. But even more importantly, it’s worth thinking about how we may sometimes wrongly normalise symptoms like heavy bleeding or painful sex, key symptoms of endometriosis that women report are often dismissed.7
But even more importantly, it’s worth thinking about how we may sometimes wrongly normalise symptoms like heavy bleeding or painful sex, key symptoms of endometriosis that women report are often dismissed.
The expansion of women’s health hubs may well feed improved diagnostics and management pathways in the future, but as Sharon Dixon notes, does also run the risk of siloing women’s health issues away from the broader and holistic care that general practice can offer.2
Other recommendations can be put into direct practice, like asking people with endometriosis about the impact it’s having on them, and thinking about how to support emotional, sexual and fertility needs. This might help our patients feel they are getting the patient-centred and compassionate care that so many other women report missing out on.
The NCEPOD report also recommends the formalisation of an endometriosis care pathway, based on existing guidance from NICE, to include when to refer, diagnosis including imaging, management (pain, psychological, fertility) and follow-up care. This pathway needs to clarify and set out to what to do when initial treatments don’t work in primary care given that GPs have identified this as a gap in their knowledge and in existing guidance.
Finally, are we now at a critical mass of knowledge about the gaps in care to do something about them? Previous initiatives have not succeeded in widespread improvements in diagnosis time or experiences of people with endometriosis. Sharon Dixon has written here in the BJGP about the need to change the way we develop, research and deploy pathways that take into account the complexities of endometriosis diagnosis.2 This NCEPOD report adds to that momentum and contributes to a feeling that we are running out of excuses not to act to improve endometriosis care for this underserved group of patients.
References
- Dixon S, McNiven A, Talbot A, Hinton L. Navigating possible endometriosis in primary care: a qualitative study of GP perspectives. Br J Gen Pract. 2021;71(710):e668-e76.
- Dixon S, Mawson R, Kirk UB, Horne AW. Endometriosis: time to think differently (and together). Br J Gen Pract. 2024;74(742):200-1.
- Endometriosis: A Long and Painful Road. National Confidential Enquiry into Patient Outcome and Death; 2024.
- Gambadauro P, Carli V, Hadlaczky G. Depressive symptoms among women with endometriosis: a systematic review and meta-analysis. Am J Obstet Gynecol. 2019;220(3):230-41.
- Endometriosis: diagnosis and management: NG73. National Institute for Health and Care Excellence; 2017.
- Hare L, Roberts V, Hare NP, Mughal F. Assessment and management of endometriosis in young people in primary care. Br J Gen Pract. 2023;73(737):572-3.
- Davenport S, Smith D, Green DJ. Barriers to a Timely Diagnosis of Endometriosis: A Qualitative Systematic Review. Obstet Gynecol. 2023;142(3):571-83.
Featured image: Weathered statue, taken by Andrew Papanikitas, 2022
