The UK’s leading endometriosis charity, Endometriosis UK, is calling on the government to ensure the National Institute for Clinical Excellence (NICE) update its guidelines on the condition
The charity says the NICE guidelines have significant gaps and with eight years as the average time to get a diagnosis, more needs to be done to support women.
Endometriosis affects one in ten women and those assigned females at birth from puberty to menopause, although the impact may be felt for life.
For some, symptoms make it difficult to succeed in education or stay in employment, and the disease costs the UK economy an estimated £8.2 billion per year in treatment, healthcare, and loss of work.
During March 202, as part of Endometriosis Action Month, Emma Hardy MP and Hannah Bardell MP, joint chairwomen of the APPG on Endometriosis, will table an Early Day Motion to ask for an update on NICE Guideline (NG 73) on Endometriosis: diagnosis and management, to begin this year.
Endometriosis UK will be mobilising its supporters to write to their MPs to ask them to support this EDM.
The charity wants a full review of the guideline, with gaps being identified and current best practices and evidence evaluated. It hopes the three key areas will be looked into.
Improvement in pain management
Despite endometriosis causing chronic and sometimes debilitating pain, many experiencing very painful symptoms are not able to access pain management services. A 2020 study by the APPG on Endometriosis, supported by Endometriosis UK, found that lack of pain management support was a commonly mentioned theme, and 58 percent of those with endometriosis would have liked to have been offered pain management services, but were not. The only mention of non-drug options for pain management in the current NICE guideline is a reference to there not being evidence to support the use of Chinese herbal medicines; there is no reference to non-pharmacological pain management options such as pelvic physiotherapy or psychological interventions.
Endometriosis being outside the pelvic cavity
The charity said this can occur in up to 12 percent of those with the disease. The current guideline covers only endometriosis within the pelvic cavity, despite up to 12 percent of those with endometriosis also having the disease elsewhere in the body – that’s up to 180,000 in the UK. As this is excluded from the NICE guideline, there are no care pathways for those with thoracic endometriosis or any other extra pelvic endometriosis.
Endometriosis outside the pelvic cavity is most commonly found within the chest cavity, including lungs and diaphragm, and is referred to as thoracic endometriosis. Depending on where the endometriosis is found, it may result in chest pain, sometimes coughing up blood, lung collapse, or blood found in the chest cavity.
These unpleasant, scary symptoms may go undiagnosed or misdiagnosed for many years – often longer even than the eight years, it takes on average between the onset of symptoms and diagnosis of pelvic endometriosis.
Earlier this year, Endometriosis UK backed a joint statement by the British Society for Gynaecological Endoscopy (BSGE) and the Royal College of Obstetricians and Gynaecologists (RCOG) calling for improved care for those with thoracic endometriosis.
Mental health impact of those living with endometriosis
A 2020 APPG study found 81 percent of those with the disease said endometriosis had badly impacted their mental health, and 90 percent would have liked access to psychological support, but were never offered this.
Long diagnosis times when symptoms may not be believed, living with a chronic condition, living with chronic pain, and for some challenges around fertility can all have an impact. The impact on mental health needs to be recognised and supported by recommendations in the updated NICE guideline.
Emma Cox, CEO of Endometriosis UK, said: “Those with endometriosis often ignored or misunderstood. The NICE guideline sets the baseline for care in the NHS, yet it has notable gaps, meaning lack of support and lack of pathways for care. We want to see improved pain management and mental health support, the inclusion of endometriosis outside the pelvic cavity, along a gap analysis to identify other areas that are missing. Due to these omissions, those with endometriosis are being let down and maybe left without access to the care and treatment they need.”
“We hope that the Government realises that any delay in improving this guideline prolongs the agony of many of those with the disease. An update could be transformative to many lives now and in the future.”
The NICE guideline has been formally adopted by the health services of all four nations of the UK but has not been fully implemented. Endometriosis UK has been asking the Governments responsible for healthcare in England, Wales, and Northern Ireland to look into this. In Scotland, an analysis of the extent to which the guideline had been adopted has already taken place and the Scottish Government is due to announce their next steps soon.
To find out more about the work of Endometriosis UK, click here.
Learn more about endometriosis: