Endometriosis in the UK: Time for change

Published: 19th October 2020

Press Release: 

An Inquiry by the APPG on Endometriosis has highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urges Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time.

Read the full report here 

The inquiry surveyed over 10,000 people[1] with endometriosis, interviewed healthcare practitioners and those with the condition about their experiences, and found that:

• Average diagnosis times for endometriosis have not improved in over a decade – it still takes 8 years on average to get a diagnosis;

• Prior to getting a diagnosis and with symptoms:

  • 58% visited their GP more than 10 times

  • 43% visited doctors in hospital over 5 times

  • 53% visited A&E;

• Once diagnosed, only 19% know if they are seen in an endometriosis specialist centre;

• 90% would have liked access to psychological support, but were not offered this.

In order to support those with endometriosis, the APPG has called on all Governments in the UK to commit to a series of support measures for those with endometriosis including:

• Commitment to reduce average diagnosis times with a target of 4 years of less by 2025, and a year or less by 2030.

• To ensure a baseline for endometriosis diagnosis, treatment and management by implementing the NICE Guideline on Endometriosis Treatment and Management (2017), adopted across the UK, but not implemented.

• Up to 10% of those with endometriosis will have the disease outside the pelvic cavity, yet the NICE Guideline only provides a care pathway only for endometriosis within the pelvic cavity. The APPG is calling for NICE to ensure that care pathways for all locations of endometriosis are developed and implemented, starting with thoracic endometriosis.

• Investigation into the barriers faced in accessing care for those from black, Asian and minority ethnic backgrounds and end the ethnicity and gender gaps in medical research.

• Invest in research to find the cause of endometriosis, better treatment, management and diagnosis options, and one day a cure.

• A commitment from all 4 nations to include compulsory menstrual wellbeing in the school curriculum so that young people recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in schools in England from 2020, but is not UK wide.

Sir David Amess MP, Chair of the APPG on Endometriosis says “The report provides a stark picture of the reality of living with endometriosis, including the huge, life-long impact it may have on all aspects of life. It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously – or downplayed as linked to the menstrual cycle and periods. All UK Governments must take the recommendations in this report seriously and act to ensure that everyone with endometriosis has a prompt diagnosis, along with access to the physical and mental health support they need to manage their condition.

“The APPG heard many accounts of people with endometriosis not having access to the specialist care they need. Only 19% of those who responded to the survey knew they were seen by a specialist centre, and 90% would have liked access to psychological support yet this was never offered.

Our report highlights the urgent need for more research into the experiences and needs of those from LGBTQ+, black, Asian and minority ethnic backgrounds. We must do more to understand the health inequalities and barriers for those from minority backgrounds in accessing the care they need.

“The APPG will not rest until tangible improvements are delivered to all those who suffer from this condition”.

Commenting on the report, Emma Cox, CEO of Endometriosis UK said: “This report should be the final warning to Governments and the NHS that action must be taken on endometriosis. Implementing the recommendations in the report will reduce diagnosis time and ensure access to a minimum level of treatment and support for all those with endometriosis – saving on GP, hospital and A&E visits, as well as enabling those with the disease to live the productive lives they want. The NICE Guideline produced in 2017 gives the baseline for care, but despite being adopted across the UK, it has not been implemented; it needs to be.

“The outbreak of COVID-19 has presented further challenges to the NHS as well as those with endometriosis. With NHS services resuming across the UK, the Government and NHS have the opportunity to take note of the recommendations within this report to streamline care pathways and improve services for endometriosis, both saving resources and providing improved care and support.

“The average diagnosis time for endometriosis remains at 8 years – shockingly, it’s not changed in a decade. Action must be taken to drive this down. The post code lottery of access to healthcare practitioners who specialise in endometriosis needs to end. Implementing effective processes within the NHS will help healthcare practitioners support diagnosis and get those with endometriosis symptoms to the right place, in hospitals with the right expertise, at the right time.

Action is needed now, to ensure the next generation with endometriosis are not robbed of the future they deserve”.