Endometriosis in the UK: Time for Change

The All-Party Parliamentary Group (APPG) on Endometriosis Inquiry Report 2020 called for urgent Government action to support 1.5 million with Endometriosis in UK.

The Inquiry surveyed over 10,000 people with a confirmed diagnosis of endometriosis and found the average time to diagnosis is 8 years, the same as it was a decade ago.

Prior to getting a diagnosis, 58% visited their GP with symptoms more than 10 times, 43% visited doctors in hospital over 5 times and 53% had visited A&E. The Report highlighted the devastating impact the condition has on the lives of sufferers and found that once diagnosed:

• 95% said endometriosis/the symptoms of endometriosis impacts their wellbeing negatively or very negatively.
• 89% felt isolated due to their endometriosis.
• 90% would have liked access to psychological support but were not offered this. 81% said endometriosis impacted their mental health negatively or very negatively.
• Only 19% knew if they were seen in an endometriosis specialist centre.
• 58% would have liked fertility support and treatment but were not offered it, despite endometriosis doubling the risk of
• 72% were not given any written information when diagnosed, leaving them without the knowledge and advice they need to make informed choices about their healthcare.
• 38% were concerned about losing their job, whilst 35% had a reduced income due to endometriosis.

What is Endometriosis?

Over 1.5 people with wombs have endometriosis.

It is a chronic and often debilitating condition where cells similar to those in the lining of the womb are found elsewhere in the body, the majority in the pelvic cavity, but also the diaphragm or thorax. Each month those cells react in the same way as those lining the womb, building up, breaking down and bleeding. The blood cannot escape and can cause pain, inflammation and the formation of scar tissue.

Some people experience mild symptoms whilst others severe. Symptoms include pain in lower stomach and back, period pains that prevent daily activities and heavy periods. It can lead to serious problems such as infertility, fatigue, bowel and bladder issues. There is no cure and treatment can include painkillers, hormone therapy or surgery, including a hysterectomy.

The report highlighted that pain from endometriosis is often normalised and dismissed as “period pain” by family or friends; symptoms are not recognised by healthcare practitioners, or sometimes the level of pain is simply not believed.

Key Recommendations of APPG

The report explores the issues relating to diagnosis, treatment and care pathways and investigated the wider issues of living with endometriosis from the impact on education and employment to mental health. The report also highlighted the barriers faced by black, Asian and minority ethnic communities as well as those who identify as LGBTQ+  with particular challenges around the use of gendered language and fertility.

APPG called on the Government to commit to a series of measures for those with the condition:

• Commitment to reduce average diagnosis times with a target of 4 years or 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 calls for NICE to ensure 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 to end the ethnicity and gender gaps in medical research.
• Investment 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 not UK wide.

It is hoped the Government take these recommendations seriously and act to ensure those with endometriosis have prompt diagnosis and access to vital physical and mental health support to manage this life-long condition.

It is clear that action is needed now.