The All-Party Parliamentary Group (APPG) on Endometriosis has found that it takes up to eight years for people to be diagnosed with the condition.
The group – which was launched in 2018 to raise awareness of endometriosis in Parliament – has revealed some shocking insights into the disorder.
The inquiry surveyed over 10,000 people with endometriosis and interviewed healthcare professionals about their experiences.
The APPG found that the average diagnosis time has not improved in over a decade – it still takes eight years on average to get a diagnosis.
Prior to getting a diagnosis, 58% of people visited their GP more than 10 times with symptoms, 43% visited doctors in hospital more than five times, and 53% visited A&E.
Once diagnosed, only 19% know if they are seen in an endometriosis specialist centre.
And 90% of those affected said they would have liked access to psychological support, but were not offered this.
Endometriosis is where cells like the ones in the lining of the womb are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb, building up and then breaking down and bleeding.
Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
Endometriosis causes painful or heavy periods and can lead to serious problems such as infertility, fatigue and bowel and bladder issues.
To combat this, the APPG has called on the government to commit to a series of support measures for those with endometriosis.
These include a commitment to reduce average diagnosis times with a target of four years or less by 2025, and a year or less by 2030.
Other measures include an investigation into the barriers faced in accessing care for those from Black, Asian, and minority ethnic backgrounds.
They also want the government to invest in research to find the cause of endometriosis, better treatment, management and diagnosis options, and one day a cure.
Sir David Amess MP, chair of the APPG on Endometriosis said: ‘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.’
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.’
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