New Report Seeks Improvement in Endometriosis Care
The All-Party Political Group (APPG) on Endometriosis this month published its findings following an inquiry into the experiences of women with endometriosis in the UK.
Endometriosis Inquiry Report 2020
Sir David Amess, Chair of the APPG, observed in his introduction to the report that 'we have been humbled and sometimes shocked to hear the stories of people affected by endometriosis'.
Launched in February 2020, the inquiry has found that the time it takes to reach a diagnosis of endometriosis in the UK, on average eight years, has not changed over the past decade. The report seeks a commitment from governments across the UK to reducing the diagnosis time to four years by 2025 and down to less than one year by 2030.
Following a survey of more than 10,000 people including those who are suffering with endometriosis as well as healthcare professionals, the report has produced a number of worrying statistics related to the diagnosis of this debilitating condition:
- 58% of women with the condition visited their GP more than 10 times before achieving a diagnosis
- 21% visited doctors in hospital more than 10 times before diagnosis
- 53% attended Accident and Emergency due to their symptoms
- 27% went to Accident and Emergency 3 or more times
Endometriosis and its impact
Around 1.5 million women and girls across the UK are thought to suffer with endometriosis.
Endometriosis is a condition where the cells which normally line the uterus as part of the menstrual cycle, develop elsewhere in the body, causing pain and inflammation.
It can additionally cause fatigue, heavy periods, problems with sexual intercourse and difficulties with conception as well as bowel and bladder problems.
The psychological as well as the physical impact can be severe, causing depression and affecting a woman's ability to work. Ninety-five percent of the women with endometriosis who were interviewed during the inquiry said that it had adversely affected their well-being.
Report recommendations
The new report has made a number of recommendations intended to improve the quality of life and well-being of those who are affected by endometriosis.
- Reduce times for diagnosis of endometriosis
- Undertake an analysis of endometriosis services across the UK
- Develop NICE guidelines to include endometriosis which occurs outside the pelvic cavity
- To develop understanding of the issues which confront women from minority ethnic communities who suffer with endometriosis and ensure equality of access to endometriosis services
- To increase awareness of the conditions amongst the general population through incorporation of 'menstrual well-being' in the school curriculum
- To improve understanding of the symptoms of endometriosis amongst relevant medical practitioners
- To increase investment into research of the causes, treatment and diagnosis of endometriosis
Diagnosis and NICE Guidelines
NICE guidelines on the diagnosis and management of endometriosis were adopted across the UK in 2017 but, according to the report, they have not been implemented.
Despite the guidelines stating that endometriosis should be suspected where a girl or woman presents with the key symptoms the report observes that 'far too many report endometriosis never being mentioned despite long diagnosis journeys and multiple investigations for their symptoms.'
Symptoms which might indicate that a woman is suffering from endometriosis include chronic pelvic pain, period-related pain, pain during sexual intercourse, period-related or cyclical painful bowel movements and when passing urine. This distressing condition can also cause infertility.
The new report calls for improved training for primary care professionals and the implementation of the correct management pathways to ensure women receive appropriate referrals, probably to a gynaecology specialist, thereby aiming to reduce diagnosis times and access to treatment.
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