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Launch of ‘Endometriosis in the UK: time for change’ – APPG on Endometriosis Inquiry Report 2020

“Endometriosis is the second common gynaecological condition and affects around 1.5 million women in the UK . It can affect all women and girls of a childbearing age, regardless of race or ethnicity. It is caused by cells which normally form a part of the lining of the womb growing elsewhere in the body but still reacting to the monthly cycle of hormones which regulate a woman’s period. This reaction causes a number of symptoms, the commonest of which are chronic pain and fatigue. The physical symptoms are not only debilitating in themselves but affect many other aspects of a sufferer’s life, leading to relationship problems and difficulty in fulfilling work and social commitments. Endometriosis can be an incredibly isolating disease.   

Despite the prevalence of the condition, an Endometriosis UK study showed 476,000 British women had to visit their GP more than 11 times for a positive diagnosis and endured on average a seven and a half year wait from their first visit until a positive diagnosis. There is a huge deficit in our knowledge of the disease – both in terms of medical research and in medical practice – and this deficit urgently needs to be addressed. At the same time the serious effects of endometriosis needs to be recognised more widely. In the same study, 94% of respondents reported the disease impacted badly on their mental health and yet mental health provision is not considered as part of endometriosis treatment.  

Currently, the only definitive way to diagnose endometriosis is by a laparoscopy. This is an invasive procedure which requires a camera to be inserted into the pelvis via a small cut near the navel. It requires a strong anaesthetic and can take days to recover. It is also the only way to monitor the progress of the disease so sufferers may have to undergo the procedure at regular intervals.

The current definition and criteria for statutory sick pay fails to recognise long-term conditions such as endometriosis, and statutory sick pay is available only to an employee for a linked period of sickness to a maximum of three years, which penalises people who have chronic long-term conditions  

Hull University is conducting research into identifying biomarkers for the disease, in the hope of developing a non-invasive method of detecting the disease and allowing much earlier diagnosis before the more serious complications have developed. However, this vital work which could improve the lives of millions of women is being undertaken on a shoestring budget. 

This lack of investment in research is not the only indication of the inexcusably low priority endometriosis has. The average diagnosis time for endometriosis hasn’t decreased in a decade and in the absence of a national strategy means care for those with endometriosis is a postcode lottery. We hope the launch of this report will raise the profile of this disease and give a voice to the many women whose suffering has so far gone unrecognised. 

It is long past time for genuine and sustained action on this disease and this report calls for us to  make a start by raising the profile and understanding of the severity of the impact of endometriosis, both with health professionals and the general public; much faster diagnosis; recognising endometriosis as a source of chronic disability; and significantly increased and properly funded research.”

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