Endometriosis should be treated as a chronic condition by the NHS and taken as seriously as illnesses such as diabetes and bowel disease, experts have said.
A study looking at the quality of care provided to adult patients who had been diagnosed with endometriosis found that within healthcare, the condition is often treated as multiple isolated episodes of acute care, instead of being seen as a continuum of symptoms in the same way conditions such as diabetes are recognised.
Endometriosis is a condition where tissue similar to the womb lining grows elsewhere, such as the ovaries and fallopian tubes, and can affect fertility and other pelvic organs. Symptoms include painful periods, painful bowel movements, pain when urinating and pain during or after sex. It is thought to affect about one in 10 women in the UK of reproductive age.
The report, published by the National Confidential Enquiry into Patient Outcome and Death, an independent healthcare charity, also recommended that training for healthcare professionals should be improved to recognise the symptoms of endometriosis such as pelvic pain and heavy periods, and that patients experiencing endometriosis should be asked about how the condition affects them beyond just the physical symptoms.
Endometriosis care has long been recognised as substandard, with a previous report finding that on average women are waiting nearly nine years for a diagnosis in the UK.
Emma Cox, the chief executive of Endometriosis UK, said that the report “clearly evidences the issues faced today by those with endometriosis, and the recommendations show how improvements can – and must – be made,” and that “implementing these will not only reduce suffering for those with endometriosis, it will also save the NHS time and resources”.
Cox added: “[The report] provides new research but highlights longstanding issues; those with endometriosis have faced delays in accessing treatment and care for far too long. The report comes at a perfect time, we have a new government who have committed to no longer neglect women’s health, and to prioritise women’s health as the NHS is reformed.
“Endometriosis UK looks forward to working with ministers and government to implement the recommendations within the report, improve endometriosis care and make a difference to 1.5 million with the disease.”
Dr Geeta Kumar, who is vice-president for clinical quality at the Royal College of Gynaecologists, said: “Endometriosis is a chronic condition that can have a significant impact on the physical and mental health of those living with it, and delayed diagnosis is currently a significant issue.
“This insightful deep dive into how women and people with endometriosis are cared for by the NHS found room for improvement in around half of the patient cases studied. Clear recommendations are provided for NHS organisations, royal colleges and individual teams to support through audit and quality improvement initiatives.”
Kumar added: “The overarching message is to implement holistic, joined-up multidisciplinary care with appropriate referral pathways accessible for both primary and secondary care including discharge planning and follow-up. Women reported better care experiences when referred to specialist centres and the key role of specialist endometriosis nurses also shines through.”
NHS England has been approached for comment.
