The average time it takes for a symptomatic woman to receive a diagnosis of endometriosis is now 8 years and 10 months, a survey showed – representing an increase of 10 months since 2020. This delay in accessing treatment, during which the disease may progress, can lead to worsening physical symptoms and a risk of permanent organ damage, according to leading charity Endometriosis UK.
Symptoms can include chronic pelvic pain, dysmenorrhea, infertility, dyspareunia, dysuria, dyschezia, and fatigue. There is a wide variety of potential treatments, with substantial discrepancies between official management guidelines.
The new research, published to coincide with this year’s Endometriosis Action Month, was based on an online survey of 4371 women who had received a diagnosis of endometriosis.
As well as a rise in time to diagnosis, it revealed:
- 78% of women had experienced one or more doctors telling them they were making a fuss about nothing or similar comments, and many had the severity of their symptoms questioned – this number had increased from 69% in 2020.
- 70% of respondents had visited their GP five or more times with symptoms prior to receiving a diagnosis, and 47% had visited 10 times or more.
- 52% had visited A&E at least once with symptoms before diagnosis, and 26% of respondents had visited three or more times. Only 17% had been referred for gynaecological assessment at their first visit.
- 20% reported seeing a gynaecologist 10 or more times before being diagnosed.
Limited Availability of Specialist Treatment
An inquiry by the All-Party Parliamentary Group on Endometriosis in 2020 had found similar issues. It noted that even when symptoms were recognised, effective care pathways had not been implemented within the NHS. There was limited availability of and access to specialists with expertise in recognising and treating the disease, often with a ‘post code lottery’ as to service provision, it said. The 2017 NICE guideline on endometriosis had yet to be implemented, and the 1.5 million women with endometriosis “deserve better”.
That report described the then delay in diagnosis as “unacceptable”, a point echoed by the new report. Endometriosis UK said that many healthcare practitioners were lacking understanding of the disease, and governments were failing to recognise its impact or allocate sufficient resources to diagnosing it. CEO Emma Cox said: “Taking almost 9 years to get a diagnosis of endometriosis is unacceptable.”
She said in a statement that raising awareness of the symptoms of endometriosis with the general public, healthcare practitioners, and managers would be a step towards shortening the very lengthy waits for diagnosis. Lengthening times to get a diagnosis “must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health”, she said.
The charity said that one in 10 women were affected by endometriosis, and it could have an impact from puberty to menopause and beyond. Its report called on UK governments to commit to an average endometriosis diagnosis time target of 1 year or less by 2030, as well as ensuring that all healthcare practitioners received training on menstrual health and endometriosis awareness.
More Education and Research Needed
Endometriosis UK also urged NHS commissioners and providers to urgently drive down gynaecology waiting times, as well as asking governments to invest in public health education campaigns on endometriosis symptom recognition. More research investment is also needed to find the cause of endometriosis, improve treatments, and determine better ways to diagnose the disease, which is the second most common gynaecological condition (after fibroids) in the UK.
Minister for Women’s Health Strategy, Maria Caulfield, said in a press release: “More must be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report.”
She added: “Through the Women’s Health Strategy, we are working to turn dismissed, ignored and belittle[d women] into listened to, understood and empowered [ women ].”
Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists, said in the release: “Endometriosis can have significant impacts on every aspect of women’s lives – and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.
“The barriers to timely diagnosis of endometriosis and other gynaecological health conditions are complex, but it is clear that more action is desperately needed. We need education and national communications campaigns to support women and girls to recognise their symptoms and feel confident seeking help; we need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions; and we need investment in services to ensure that we have the right equipment and training for healthcare professionals to achieve timely diagnosis.”
Source link : https://www.medscape.com/s/viewarticle/average-endometriosis-diagnosis-delay-now-almost-9-years-2024a10004ax?src=rss
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Publish date : 2024-03-06 11:29:27
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