{"id":79398,"date":"2025-10-28T06:59:00","date_gmt":"2025-10-28T06:59:00","guid":{"rendered":"https:\/\/gulftimes.ae\/endometriosis-registry-could-stop-guesswork-patients-say\/"},"modified":"2025-10-28T06:59:00","modified_gmt":"2025-10-28T06:59:00","slug":"endometriosis-registry-could-stop-guesswork-patients-say","status":"publish","type":"post","link":"https:\/\/gulftimes.ae\/?p=79398","title":{"rendered":"Endometriosis registry could stop ‘guesswork’, patients say"},"content":{"rendered":"
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Getty Images<\/span><\/div>\n<\/div>\n
Campaigners say a national registry could lead to faster diagnosis, treatment and outcomes for patients<\/figcaption><\/p>\n<\/figure>\n
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Nearly 3,500 people have signed a petition calling for a national endometriosis registry in the hope of improving care, waiting times and awareness.<\/p>\n
The condition affects one in ten women, but Endometriosis UK say poor recording within the NHS meant there was a lack of data about the number of sufferers and the success rate of various types of treatments.<\/p>\n
Hayley Barlow-Ford, from Edlington, said she believed a national registry would allow patients and doctors to make “real decisions, rather than relying on trial and error”.<\/p>\n
A Department of Health and Social Care (DHSC) spokesperson did not comment directly on the petition but said the government was “determined to improve endometriosis care”.<\/p>\n<\/div>\n
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Endometriosis is a condition in which cells similar to those lining the womb grow in other parts of the body, usually in the pelvic area.<\/p>\n
Symptoms include severe pain, heavy periods, fatigue and, in some cases, infertility.<\/p>\n
According to research by Endometriosis UK, it can take on average around nine years to be diagnosed with the condition.<\/p>\n
Ms Barlow-Ford, who was diagnosed in 2012, said she was led to believe a hysterectomy would help her symptoms, but it had little impact and she suffered further complications after the surgery.<\/p>\n
She said treatment had often felt “like guesswork”.<\/p>\n
The 44-year-old said: “If there had been a system tracking what works and what doesn’t, I could have seen for myself that a hysterectomy isn’t a cure and made a fully informed choice.”<\/p>\n<\/div>\n\n
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Hayley Barlow-Ford<\/span><\/div>\n<\/div>\n
Ms Barlow-Ford, who is from Doncaster, said doctors had told her her pain was normal<\/figcaption><\/p>\n<\/figure>\n
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Endometriosis UK said poor recording of the condition was partly to blame.<\/p>\n
For example, the charity said, if endometriosis was discovered during keyhole surgery the fact it had been found may not be formally recorded.<\/p>\n
“This means that numbers [of people] with the disease and types of treatment received cannot be accurately analysed,” a spokesperson said.<\/p>\n
“This must be improved in order to properly manage care and understand the full extent of those with the disease.”<\/p>\n
The charity said it would welcome the opportunity to work with the government on identifying and closing data gaps in endometriosis care.<\/p>\n<\/div>\n
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Jessica Smith, who launched the petition, has had three surgeries since she was diagnosed with endometriosis in her mid-twenties.<\/p>\n
The 32-year-old said the campaign had come from her “personal frustration” as a patient.<\/p>\n
She said: “It feels like we’re guinea pigs, there’s very much just a ‘try it and wait and see’ approach to our treatment.”<\/p>\n
A spokesperson for the DHSC said: “Endometriosis is a painful and debilitating condition, and women deserve timely diagnosis and care.<\/p>\n
“This government is determined to improve endometriosis care and this year we’ve made two new treatments available as well as investing \u00a380m to give GPs faster access to specialist advice.”<\/p>\n
Ms Smith said an endometriosis registry would “perfectly slot into” the government’s Women’s Health Strategy.<\/p>\n
“It just makes logical sense to track our treatments, I want the government to take it seriously,” she said.<\/p>\n
” I just want information, we all do. We are so in the dark with this.”<\/p>\n<\/div>\n<\/div>\n
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Getty Images<\/span><\/div>\n<\/div>\n![](\"https:\/\/static.files.bbci.co.uk\/bbcdotcom\/web\/20251021-134202-667692b2c6-web-2.32.2-1\/grey-placeholder.png\")
![\"Hayley](\"https:\/\/ichef.bbci.co.uk\/news\/480\/cpsprodpb\/d45b\/live\/22ab9a40-b35c-11f0-a5ed-d926a0229916.png.webp\")
Hayley Barlow-Ford<\/span><\/div>\n<\/div>\n