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Endometriosis diagnosis times could be reduced thanks to new NHS initiative: 'Some women are left waiting for answers for nine years'

Endometriosis diagnosis times could be reduced thanks to new NHS initiative: 'Some women are left waiting for answers for nine years' READ MORE: The real reasons you wake up at 3am - it's not normal insomnia By MOLLY LEE Published: 15:21 GMT, 29 October 2025 | Updated: 15:28 GMT, 29 October 2025 Endometriosis UK is urging doctors to use Jess's Rule, a three strikes and rethink approach, to speed up diagnosis of the gynaecological condition. It takes nearly nine years, on average, for someone with endometriosis to receive a diagnosis after first visiting their GP, leaving millions of women suffering in silence and feeling disbelieved. A 2024 report by Endometriosis UK found that 47 per cent of people surveyed reported seeing a GP ten or more times before being diagnosed with the condition, which causes excruciating pain and infertility. However, charity bosses now hope that diagnoses can be sped up thanks to Jess's Rule. It was introduced on September 23, 2025, and requires GPs to "reflect, review, and rethink" if a patient presents with the same or escalating symptoms three times without a diagnosis or improvement. The initiative's roots lie in tragedy; it's named after 27-year-old Jessica Brady who died from stage four breast cancer after her symptoms were dismissed more than 20 times by her GP. She died three weeks after her terminal diagnosis. Roughly 1.5 million women in the UK have an endometriosis diagnosis, but thousands—if not millions more—also believe they have the condition. It causes endometrial tissue - tissue similar to uterine lining - to grow outside of the uterus, such as on the cervix, bladder, and ovaries, where it collects and thickens over the course of every menstrual cycle. More than 1.5 million women are diagnosed with endometriosis in the UK When a woman comes on her period, this rogue tissue also breaks down, leading to inflammation and scar tissue binding to and stiffening organs, causing a pulling sensation and sharp, shooting pains. The pain can be unbearable for some women, and a build up of scar tissue can block the fallopian tubes, as well as disrupt the hormone balance necessary for ovulation, making it impossible to conceive. The impact on a woman's quality of life can be enormous, from keeping her from working or attending school and socialising with friends. Tragically there is no known cure for endometriosis, and treatment is limited to managing pain symptoms, or key hole surgery to remove the rogue endometriosis tissue and loosen scar tissue. In the most severe cases, a full hysterectomy may be offered. In the light of the introduction of Jess's Rule, the Daily Mail spoke to three women who struggled for years to get a diagnosis of endometriosis. Their stories are very different, but they share a hope that the new initiative will help other women like them. Elle Courtonel from Leicestershire It took Elle Courtonel 20 years—and a lot of pain and frustration—to get her endometriosis diagnosis Elle Courtonel was just nine years old when she first began experiencing debilitating period pain. She was diagnosed with endometriosis just weeks ago, at the age of 29, after 20 years of unexplained symptoms. The condition caused Elle to miss school regularly and feel isolated, with none of her friends starting their periods until 16. At her first GP visit, Elle was told she was too young for contraception. She returned at 13 and was put on the pill to stop her periods. She was not offered any investigations to find why she was in agonising pain every day at such a young age—but she was told the mantra fellow endometriosis patients hear: 'Just take Lactulose, painkillers and the pill.' Elle said: 'It's just been a bit of a mess really and over the last two years my health has deteriorated. 'It's got to the point where I struggle to walk upstairs, I have constant lower back pain and I've got chronic fatigue mentally. 'I also have periods of anxiety and depression. Not because of my life but because of my health.' Elle only received her diagnosis after pursuing a private ADHD assessment. While trying to improve her gut health to help her ADHD symptoms, she found that almost everything caused bad reactions. This was when her symptoms began to be taken seriously. This diagram explains how uterine tissue grows outside of the uterus, causing pain and scarring She had a fit test, a colonoscopy, ultrasounds and an MRI. 'The saddest part is I had to use ChatGPT to analyse my MRI results because there wasn't anyone to talk to and I couldn't afford to go private. It showed me that I had deep infiltrating endo at stage 4 and it was true.' 'My whole life has changed since I've had my diagnosis. Having an early diagnosis would have given me confidence, I would have changed my life quicker, I would have cut stuff out earlier, and I would have felt more empowered to make decisions.' Sofia Jade Spashett from Southampton Sofia Jade Spashett was 12 when she first had symptoms of endometriosis Twelve-year-old Sofia Jade Spashett was crying on the phone to her mum in the school toilets from the intense pain she was experiencing. It was her first period but it felt like her insides were being twisted and pulled. She knew something was not right so she went to the GP but did not get the answers she wanted—like many young women with endometriosis symptoms she was told to wait for her body to settle into its menstrual cycle. Sofia first attended A&E at 12 years old because of the intense pain and significant blood clots she was experiencing. Her mum was aware of endometriosis due to the family's history of the condition so she constantly advocated for her daughter to get taken seriously. Sofia had two MRIs, a CT scan and internal scans which all came back clear except from two ruptured cysts. She was admitted to a different hospital where she felt taken more seriously and she was diagnosed with endometriosis at 18 years old. Endometriosis affects every aspect of Sofia's life. She was in pain and was unable to go to school or work during crucial years of her life. When she has bad flare ups she has to self-catheterise due to how tense her body gets from the agony. 'Getting a diagnosis took everything out of me the constant battle to be believed, the endless appointments, the physical pain, and the emotional toll of being dismissed over and over again. 'It's exhausting and isolating, and it changes the way you see yourself and your body. But finally having an answer, even after everything, was proof that my pain was real and that I was right to keep fighting for someone to listen.' Mini from Scotland After months of pleading, Mini was sent for a scan, where an ultrasound technician suspected endometriosis Mini, 28, is five weeks post-surgery after a years-long struggle to get doctors to take her symptoms seriously. She had a long history of heavy periods and anaemia, and was initially diagnosed with Polycystic Ovary Syndrome (PCOS). But despite persistent symptoms including exhaustion and chronic body pain her concerns were repeatedly dismissed. Whenever she spoke to a GP, it was always the same conversation, she said: 'I would get my bloods done for exhaustion and body pain, it would turn out I'm anaemic. I would be put on iron supplements which upset my already sensitive stomach and so the cycle went on.' After months of pleading, she was sent for a scan, where an ultrasound technician suspected endometriosis. Mini was able to go private through her insurance to find a doctor. He found extensive endometriosis on her right ovary which had previously been mistaken for cysts and PCOS. She said: 'Turns out, my pain was very real, very serious, and not at all normal. 'I had adhesions snaking up my body all the way near my liver which was a pain I had complained about but was told it was acid reflux and to just eat healthier.' For years Mini prepared herself before every appointment to be disappointed and dismissed. But she will always remember those who helped her. 'At the end of the day, what we will remember is not that the GP didn't know what was wrong with us, but that they believed us and found a way to help us.' At least 1.5 million women with endometriosis will be supported if Jess's rule is applied to the gynaecological condition. Endometriosis UK said: 'We hope that the creation of Jess's Rule provides some comfort to the family and friends of Jessica Brady, and that it is actively embraced by GPs so that people with serious conditions do not suffer unnecessarily and get a diagnosis and appropriate help as soon as possible.' Pic 1 - Elle Courtonel who has battled endometriosis symptoms since the age of nine Pic 2 and Pic 3 - Sofia Jade Spashett after her laparoscopy surgery that confirmed her endometriosis Pic 4 - Mini, 28, who was dismissed for years before finding out she had adhesions caused by endometriosis all up her body There is an extra picture of Elle Share or comment on this article: Endometriosis diagnosis times could be reduced thanks to new NHS initiative: 'Some women are left waiting for answers for nine years' Add comment