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NHS Launches Groundbreaking Initiative to Slash Endometriosis Diagnosis Times

Published 3 hours ago6 minute read
Precious Eseaye
Precious Eseaye
NHS Launches Groundbreaking Initiative to Slash Endometriosis Diagnosis Times

Endometriosis UK is championing a new initiative called 'Jess's Rule,' a critical three-strikes-and-rethink approach designed to significantly accelerate the diagnosis of endometriosis, a debilitating gynaecological condition. On average, individuals suffering from endometriosis wait nearly nine years to receive a diagnosis after their initial GP visit, leaving millions of women in the UK enduring pain in silence and feeling their symptoms are disbelieved. A comprehensive 2024 report by Endometriosis UK highlighted the severity of this issue, revealing that 47% of surveyed individuals reported visiting a GP ten or more times before finally being diagnosed.

Jess's Rule, which was officially introduced on September 23, 2025, mandates that General Practitioners (GPs) must "reflect, review, and rethink" a patient's case if they present with the same or escalating symptoms three times without a clear diagnosis or improvement in their condition. This vital initiative is rooted in a tragic event, named in memory of Jessica Brady, who at 27 years old, succumbed to stage four breast cancer after her symptoms were dismissed over twenty times by her GP, receiving a terminal diagnosis just three weeks before her death.

Endometriosis affects approximately 1.5 million women in the UK who have received a formal diagnosis, with potentially millions more living with the condition undiagnosed. It involves the growth of endometrial tissue, which is similar to the lining of the uterus, outside of the uterus itself—often on organs like the cervix, bladder, and ovaries. This rogue tissue thickens and collects throughout each menstrual cycle. When a woman experiences her period, this misplaced tissue also attempts to break down, leading to inflammation and the formation of scar tissue. This scar tissue can bind to and stiffen organs, causing excruciating pulling sensations and sharp, shooting pains. The pain can be so severe that it becomes unbearable for some, and in some cases, the build-up of scar tissue can block fallopian tubes or disrupt the hormonal balance necessary for ovulation, making conception impossible.

The far-reaching impact of endometriosis on a woman's quality of life is immense, often hindering her ability to work, attend school, or engage in social activities. Tragically, there is currently no known cure for endometriosis. Treatment options are primarily focused on managing pain symptoms or performing keyhole surgery to remove the misplaced endometrial tissue and loosen scar tissue. In the most severe and intractable cases, a full hysterectomy may be considered as a last resort.

In light of the launch of Jess's Rule, the Daily Mail shared the poignant accounts of three women who endured years of struggle to secure an endometriosis diagnosis. Their individual journeys, though distinct, collectively embody a shared hope that this new initiative will pave the way for earlier and more accurate diagnoses for other women facing similar challenges.

Elle Courtonel from Leicestershire experienced debilitating period pain from the tender age of nine. It took her a staggering twenty years—marked by immense pain and frustration—to finally receive her endometriosis diagnosis at 29, just weeks ago. The condition led to regular school absences and profound isolation, as her friends did not start their periods until much later. During her first GP visit, Elle was told she was too young for contraception. At 13, she was prescribed the pill to suppress her periods, but no investigations were offered to understand the cause of her agonising daily pain. Instead, she was given the familiar mantra heard by many endometriosis patients: 'Just take Lactulose, painkillers and the pill.' Elle described her health journey as "a mess," noting a significant deterioration over the last two years, leaving her struggling to walk upstairs, suffering constant lower back pain, chronic mental fatigue, and episodes of anxiety and depression stemming from her health. Her diagnosis ultimately came after pursuing a private ADHD assessment, during which attempts to improve her gut health revealed severe reactions to almost everything, finally prompting her symptoms to be taken seriously. After undergoing a fit test, colonoscopy, ultrasounds, and an MRI, Elle resorted to using ChatGPT to analyse her MRI results due to a lack of affordable private consultations, which confirmed she had deep infiltrating stage 4 endometriosis. She reflected that an early diagnosis would have provided her with confidence, allowed her to make life changes sooner, and empowered her to make crucial decisions.

Sofia Jade Spashett of Southampton began experiencing endometriosis symptoms at just twelve years old. During her first period, she found herself crying on the phone in the school toilets due to intense pain, feeling as though her insides were being twisted. Recognizing something was amiss, she visited her GP, only to be advised, like many young women, to wait for her body to adjust to its menstrual cycle. Sofia's intense pain and significant blood clots led her to A&E at 12. Her mother, aware of a family history of endometriosis, tirelessly advocated for her daughter to be taken seriously. Despite undergoing two MRIs, a CT scan, and internal scans—all of which came back clear except for two ruptured cysts—Sofia's pain persisted. She was eventually admitted to a different hospital where she felt more believed, leading to her endometriosis diagnosis at 18. The condition profoundly impacted Sofia's life, preventing her from attending school or working during crucial formative years. During severe flare-ups, she is forced to self-catheterise due to the extreme tension her body experiences from the agony. She described the diagnostic journey as exhausting and isolating, remarking, "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." However, finally having an answer validated her pain and her fight for recognition.

Mini, 28, from London, is now five weeks post-surgery after years of struggling to get doctors to acknowledge her severe symptoms. She had a long history of heavy periods and anaemia and was initially misdiagnosed with Polycystic Ovary Syndrome (PCOS). Despite persistent symptoms like exhaustion and chronic body pain, her concerns were repeatedly dismissed by GPs, who typically ran blood tests, confirmed anaemia, and prescribed iron supplements that exacerbated her sensitive stomach. After months of persistent pleading, Mini was finally sent for a scan, where an ultrasound technician first suspected endometriosis. She then sought private medical care through her insurance, where a doctor discovered extensive endometriosis on her right ovary, which had previously been mistaken for cysts and PCOS. Mini vividly recalled her experience, stating, "Turns out, my pain was very real, very serious, and not at all normal." She also learned she had adhesions snaking up her body all the way near her liver, a pain she had previously complained about but was told it was merely acid reflux and advised to eat healthier. For years, Mini braced herself for disappointment and dismissal before every appointment. Reflecting on her journey, she emphasised the enduring impact of those who did help, stating, "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."

Endometriosis UK expresses profound hope that Jess's Rule will significantly support the at least 1.5 million women living with endometriosis. The charity stated, "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."

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