Endometriosis affects 1 in 10 women of reproductive age, yet it takes an average of 8 years to diagnose. For many, this lengthy wait means years of unnecessary suffering and worsening symptoms. Recent reports by NCEPOD and Endometriosis UK highlight the scale of the issue, compounded by growing pressures on gynaecology services – waiting lists have risen by a third in the UK since 2022.
Delayed care has significant consequences. Research from the Royal College of Obstetricians and Gynaecologists (RCOG) found that a quarter of the women with endometriosis symptoms have had to visit A&E, with over 10% going on to require emergency interventions like blood or iron transfusions.
At Curaleaf Clinic, we see firsthand how endometriosis affects our patients. This is the fastest growing condition group at our clinic, with patients coming to us when traditional pain relief has failed. The number of endometriosis patients has doubled each year since 2020. With current trends, we expect this figure to double again in 2024.
Key Updates in the 2024 NICE Guidelines on Endometriosis
The updated 2024 NICE guidelines aim to tackle diagnostic delays through earlier symptom recognition, improved diagnostic tools, and streamlined care pathways.
Key updates include:
- Family History Inquiry: Healthcare providers are now encouraged to ask about family history, as a first-degree relative with endometriosis increases a patient’s risk.
- Early Ultrasound: Patient with suspected endometriosis should be offered an ultrasound, even if physical examination appears normal. This my help improve early identification of deeply embedded or hard-to-detect lesions, allowing for quicker diagnosis and timely referral to specialist care if needed.
- Alternative Diagnostic Tools: Transvaginal ultrasound is recommended over MRI for its accessibility and ability to detect conditions like ovarian endometriomas or deep endometriosis in the bowel, bladder, or ureter. This supports early diagnosis and helps rule out other possible causes, allowing for more informed management and referral decisions.
- Clearer Referral Protocols: Patients meeting certain criteria, such as confirmed endometriomas or deep endometriosis, must now be referred to specialist care without delay. This leads to faster diagnoses and improved treatment outcomes. The change also recommends that patients should be referred to specialist centres whilst management of pain and investigations are arranged, rather than waiting for their outcomes. Again, this should improve the speed at which patients are seen.
- Clearer Care Pathways: Improved information ensures patients receive better guidance and understand what to expect during their care journey.
- Recognising Pain Diversity: Acknowledging that pain is personal and may be communicated both verbally and non-verbally. This can be expressed differently based on cultural background, religious belief, socioeconomic status, or neurodiverse conditions.
Dr Simon Erridge, Research Director at Curaleaf Clinic, commented on NICE’s updated guidelines:
“It’s encouraging to see NICE taking affirmative steps to address the challenges those in the UK face in securing an endometriosis diagnosis. However, it’s taken far too long. While this progress is positive, questions remain about the efficacy and availability of treatments. At our clinic, we’ve seen patients seeking effective endometriosis pain management double between 2020 and 2023, highlighting the urgent need for effective solutions.
Crucially, the new guidance clarifies that initial pharmacological treatment, a non-specialist ultrasound, and referral can now happen simultaneously, speeding up the care pathway. As the diagnosis of endometriosis in the UK takes an average of 7.5 years from the onset of symptoms, this is a significant step forward.
Furthermore, the guidance acknowledges that many ethnic minority groups do not feel believed when reporting their symptoms. The committee’s recommendation to consider diversity when assessing pain is essential for ensuring equitable care.”
Candice McKenzie, Curaleaf Clinic patient and co-founder of the Endo Warriors West Lothian shared her perspective:
“The updated NICE guidelines on endometriosis are welcomed and represent a positive step towards improved care, offering a clearer pathway to diagnosis, personalised treatment, and a deeper understanding of the condition. However, as a community we must acknowledge the deeply worrying numbers reported by The Royal College of Obstetricians and Gynaecologists (RCOG) who confirm there are over 763,694 patients waiting for gynaecology hospital care. So, while the update is appreciated, we must see a major improvement in the care and management of those with and awaiting a diagnosis.
Endometriosis is a progressive condition, given waiting time and lack of specialised care for those with endometriosis I would personally like to see improved pain management options alongside dual decision making and, importantly, an understanding of treatment options, side effects and desired outcomes for the patient, which lacks consistency currently due to the shortage of specialised care within the NHS.
Its vitally important endometriosis is seen as a full body disease with a multidisciplinary approach across the board, we need dots joined in a timely manner to have some semblance of life, a quality life and mental wellbeing.
Early diagnosis is key for all.”
How is Endometriosis Currently Diagnosed?
Endometriosis is diagnosed through a combination of medical history, symptom assessment, and imaging tests. Doctors may begin with a pelvic exam to check for abnormalities, followed by an ultrasound or MRI to identify signs of the condition. In many cases, a definitive diagnosis requires a laparoscopy – a minimally invasive surgery where a small camera allows doctors to view and biopsy affected tissue.
However, the updated NICE guidelines emphasise earlier use of transvaginal ultrasounds, which can detect deep or hidden lesions missed during routine exams. This aims to improve referral pathways to specialist care, ensuring patients receive a faster and less invasive diagnosis.
Why Does It Take So Long to Diagnose Endometriosis?
On average, it takes 8 years to diagnose endometriosis. This delay stems from various challenges: symptoms like painful periods or pelvic pain are often dismissed as normal, and the condition’s symptoms can overlap with others, such as IBS. Limited awareness among both patients and healthcare providers further complicates early identification. Inadequate diagnostic tools and lengthy waits for specialist referrals also contribute to the problem.
Endometriosis Support
Endometriosis remains a challenging condition, but progress is being made. The updated NICE guidelines offer hope for faster diagnoses and better care, helping to reduce the burden on those living with this debilitating condition. For further support and resources, visit Endometriosis UK, the UK’s leading charity dedicated to supporting those affected by endometriosis.
For those struggling to manage their symptoms with traditional treatments, medical cannabis may be an alternative option to explore. At Curaleaf Clinic, we have seen an increasing number of endometriosis patients turning to medical cannabis for their pain and associated symptoms. To learn more visit our ‘Getting Started’ page.
