For Medics
Endometriosis often presents with symptoms similar to that of an array of other conditions from chronic back pain to irritable bowel syndrome (IBS).
This can cause confusion when it comes to diagnosis.
However, the average wait time of 8-10 years for endo is also caused by a lack of knowledge and awareness by medics.
This page seeks to bring you the latest research and news on the physical and mental health issues caused by endometriosis and includes best practice guidance, so that together, we may learn more about this most troubling condition.
Diagnosis delays, NCEPOD and a primary care perspective
This expert perspective presents statistics on diagnosis and treatment of endometriosis in the UK, along with Dr Anita Sharma’s thoughts on the applicability of updated NICE guidelines in primary care practice, and further steps that are needed to improve care for patients with endometriosis.
Delays to diagnosis and treatment
An NCEPOD (National Confidential Enquiry into Patient Outcome and Death) report published on 11 July 2024 audited the care provided to 941 patients with surgically confirmed endometriosis.3 The report found that 58% of women had multiple GP visits before investigations were undertaken or treatment was initiated. This may be in part because there are no specific clinical findings to make a diagnosis of endometriosis, so a GP must often consider other conditions that have similar presenting symptoms.
As it stands, just under 600,000 women are on the waiting list for endometriosis treatment in England, where the NHS target is for 92% of patients to be treated within 18 weeks of referral. Before the pandemic, 84% of patients were treated within the target time, but now almost half of women have been waiting more than 18 weeks. Figures from July 2024 showed that 27,671 women had been waiting for more than a year for treatment.
Around 28% of patients in the NCEPOD report sought care in the private sector because of delays between GP referral and specialist review, creating inequities in access.
The NCEPOD report highlighted problems not only with the diagnosis and treatment of endometriosis, but also with lack of coordination between primary and secondary care and difficulty in accessing supportive services.3 For example, only 22 of 46 eligible patients were correctly referred to a British Society for Gynaecological Endometriosis (BSGE) accredited specialist secondary care centre (of which there are 63). These centres have specialists in complex pain, urology, colorectal surgery, and fertility, and care for women with severe endometriosis – defined as deep disease involving local organs or disease outside the pelvis.
Aspirations to improve care
In light of this situation, NICE guidelines on diagnosis and management of endometriosis were updated in November 2024. These recommendations reflect an aspiration to speed up diagnosis and treatment.
Professor Jonathan Benger, chief medical officer and interim director of the Centre for Guidelines at NICE said of the updated guideline.
“This guideline will help healthcare professionals to detect endometriosis early, to close the symptom to diagnosis gap and ensure more timely treatment.”
Specifically, the updated NICE guidelines state that GPs should offer a transvaginal ultrasound to all patients with suspected endometriosis, even if pelvic or abdominal examination is normal. This will help to identify ovarian endometriomas and deep endometriosis, including endometriosis involving the bowel, bladder or ureter. It will also help to spot – or rule out – other pathology that may be causing symptoms, as well as guiding management and referral decisions.
The guideline also advises that patients with symptoms of endometriosis should be referred to secondary care where initial treatment is not effective, tolerated or is contraindicated and it is having a detrimental impact on their daily lives. Those with persistent or recurrent symptoms would also be eligible for referral, as well as those who have pelvic signs, but deep endometriosis is not suspected.
Primary care perspective
In my view, gynaecology care has long been neglected because there is no QOF in any of the gynaecological areas. As such, primary care is disincentivised from reviewing the care pathway, providing a management plan and conducting regular follow ups.
Having said this, in my experience as a GPwSI in gynaecology (and triager of gynaecology referrals in my area), almost all GPs are already providing the care outlined in the updated guidelines. That is, offering a transvaginal ultrasound scan to women with suspected endometriosis and working to the referral recommendations. However, patients are not being seen because there is a lack of specialists, resulting in the delays to treatment outlined in previous pages.
This has a significant impact on primary care because – despite providing care as outlined in the guidelines – GPs are left with the difficult task of supporting women with endometriosis during their (often lengthy) wait for a gynaecology appointment.
RCGP Chair, Professor Kamila Hawthorne, said:
“GPs understand how hard living with a gynaecological condition can be, and how frustrating and concerning it is to have to wait months or even years for the right specialist care. GPs and our teams play a key role in managing our patients’ conditions while they are on waiting lists, and it is deeply worrying to see their health deteriorating, becoming more complex to treat, and affecting their quality of life while they wait”.
Despite providing care as outlined in the guidelines, GPs are left with the difficult task of supporting women with endometriosis waiting for a gynaecology appointment
Suggestions for improvements
Long-term, sustained funding is needed to address the systemic issues relating to endometriosis care. Improving the health of women is to the benefit of the individual patients, and society as a whole. Below I’ve outlined my suggestions for improvements
● Awareness training and education
Awareness training and education on diagnosing suspected endometriosis and managing it in the community are paramount, but require collaborative support and advice from secondary care specialists. In my role as Chair of Endometriosis Awareness North, I help to organise webinars and face-to-face meetings with endometriosis specialists in my area. This can also benefit primary care by providing advice on how to support and care for women who are waiting for diagnosis or treatment.
● Creation of a gynae hub
I believe that the delays in accessing specialist care can only be resolved if there is a ‘gynae hub’ in every area. Each hub would include a team of GPs with extended roles in gynaecology, specialist endometriosis consultants, and advanced nurse practitioners, and would have ultrasound facilities. All referrals for suspected endometriosis would go to this gynae hub, which would provide timely diagnosis, management and follow up.
● A regional collaborative network
A collaborative network of regional hubs would offer access to pain management, fertility and psychological support, research, and education.
● QOF indicators for endometriosis
Including endometriosis in QOF would incentivise improvements to timely care for patients with this condition.
● Urgent support for those on waiting lists
An urgent support package is needed for those currently on waiting lists for endometriosis diagnosis and treatment.
Key learning points
● Around 1.5 million women in the UK are living with endometriosis and it takes on average 8–10 years to get a diagnosis.
● Some 58% of women with endometriosis have multiple GP visits before investigations are undertaken or treatment is initiated.
● Some 28% of patients seek care in the private sector because of delays between GP referral and specialist review, creating inequities in access.
● NICE guidelines state that GPs should offer a transvaginal ultrasound to all patients with suspected endometriosis, even if pelvic or abdominal examination is normal.
● Awareness training and education on diagnosing suspected endometriosis and managing it in the community are paramount, but require collaborative support and advice from secondary care.
The common thread linking endometriosis, menopause and pelvic floor dysfunction
`I had many perimenopausal symptoms, saw so many different doctors. Not one of them made the connection’.
`Prior to this diagnosis [of endometriosis], I know that I been back and forth to my GPs countless times. I felt like I was being constantly fobbed off.’
Endometriosis, menopause and uro-gynaecological problems such as prolapse and incontinence affect many people in the UK.
There is some symptom overlap, and some individuals may encounter all three
conditions – but the main commonality is not a sign or symptom. It’s something less visible, and was discussed in a webinar forming part of our Tackling Health Inequalities campaign.
At the webinar,Dr Sharma joined Dr Louise Newson and Mr Abdelmageed Abdelrahman as we talked about the common theme of women not being heard. This is a health inequality in its own right.
Why aren’t women heard? It appears that sometimes healthcare professionals aren’t asking the right questions, or sometimes women don’t come forward, or sometimes women just aren’t listened to when they do seek help. It takes on average 7–8 years for a diagnosis of endometriosis to be made – quite shocking when you consider that 1.5 million women experience it.
In the recorded version of our webinar, which is free to view on MIMS Learning for a limited time, our speakers revealed their passion and commitment to making a difference for women by educating healthcare professionals to ensure that the right
questions are asked, that these common conditions are considered, and that referrals and interventions are timely.
The patient viewpoint
The clinician speakers were joined by Siobhan Kennett, a patient representative who has had surgery for endometriosis after `years’ of presenting to her GP with heavy and painful periods, chronic fatigue, abdominal bloating, frequent urination, and being offered only the contraceptive pill and antidepressants. After a scan revealed endometriosis on her ovaries, she waited six months to see a gynaecologist, and was told it would be 18 months before she could have surgery.
Siobhan concluded: `Between experiencing my early symptoms and eventually
receiving surgical treatment and a diagnosis for endo, it was about 10 years.’
Her experience is borne out by the NCEPOD report into endometriosis published this summer, which Dr Sharma was involved with.
This report, Endometriosis: A long and painful road, found that 58% of patients surveyed had multiple visits to the GP before any investigations were undertaken or treatment initiated.
Dr Sharma presented a key slide for GPs listing symptoms to look out for. She said:
`I’d like you to put that slide on your desktop, share it with your colleagues so that when you see a patient – even a young woman aged 17 and under – presenting with these symptoms, just think of endo.’
Thoracic endometriosis
Endometriosis Awareness North founder Dr Anita Sharma is one of the compilers of a new module on what lay people call, “endo lung.”
Written in conjunction with Dr Zaibun Khan (Royal Lancaster Infirmary) and Mr Kenneth Ma (Consultant, St Mary’s Hospital, Manchester), the learning tool examines this rare and yet painful form of endometriosis.
Following completion, professionals will be able to:
· Recall the most common signs and symptoms of thoracic endometriosis
· Outline the relationship between pelvic endometriosis and thoracic endometriosis
· Explain the pathophysiology of thoracic endometriosis
· Describe the treatment options
To learn more and subscribe, go to https://www.mimslearning.co.uk/courses/case-study-thoracic-endometriosis