What are the NICE guidelines and how do they affect you?
NICE (National Institute for Health and Care Excellence) is an independent body that is part of the NHS. They provide recommendations and health standards based on evidence, to create guidelines for healthcare in the United Kingdom, which covers England, Wales, and Northern Ireland.
The Department of Health and Social Care decides which topics and conditions NICE should create guidelines for. NICE then sets up a discussion panel made up of experts in the field for the chosen topic. This includes patients, carers and other stakeholders. Following their publication, these guidelines can be updated based on new research and recommendations. Members of the NHS, for example healthcare physicians, clinicians and carers, take these guidelines into account to make decisions on patient treatment.
As a patient in the UK, you have a legal right to a drug or treatment recommended by NICE, and you have the right for it to be administered or provided by the NHS.
What endometriosis symptoms are in the NICE guidelines?
- Chronic pelvic pain
- Period-related pain (dysmenorrhoea) that affects daily life and quality of life
- Deep pain during or after sexual intercourse
- Period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements (going for a poo)
- Period-related or cyclical urinary symptoms, in particular, blood in urine or painful urination (going to pee)
- Infertility in addition to one of the above.
NICE recommends that patients keep a diary of pain and symptoms experienced (doctors will often suggest three months) to help aid discussions when they meet with their healthcare provider e.g. their GP, gynaecologist, consultant or specialist.
What does NICE recommend in suspected endometriosis?
When healthcare providers, initially GPs, suspect endometriosis, they are advised by NICE to perform the following:
- Begin a short trial (often three months) of non-steroidal anti-inflammatory medication (NSAIDs) like ibuprofen for pain management.
- Offer a pelvic and abdominal examination to identify visible signs of endometriosis such as abdomen enlargement, tender nodes in the vagina, and any visible lesions in the vagina.
- Refer the patient to a gynaecology service if they have persistent symptoms or initial management is not effective or tolerated. They can perform special imaging tests to further investigate.
- Refer the patient to a gynaecological specialist if they have suspected deep endometriosis or lesions outside the pelvic cavity.
- Refer the patient, if under the age of 17, to a paediatric and adolescent gynaecology service.
What can I expect from my GP?
Stage 1: Initial examination
The NICE guidelines state that your physician (likely your GP if this is your first onset of symptoms) should suspect endometriosis if patients have one or more symptoms on the above symptom list (see Endometriosis: The symptoms recognized by NICE). The GP should offer an external physical exam either at the first visit or shortly after. This can be a pelvic and/or an abdominal exam.
They state that pelvic exams may not be suitable for all groups, for example those with learning disabilities, young people under 17 years old, or young people that have never been sexually active. Abdominal exams would be recommended as an alternative.
In an abdominal exam, the physician will touch your stomach to observe any tender or sore areas and apply pressure to different abdominal areas to feel the presence of any masses. An abdominal exam is performed before the pelvic exam.
In a pelvic exam, also known as vaginal exam, the physician will keep one hand on your tummy and use their fingers to examine your vaginal cavity. The physician will feel for any scars or masses in your vagina and cervix which might indicate inflammation. If the abdominal and pelvic exams are normal and the patient still expresses symptoms of endometriosis, the NICE guidelines recommend moving to the next stage, which is starting a treatment plan.
Stage 2: Treatment plans
The NICE guidelines recommend starting a short trial of NSAIDs (typically three months) for pain management. Your GP can also prescribe a short trial of hormonal treatments (typically the contraceptive pill or progesterone pills), which can be used alone or in combination with NSAIDs.
After this trial period, if you do not feel any relief from your pain symptoms, the NICE guidelines suggest that your GP refer you to a gynaecologist, adolescent gynaecologist, or endometriosis specialist. This will transfer you out of primary care and into specialty care.
Stage 3: Further testing and surgery
Once at the gynaecologist, the NICE guidelines recommend they perform transvaginal or transabdominal ultrasounds to continue to investigate symptoms. Even if the pelvic/abdominal examinations and ultrasounds are normal, the patient should continue to be assessed with other tests. Blood tests (CA 125) are NOT recommended as a diagnostic test.
If pelvic MRI tests are performed, they should not be used as the only diagnostic method; it should only be used to assess the extent of deep endometriosis before a surgery is performed.
If deep endometriosis is suspected involving the bladder, bowels, or uterus, the NICE guidelines recommend referrals to a specialist endometriosis service. These services have access to gynaecologists, physicians, and nurses with expertise in diagnosing, managing, testing, and performing surgery on patients with endometriosis.
The only diagnosis method that NICE uses to 100% confirm endometriosis is a surgical laparoscopy. As well as being used to diagnose endometriosis, a laparoscopy is also used to treat it. In this method, endometriosis lesions can be removed, which can help alleviate your pain symptoms.
Updates to the guidelines
In November 2022, NICE agreed to update their guidelines concerning diagnosis and surgical management of endometriosis. The guidelines were last updated in 2017, so this milestone represents a huge accomplishment for advancements in endometriosis and for patient care. These updates are expected to begin in 2023.
Patients with endometriosis, menstrual health advocates, and campaigners have lobbied for years to raise awareness and funding for the disease, arguing that the guidelines lacked information on non-pharmacological pain management, endometriosis outside the pelvic cavity, and how it affects mental health. This propelled professionals and practitioners to create new recommendations and guidelines surrounding diagnosis and surgery management, with a focus on fertility. The updates to the guidelines demonstrate how critical it is to continue to advocate for your views and concerns, making sure that key issues are adequately addressed, funded, and researched.
The updates will include:
- Encouraging specialist physicians to perform more imaging techniques to diagnose deep endometriosis
- Any new drug recommendations
- Any new surgery recommendations when fertility is prioritised.
Although NICE recognizes that non-pharmacological pain management is important for patients, they still do not offer any advice or recommendations. However, they do state that they will be working with the National Institute for Health and Care Research to be studying this further. More information on the updated NICE guidelines can be found here.
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