Gynaecology services for women with suspected or confirmed endometriosis

1.1.3.

Gynaecology services for women with suspected or confirmed endometriosis should have access to:

• a gynaecologist with expertise in diagnosing and managing endometriosis, including training and skills in laparoscopic surgery
• a gynaecology specialist nurse with expertise in endometriosis
• a multidisciplinary pain management service
• a healthcare professional with an interest in gynaecological imaging
• fertility services. [2017]

Specialist endometriosis services (endometriosis centres)

1.1.4.

Specialist endometriosis services (endometriosis centres) should have access to:

• gynaecologists with expertise in diagnosing and managing endometriosis, including advanced laparoscopic surgical skills
• a colorectal surgeon with an interest in endometriosis
• a urologist with an interest in endometriosis
• an endometriosis specialist nurse
• a multidisciplinary pain management service with expertise in pelvic pain
• a healthcare professional with specialist expertise in gynaecological imaging of endometriosis
• advanced diagnostic facilities (for example, radiology and histopathology)
• fertility services. [2017]

Analgesics

1.4.1.

For women with endometriosis-related pain, discuss the benefits and risks of analgesics, taking into account any comorbidities and the woman's preferences. [2017]

1.4.2.

Consider a short trial (for example, 3 months) of paracetamol or a non-steroidal anti-inflammatory drug (NSAID) alone or in combination for first-line management of endometriosis-related pain. [2017]

1.4.3.

If a trial of paracetamol or an NSAID (alone or in combination) does not provide adequate pain relief, consider other forms of pain management and referral for further assessment. [2017]

Neuromodulators and neuropathic pain treatments

1.4.4.

For recommendations on using neuromodulators to treat neuropathic pain, see the NICE guideline on neuropathic pain in adults. [2017]

Hormonal treatments

1.4.5.

Explain to women with suspected or confirmed endometriosis that hormonal treatment for endometriosis can reduce pain and has no permanent negative effect on subsequent fertility. [2017]

1.4.6.

Offer hormonal treatment (for example, the combined oral contraceptive pill or a progestogen) to women with suspected, confirmed or recurrent endometriosis. [2017]

In September 2017, this was off-label use for some combined oral contraceptive pills or progestogens. See NICE's information on prescribing medicines.

Ultrasound

1.5.2.

Offer a transvaginal ultrasound scan to all women or people with suspected endometriosis, even if pelvic or abdominal examination is normal, to:

• identify ovarian endometriomas and deep endometriosis, including that involving the bowel, bladder or ureter
• identify or rule out other pathology which may be causing symptoms
• guide management options and enable referral to an appropriate service, depending on the ultrasound findings. See recommendations 1.5.5 to 1.5.7.
  This ultrasound scan should be organised by the person's general practice. [2024]

1.5.3.

If a transvaginal ultrasound scan is declined or not suitable for the person, consider a transabdominal ultrasound scan of the pelvis. [2017, amended 2024]

1.5.4.

Do not exclude the possibility of endometriosis if the abdominal or pelvic examination and ultrasound scan are normal, and recognise that referral may still be necessary even with a normal scan. [2017, amended 2024]

1.5.5.

Refer women or people with symptoms of, or confirmed, endometriosis to a gynaecology service (see the recommendation on gynaecology services) for further investigation and management if:

• initial treatment is not effective, is not tolerated or is contraindicated, or
• they have symptoms of endometriosis which have a detrimental impact on activities of daily living, or
• they have persistent or recurrent symptoms of endometriosis, or
• they have pelvic signs of endometriosis, but deep endometriosis is not suspected. [2017, amended 2024]

1.5.6.

Refer women or people to a specialist endometriosis service (see the recommendation on specialist endometriosis services [endometriosis centre]) if they have suspected or confirmed:

• endometrioma, or
• deep endometriosis, including that involving the bowel, bladder or ureter, or
• endometriosis outside the pelvic cavity. [2017, amended 2024]

1.5.7.

Refer young women or people (aged 17 and under) with suspected or confirmed endometriosis to a paediatric and adolescent gynaecology service or specialist endometriosis service (endometriosis centre) for further investigation and management. [2017, amended 2024]

Serum CA125

1.5.8.

Do not use serum CA125 to diagnose endometriosis. [2017]

MRI

1.5.9.

Consider specialist transvaginal ultrasound scan or pelvic MRI scan to diagnose deep endometriosis and assess its extent. [2107, amended 2024]

1.5.10.

Ensure that specialist transvaginal ultrasound scans and pelvic MRI scans are planned and interpreted by a healthcare professional with specialist expertise in gynaecological imaging. [2017, amended 2024]

Diagnostic laparoscopy

Also refer to the section on surgical management and the section on management if fertility is a priority.

1.5.11.

Consider laparoscopy to diagnose endometriosis in women or people with suspected endometriosis, even if the ultrasound scan or MRI scan was normal. [2017, amended 2024]

1.5.12.

For women or people with suspected deep endometriosis consider a specialist pelvic ultrasound scan or MRI scan before an operative laparoscopy. [2017, amended 2024]

1.5.13.

During a diagnostic laparoscopy, a gynaecologist with training and skills in laparoscopic surgery for endometriosis should perform a systematic inspection of the pelvis and record the findings (including normal and abnormal areas and intra-operative imaging). [2017, amended 2024]

1.5.14.

During a diagnostic laparoscopy, consider taking a biopsy of suspected endometriosis:

• to confirm the diagnosis of endometriosis (be aware that a negative histological result does not exclude endometriosis)
• to exclude malignancy if an endometrioma is treated but not excised. [2017]

1.5.15.

If a systematic laparoscopy with recorded findings of normal and abnormal areas and intra-operative imaging is performed and is normal, explain to the woman or person that it is unlikely that they have endometriosis, and offer alternative management of their symptoms. [2017, amended 2024]

Combination treatments

1.9.7.

After laparoscopic excision or ablation of endometriosis, consider hormonal treatment (with, for example, the combined oral contraceptive pill), to prolong the benefits of surgery and manage symptoms. [2017]

In September 2017, this was off-label use for some hormonal treatments (including some combined oral contraceptive pills). See NICE's information on prescribing medicines.

Hysterectomy in combination with surgical management

1.9.8.

If hysterectomy is indicated (for example, if the woman has adenomyosis or heavy menstrual bleeding that has not responded to other treatments), excise all visible endometriotic lesions at the time of the hysterectomy. [2017]

1.9.9.

Perform hysterectomy (with or without oophorectomy) laparoscopically when combined with surgical treatment of endometriosis, unless there are contraindications. [2017]

1.9.10.

For women thinking about having a hysterectomy, discuss:

• what a hysterectomy involves and when it may be needed
• the possible benefits and risks of hysterectomy
• the possible benefits and risks of having oophorectomy at the same time
• how a hysterectomy (with or without oophorectomy) could affect endometriosis symptoms
• that hysterectomy should be combined with excision of all visible endometriotic lesions
• endometriosis recurrence and the possible need for further surgery
• the possible benefits and risks of hormone replacement therapy after hysterectomy with oophorectomy (also see the NICE guideline on menopause).[2017]

Why this is important

Pain is one of the most debilitating symptoms of endometriosis. Endometriosis-related pain can be acute or chronic, and can adversely affect the woman's quality of life, ability to work, and can affect partners and their families.

Pain management programmes have been found to be effective in managing chronic pelvic pain, and can improve quality of life. However, it is unclear how much of this small evidence base can be generalised to women with endometriosis for which evidence is lacking. Furthermore, pain management programmes have not been compared with other treatments available for endometriosis. Pain management programmes promote self-management and are often provided in the community.

If found to be effective for endometriosis, pain management programmes would provide an additional or alternative treatment option for women experiencing endometriosis-related pain. Groups of particular interest are women for whom hormonal and surgical options have been exhausted, women who would prefer an alternative to a pharmacological or surgical approach, and women who may be prioritising trying to conceive.

Why this is important

Isolated peritoneal endometriosis can be an incidental finding in women who may or may not experience pain or other symptoms.

Research is needed to determine whether laparoscopic treatment of isolated peritoneal endometriosis in women with endometriosis-related pain results in a clinical and cost-effective improvement in symptoms.

The current literature does not provide a clear answer because the stage of endometriosis is often not sufficiently clearly defined in research studies, and the treatment modalities used are multiple and varied. The resultant amalgamation of various stages of endometriosis and variable treatment modalities leads to loss of certainty of outcome in this specific group of women.

Establishing whether treating isolated peritoneal endometriosis is cost effective is important, because this forms a large part of the workload in general gynaecology, and uses considerable resources.

Why this is important

Endometriosis is a long-term condition that can cause acute and chronic pain, and fatigue. It has a significant and sometimes severe impact on the woman's quality of life and activities of daily living, including relationships and sexuality, ability to work, fertility, fitness and mental health.

Supporting self-management is critical to improving quality of life for women living with endometriosis. In order to successfully self-manage the condition, women need evidence-based, easily accessible information about the condition and ways of managing it that support surgical and medical treatment. However, no high-quality research was identified on the effectiveness of lifestyle interventions such as diet or exercise and other nonmedical treatments in reducing pain, fatigue and other symptoms.

Studies should aim to provide evidence-based options to support self-management of endometriosis. This would improve the quality of life of women with endometriosis, enabling them to manage pain and fatigue, and reducing the negative impact on their career, relationships, sex lives, fertility, and physical and emotional wellbeing.

Why this is important

This guideline has identified that women with endometriosis and their partners feel that information and support is not always provided in the way that best meet their needs. However, the direct effectiveness of different types or formats of information and support interventions on measurable outcomes such as health-related quality of life and level of function (for example, activities of daily living) have not been tested. Good practice in this area in non-specialist and specialist settings can improve satisfaction with the care provided. It may also improve quality of life and positively affect relationships between healthcare professionals and the woman with endometriosis, as well as the woman's personal family relationships.

Why the committee made the recommendations

Based on their knowledge and experience the committee agreed that a family history of endometriosis should be taken into account when assessing a person with signs or symptoms suggesting endometriosis, as there was an increased likelihood of endometriosis if there was a positive history in a first-degree relative.

Based on stakeholder feedback and information in the 2018 All Party Parliamentary Report on endometriosis that many ethnic minority groups do not feel believed when reporting their symptoms, and based on the committee's knowledge and expertise, a recommendation was added to highlight the need take diversity into account when assessing pain symptoms.

How the recommendations might affect practice

Knowling that there is a family history of endometriosis may increase the suspicion of endometriosis, which may lead to investigations such as ultrasound being used sooner, and consequently an earlier diagnosis.

Increased awareness of the need to take diversity issues into account when assessing pain symptoms will help minority groups feel that their pain symptoms are believed.

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Why the committee made the recommendations

Based on the committee's knowledge and experience, an additional recommendation has been added to clarify that initial pharmacological treatment, a non-specialist ultrasound and referral do not need to happen sequentially and can happen in parallel so that the overall pathway of care is more timely.

How the recommendations might affect practice

Why the committee made the recommendations

There was no evidence of an important difference in the pregnancy rate between laparoscopic cystectomy and laparoscopic ablation and drainage of ovarian endometriomas larger than 3 cm, but drainage and ablation may lead to increased ovarian reserve (measured in terms of anti-Mullerian hormone levels, ovarian volume and antral follicle count) compared to laparoscopic cystectomy, so ablation and drainage has been included as an option if ovarian reserve is a priority.

Based on the committee's knowledge and experience and stakeholder feedback, the definition of deep endometriosis has been clarified to state that it includes endometriosis involving the bowel, bladder or ureter but is not limited to these sites, so that people are not excluded from treatment inappropriately. The need to discuss that deep endometriosis can impact on pregnancy outcomes has been added to the topics to discuss to provide a broader consideration of the benefits and risks of surgery.

There was some limited evidence of increased rates of clinical pregnancy and live birth with combinations of hormonal treatments with laparoscopic surgery compared to surgery alone, but the evidence was mixed, with other evidence showing no difference. As there was mixed evidence, the committee made a recommendation for research on hormonal treatments. The committee clarified that this recommendation applied to hormonal treatment alone or in combination with surgery.

How the recommendations might affect practice

The inclusion of ablation and drainage as a treatment option is not expected to have a resource impact as the cost of the 2 treatment options (cystectomy and ablation/drainage) are similar. This change will allow the option of a treatment which may have less of an impact on ovarian reserve.

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