Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off‑label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Organisation of care

1.1.1 Set up a managed clinical network for women with suspected or confirmed endometriosis, consisting of community services (including GPs, practice nurses, school nurses and sexual health services), gynaecology services and specialist endometriosis services (endometriosis centres).

1.1.2 Community, gynaecology and specialist endometriosis services (endometriosis centres) should:

  • provide coordinated care for women with suspected or confirmed endometriosis

  • have processes in place for prompt diagnosis and treatment of endometriosis, because delays can affect quality of life and result in disease progression.

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.

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.

1.2 Endometriosis information and support

1.2.1 Be aware that endometriosis can be a long-term condition, and can have a significant physical, sexual, psychological and social impact. Women may have complex needs and require long-term support.

1.2.2 Assess the individual information and support needs of women with suspected or confirmed endometriosis, taking into account their circumstances, symptoms, priorities, desire for fertility, aspects of daily living, work and study, cultural background, and their physical, psychosexual and emotional needs.

1.2.3 Provide information and support for women with suspected or confirmed endometriosis, which should include:

  • what endometriosis is

  • endometriosis symptoms and signs

  • how endometriosis is diagnosed

  • treatment options

  • local support groups, online forums and national charities, and how to access them.

1.2.4 If women agree, involve their partner (and/or other family members or people important to them) and include them in discussions. For more guidance on providing information to people and involving family members and carers, see the NICE guideline on patient experience in adult NHS services.

1.3 Endometriosis symptoms and signs

1.3.1 Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:

  • chronic pelvic pain

  • period-related pain (dysmenorrhoea) affecting daily activities and quality of life

  • deep pain during or after sexual intercourse

  • period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements

  • period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine

  • infertility in association with 1 or more of the above.

1.3.2 Inform women with suspected or confirmed endometriosis that keeping a pain and symptom diary can aid discussions.

1.3.3 Offer an abdominal and pelvic examination to women with suspected endometriosis to identify abdominal masses and pelvic signs, such as reduced organ mobility and enlargement, tender nodularity in the posterior vaginal fornix, and visible vaginal endometriotic lesions.

1.3.4 If a pelvic examination is not appropriate, offer an abdominal examination to exclude abdominal masses.

1.4 Referral for women with suspected or confirmed endometriosis

1.4.1 Consider referring women to a gynaecology service for an ultrasound or gynaecology opinion if:

  • they have severe, persistent or recurrent symptoms of endometriosis

  • they have pelvic signs of endometriosis or

  • initial management is not effective, not tolerated or is contraindicated.

1.4.2 Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter.

1.4.3 Consider referring young women (aged 17 and under) with suspected or confirmed endometriosis to a paediatric and adolescent gynaecology service, gynaecology service or specialist endometriosis service (endometriosis centre), depending on local service provision.

1.5 Diagnosing endometriosis

1.5.1 Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation.

Ultrasound

1.5.2 Consider transvaginal ultrasound:

  • to investigate suspected endometriosis even if the pelvic and/or abdominal examination is normal

  • to identify endometriomas and deep endometriosis involving the bowel, bladder or ureter.

1.5.3 If a transvaginal scan is not appropriate, consider a transabdominal ultrasound scan of the pelvis.

Serum CA125

1.5.4 Do not use serum CA125 to diagnose endometriosis.

1.5.5 If a coincidentally reported serum CA125 level is available, be aware that:

  • a raised serum CA125 (that is, 35 IU/ml or more) may be consistent with having endometriosis

  • endometriosis may be present despite a normal serum CA125 (less than 35 IU/ml).

MRI

1.5.6 Do not use pelvic MRI as the primary investigation to diagnose endometriosis in women with symptoms or signs suggestive of endometriosis.

1.5.7 Consider pelvic MRI to assess the extent of deep endometriosis involving the bowel, bladder or ureter.

1.5.8 Ensure that pelvic MRI scans are interpreted by a healthcare professional with specialist expertise in gynaecological imaging.

Diagnostic laparoscopy

Also refer to section 1.10 on surgical management, and section 1.11 on surgical management if fertility is a priority.

1.5.9 Consider laparoscopy to diagnose endometriosis in women with suspected endometriosis, even if the ultrasound was normal.

1.5.10 For women with suspected deep endometriosis involving the bowel, bladder or ureter, consider a pelvic ultrasound or MRI before an operative laparoscopy.

1.5.11 During a diagnostic laparoscopy, a gynaecologist with training and skills in laparoscopic surgery for endometriosis should perform a systematic inspection of the pelvis.

1.5.12 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.

1.5.13 If a full, systematic laparoscopy is performed and is normal, explain to the woman that she does not have endometriosis, and offer alternative management.

1.6 Staging systems

1.6.1 Offer endometriosis treatment according to the woman's symptoms, preferences and priorities, rather than the stage of the endometriosis.

1.6.2 When endometriosis is diagnosed, the gynaecologist should document a detailed description of the appearance and site of endometriosis.

1.7 Monitoring for women with confirmed endometriosis

1.7.1 Consider outpatient follow‑up (with or without examination and pelvic imaging) for women with confirmed endometriosis, particularly women who choose not to have surgery, if they have:

  • deep endometriosis involving the bowel, bladder or ureter or

  • 1 or more endometrioma that is larger than 3 cm.

1.8 Pharmacological pain management

Analgesics

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

1.8.2 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.

1.8.3 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.

Neuromodulators and neuropathic pain treatments

1.8.4 For recommendations on using neuromodulators to treat neuropathic pain, see the NICE guideline on neuropathic pain.

Hormonal treatments

1.8.5 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.

1.8.6 Offer hormonal treatment (for example, the combined oral contraceptive pill or a progestogen)[1] to women with suspected, confirmed or recurrent endometriosis.

1.8.7 If initial hormonal treatment for endometriosis is not effective, not tolerated or is contraindicated, refer the woman to a gynaecology service, specialist endometriosis service (endometriosis centre) or paediatric and adolescent gynaecology service for investigation and treatment options.

1.9 Non-pharmacological management

1.9.1 Advise women that the available evidence does not support the use of traditional Chinese medicine or other Chinese herbal medicines or supplements for treating endometriosis.

1.10 Surgical management

1.10.1 Ask women with suspected or confirmed endometriosis about their symptoms, preferences and priorities with respect to pain and fertility, to guide surgical decision-making.

1.10.2 Discuss surgical management options with women with suspected or confirmed endometriosis. Discussions may include:

  • what a laparoscopy involves

  • that laparoscopy may include surgical treatment (with prior patient consent)

  • how laparoscopic surgery could affect endometriosis symptoms

  • the possible benefits and risks of laparoscopic surgery

  • the possible need for further surgery (for example, for recurrent endometriosis or if complications arise)

  • the possible need for further planned surgery for deep endometriosis involving the bowel, bladder or ureter.

1.10.3 Perform surgery for endometriosis laparoscopically unless there are contraindications.

1.10.4 During a laparoscopy to diagnose endometriosis, consider laparoscopic treatment of the following, if present:

  • peritoneal endometriosis not involving the bowel, bladder or ureter

  • uncomplicated ovarian endometriomas.

1.10.5 As an adjunct to surgery for deep endometriosis involving the bowel, bladder or ureter, consider 3 months of gonadotrophin-releasing hormone agonists[2] before surgery.

1.10.6 Consider excision rather than ablation to treat endometriomas, taking into account the woman's desire for fertility and her ovarian reserve. Also see ovarian reserve testing in the NICE guideline on fertility problems.

Combination treatments

1.10.7 After laparoscopic excision or ablation of endometriosis, consider hormonal treatment (with, for example, the combined oral contraceptive pill)[3], to prolong the benefits of surgery and manage symptoms.

Hysterectomy in combination with surgical management

1.10.8 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.

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

1.10.10 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).

1.11 Surgical management if fertility is a priority

The recommendations in this section should be interpreted within the context of NICE's guideline on fertility problems. The management of endometriosis-related subfertility should have multidisciplinary team involvement with input from a fertility specialist. This should include the recommended diagnostic fertility tests or preoperative tests, as well as other recommended fertility treatments such as assisted reproduction that are included in the NICE guideline on fertility problems.

1.11.1 Offer excision or ablation of endometriosis plus adhesiolysis for endometriosis not involving the bowel, bladder or ureter, because this improves the chance of spontaneous pregnancy.

1.11.2 Offer laparoscopic ovarian cystectomy with excision of the cyst wall to women with endometriomas, because this improves the chance of spontaneous pregnancy and reduces recurrence. Take into account the woman's ovarian reserve. (Also see ovarian reserve testing in the NICE guideline on fertility problems.)

1.11.3 Discuss the benefits and risks of laparoscopic surgery as a treatment option for women who have deep endometriosis involving the bowel, bladder or ureter and who are trying to conceive (working with a fertility specialist). Topics to discuss may include:

  • whether laparoscopic surgery may alter the chance of future pregnancy

  • the possible impact on ovarian reserve (also see ovarian reserve testing in the NICE guideline on fertility problems)

  • the possible impact on fertility if complications arise

  • alternatives to surgery

  • other fertility factors.

1.11.4 Do not offer hormonal treatment to women with endometriosis who are trying to conceive, because it does not improve spontaneous pregnancy rates.

Terms used in this guideline

Chronic pelvic pain

Defined as pelvic pain lasting for 6 months or longer.

Paediatric and adolescent gynaecology service

Paediatric and adolescent gynaecology services are hospital-based, multidisciplinary specialist services for girls and young women (usually aged under 18).

Ovarian cystectomy

Ovarian cystectomy is a surgical excision of an ovarian endometriotic cyst. An ovarian endometrioma is a cystic mass arising from ectopic endometrial tissue within the ovary.

Managed clinical networks

Linked groups of healthcare professionals from primary, secondary and tertiary care providing a coordinated patient pathway. Responsibility for setting up these networks will depend on existing service provision and location.

Endometriosis algorithm

Algorithm