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Endometriosis information and support

  • 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

  • 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

  • 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

  • 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

Endometriosis symptoms and signs

  • 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

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

  • 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

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

Referral for women with suspected or confirmed endometriosis

  • 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

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

  • 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

Diagnosing endometriosis

  • 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

  • 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

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

Serum CA125

  • Do not use serum CA125 to diagnose endometriosis

  • 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)

Staging systems

  • Offer endometriosis treatment according to the woman’s symptoms, preferences and priorities, rather than the stage of the endometriosis

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

Pharmacological pain management

Analgesics

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

  • 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

  • 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

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

Hormonal treatments

  • 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

  • Offer hormonal treatment (for example, the combined oral contraceptive pill or a progestogen)* to women with suspected, confirmed or recurrent endometriosis

  • 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

Non-pharmacological management

  • 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

Endometriosis algorithm

20170918 endometriosis diagnosis and management algorithm v4 1280x1717

The full algorithm can be found at nice.org.uk/guidance/ng73

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)

*At the time of publication (September 2017), not all combined oral contraceptive pills or progestogens have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Prescribing guidance: prescribing unlicensed medicines for further information.

© NICE 2017. Endometriosis: diagnosis and management. Available from: www.nice.org.uk/guidance/NG73. All rights reserved. Subject to Notice of rights.

NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. 

First included: September 2017.