Endometriosis: diagnosis and management. NICE NG73, September 2017

This guideline on the diagnosis and management of endometriosis aims to raise awareness of symptoms, and to provide clear advice on what action to take when women first present with signs and symptoms of endometriosis. The guideline also provides advice on the range of treatments available.

Endometriosis is a chronic condition characterised by the presence of endometrial tissue in sites other than the uterus, most commonly in the pelvic cavity, the ovaries, the colon, bladder and ureter. It causes chronic pain, dyspareunia and infertility.

It is thought to affect 10-15% of women of reproductive age but it is difficult to be more exact because of the range of symptoms and their severity, and because in some women, the condition does not cause symptoms.

On average, women can wait 7.5 years from first seeing a clinician before receiving a confirmed diagnosis, resulting in prolonged pain and a condition that has progressed and become more difficult to treat. It can be a long-term condition with a significant impact on physical, sexual, psychological and social well-being.

A key recommendation is that managed clinical networks should be set up, consisting of GPs, practice nurses, school nurses and sexual health services, gynaecology services and specialist endometriosis centres. This would help to provide coordinated care for women with suspected or confirmed endometriosis, and ensure processes are in place for prompt diagnosis and treatment.

Suspect endometriosis

Consider endometriosis in women, including those aged 17 and under, with one or more of the following:

• Chronic pelvic pain
• Period pain (dysmenorrhea) affecting daily activities and quality of life
• Deep pain during or after sexual intercourse
• Period-related or cyclical gastrointestinal symptoms, particularly painful bowel movements
• Period-related or cyclical urinary symptoms, particularly blood in the urine or pain passing urine
• Infertility in association with one or more of the above.

If endometriosis is suspected, recommend that the woman keeps a pain and symptom diary to aid discussions.

If appropriate (i.e. within your competence), offer an abdominal and pelvic examination to identify abdominal masses and pelvic signs, (reduced organ mobility and enlargement, tenderness in the posterior vaginal fornix, and visible vaginal endometriotic lesions), or refer to GP for examination.

When assessing the woman, take into account their circumstances, symptoms, priorities, desire for fertility, aspects of daily living including work and study, and their physical, psychosexual and emotional needs.

Information and support

Women with suspected or confirmed endometriosis should be provided with information and support, including:

• What endometriosis is
• Its signs and symptoms
• How it is diagnosed
• Treatment options
• Local support groups, online forums and national charities, and how to access them.

Initial management

• Offer a short trial (e.g. 3 months) of paracetamol or non-steroidal anti-inflammatory drug (NSAID), alone or in combination
• Offer hormonal treatment (combined oral contraception or a progestogen)
• Refer to NICE guideline on neuropathic pain for treatment with neuromodulators (amitriptyline, duloxetine, gabapentin or pregabalin)
• Advise women that there is no available evidence to support the use of herbal medicines, including traditional Chinese medicine, or supplements for treating endometriosis.

If fertility is a priority, the management of endometriosis-related subfertility should have multidisciplinary team involvement with input from a fertility specialist, and should include diagnostic fertility and preoperative tests and recommended fertility treatment i.e. assisted reproduction. Do not offer hormonal treatment to women for whom fertility is a priority.

NB Not all combined oral contraceptive pills, progestogens or gonadotrophin-releasing hormone agonists (GnRHa) are licensed for this indication: prescribers should follow relevant professional guidance, take full responsibility for their decision, and obtain and document informed consent.

Referral

Consider referral to a gynaecology, paediatric and adolescent gynaecology, or specialist endometriosis service if:

• They have severe, persistent or recurrent symptoms
• They have pelvic signs of endometriosis, or
• Initial treatment with paracetamol +/- NSAID does not provide adequate pain relief
• Initial hormonal treatment is not effective, not tolerated or is contraindicated.

Refer to gynaecology service for severe, persistent or recurrent symptoms of endometriosis, if, or if initial management is not effective, not tolerated or contraindicated.

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

Refer young women (aged 17 and under) to paediatric and adolescent gynaecology service.

Diagnosis

• Do not use pelvic MRI or cancer antigen 125 (CA-125) to diagnose endometriosis.
• Consider transvaginal ultrasound to investigate suspected endometriosis, even if pelvic and/or abdominal examinations are normal, and for deep endometriosis involving the bowel, bladder or ureter. If a transvaginal scan is inappropriate, consider transabdominal ultrasound.
• Do not exclude endometriosis if these investigations and examinations are normal and symptoms persist.
• Laparoscopy may be indicated to confirm diagnosis.

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

Surgical management

For endometriosis that does not involve the bowel, bladder or ureter, laparascopic excision or ablation is recommended.

Discuss the benefits and risks of laparascopic surgery for deep endometriosis, including:

• The effect on the chance of future pregnancy
• The possible impact on ovarian reserve (the capacity of the ovaries to provide egg cells that are capable of fertilisation)
• The effect of complications on fertility
• Alternatives to surgery (i.e. medical management)

For deep endometriosis, a 3-month course of GnRHa is recommended before surgery. Do not offer hormonal treatment for women who want to conceive. For some women (if fertility is not important), hysterectomy may be indicated.

Be aware that women are likely to need long term support if they develop endometriosis, and that they will need follow-up after surgery. They may need hormonal treatment after surgery, and if the initial surgical procedure is unsuccessful, repeat surgery may be needed.

References

1. NICE NG73. Endometriosis: diagnosis and management; September 2017, updated 2024. https://www.nice.org.uk/guidance/ng73

2. NICE CG173. Neuropathic pain in adults: pharmacological management in non-specialist settings, 2013 (updated 2017). https://www.nice.org.uk/guidance/cg173

Resources

Endometriosis UK, http://www.endometriosis-uk.org/ 0808 808 2227

Fertility Friends, http://www.fertilityfriends.co.uk/

Fertility Network UK, http://fertilitynetworkuk.org 01424 732361

Pain Concern http://painconcern.org.uk/ 0300 123 0789

The Hysterectomy Association https://www.hysterectomy-association.org.uk/