Dr Rachel Brown explains what action to take when women present with possible signs and symptoms of endometriosis and summarises the recommendations from NICE Guideline 73

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Read this article to learn more about:

  • when you should consider a diagnosis of endometriosis
  • principles of care from diagnosis to referral
  • assessment, investigations, and treatments including for infertility.

Key points

Commissioning messages

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Endometriosis affects approximately 10% of women of reproductive age and is one of the most common gynaecological disorders.1 Its symptoms are many and varied and at present the condition can only be diagnosed at laparoscopy. Its precise cause is not yet clear but it is hormone mediated and is associated with menstruation.2,3

Impact of delay in diagnosis

There can often be a delay of 4–10 years between first reporting symptoms and confirmation of the diagnosis.4 Patient self-help groups, e.g. Endometriosis UK, emphasise that healthcare professionals often do not recognise the importance of severe symptoms and therefore do not consider the diagnosis of endometriosis.2,5 Many women report that the delay in diagnosis leads to chronic pain and ill health, and possibly to a condition that is more difficult to treat.2,3

The need for a guideline

Since endometriosis is very common, has a significant effect on women’s lives, and is difficult to diagnose, a guideline was very much needed. NICE Guideline (NG) 73, on Endometriosis: diagnosis and management, was published in September 2017 and makes recommendations for the diagnosis and management of endometriosis in community services, gynaecology services, and specialist endometriosis services.4 It also addresses the care of women with confirmed or suspected endometriosis, including recurrent endometriosis, those who do not have symptoms but have endometriosis discovered incidentally, and also adolescents (aged 17 and under).4 It did not examine the evidence for the investigation of fertility problems related to endometriosis, care of women with endometriosis occurring outside the pelvis, nor care of postmenopausal women. Evidence for these groups is scanty and management is therefore complex.

As is often the case, there is very little high-quality, relevant research in this area, so it was quite difficult to make recommendations from the research. Therefore, the committee often needed to come to a consensus based on best practice.3

The main principles of care

See Figure 1 for the principles of diagnosis and management of endometriosis, from first presentation to referral.4

Signs and symptoms of endometriosis

Endometriosis should be considered in women and adolescent females presenting with the following:4,6–8

  • chronic pelvic pain
  • period-related pain (dysmenorrhoea) affecting daily activities and quality of life
  • deep dyspareunia (pain during or after sexual intercourse)
  • period-related or cyclical gastrointestinal symptoms, e.g. dyschezia (painful bowel movements)
  • period-related or cyclical urinary symptoms, e.g. haematuria and dysuria
  • infertility in association with one or more of the above.

Tiredness and fatigue is also a common symptom of endometriosis.

It is important to distinguish pain symptoms that are associated specifically with endometriosis. Dysmenorrhea is very common and is usually managed successfully with analgesia, but in endometriosis, dysmenorrhea is often more severe, necessitating time off work despite analgesia. Severe, persistent, frequent symptoms should help to distinguish physiological from pathological pain associated with endometriosis in order to help GPs decide which women require further investigation.4

Pharmacological, non-pharmacological, and surgical management strategies

If endometriosis is suspected, then it is recommended that first-line treatment is with analgesia and contraceptive options in primary care, before a definitive diagnosis is needed.4

Note: Not all of the treatments discussed in this article currently (December 2017) have UK marketing authorisation for the indications mentioned. The prescriber should follow relevant professional guidance, taking full responsibility for all clinical decisions. Informed consent should be obtained and documented. See the General Medical Council’s guidance on Good practice in prescribing and managing medicines and devices9 for further information.

Analgesics

If a short (e.g. for 3 months) trial of paracetamol or a non-steroidal anti-inflammatory drug (NSAID) (alone or in combination) does not provide adequate pain relief, then other forms of pain management and referral for further assessment should be considered.4 There is very little research evidence specifically for endometriosis,10 and so in NICE NG73, data for chronic pelvic pain was used. This showed pain score evidence and cost-effectiveness for benefit of simple analgesia.3

Pain is the commonest and most debilitating symptom of endometriosis. It can be cyclical pelvic pain, during menstruation, sometimes starting before a period; some women experience constant pain. Referred pain to the back and legs is common. Women often also experience non-cyclical pain, deep dyspareunia, and pain associated with bowel and bladder functions. For many women, pain becomes persistent or chronic. There was no evidence to support the use of non-pharmacological methods for pain relief but the use of patient support groups and specialist endometriosis nurses is likely to be of great benefit.2,11

Hormonal treatments

Hormonal treatments for endometriosis reduce or stop menstruation and reduce pain. They are contraceptive but have no effect on subsequent fertility after discontinuation. The first-line hormonal treatment would generally be the combined oral contraceptive pill or the levonorgestrel coil (LNG-IUS). They have good efficacy and their side-effects are generally well tolerated. The evidence shows that conventional use of the combined oral contraceptive pill is effective, but continuous and tricycling of the pill are used in clinical practice. There is no evidence to support this approach but it is accepted as effective with limited adverse events. If first-line hormonal treatment is contraindicated or not tolerated, then women should be referred to a gynaecologist.3

When to refer

Bimanual examination should be offered and can sometimes identify several signs, such as reduced organ mobility and tender nodularity in the posterior vaginal fornix. However, a speculum examination is also essential to look for endometriotic vaginal lesions. Referral should be considered based on the severity, persistence, and recurrence of symptoms. If a clinical examination indicates pelvic signs of endometriosis, this should also lead to referral.4 NICE NG73 recommends that the woman should be referred if initial management is not effective, not tolerated, or is contraindicated.3

NICE NG73 also recommends that clinicians should 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.3

Assessment and investigation

The evidence showed that both ultrasound and magnetic resonance imaging (MRI) were reliable tests for identifying site-specific endometriosis in a specialist setting. An ultrasound scan performed in a specialist endometriosis service accurately identifies site-specific endometriosis (e.g. endometrioma, rectovaginal, and rectocervical disease). However if endometriosis is superficial and spread across different sites throughout the pelvis, ultrasound is less accurate. If an ultrasound is inconclusive or negative, but deep endometrioses involving the bowel, bladder, or ureter are suspected, then women might be referred for an MRI scan, normally once in secondary care. Do not exclude endometriosis if vaginal examination and ultrasound are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation.4

The evidence did not support the use of any existing biomarkers to identify endometriosis.3 The health economic model used to develop guidelines showed that in all patient populations with endometriosis, a delay in diagnosis and treatment was not beneficial to the patient or the NHS.1–3,11,12

If a full, systematic laparoscopy is normal, then the woman does not have endometriosis. Laparoscopy is the ‘gold standard’ for making a diagnosis but needs to done by a gynaecologist with an interest in endometriosis. If results are normal, then other system investigation may be appropriate or consideration of referral to chronic pain specialists may be useful.

Challenges and considerations for primary care

Endometriosis can be a long-term condition, with a significant physical, sexual, psychological, and social impact. Complicated endometriosis treatments should be provided by a specialist endometriosis centre and may require multidisciplinary team involvement.4 The recurrence rates post-surgery are high and often require several surgical procedures, each with reducing benefits.4 These women should be considered as having a chronic disease and therefore need adequate support and regular review.

Supporting women in primary care with severe, chronic pain due to endometriosis is a challenge. Women with signs suggestive of deep endometriosis involving bowel, bladder, or ureter need further investigations, surgery, or both and would benefit from early referral to a specialist endometriosis service (endometriosis centre); see NICE NG73, para 1.1.4 for a description of this.4 Care needs to be taken to avoid missing serious complications, e.g. renal obstruction, bladder and bowel perforation.

Patient preferences need to be considered and some women may not choose to have surgery. These women should be monitored because their symptoms are likely to persist and there may also be disease progression.4 Patient support groups and specialist endometriosis nurses are an invaluable, under-utilised resource. Chronic pain services can also provide excellent management for persistent endometriotic pain. Hysterectomy is a cost-effective option and should be considered in those for whom it might be appropriate.4

Endometriosis is associated with a small increased risk of ovarian cancer. However this risk is too small to suggest offering surveillance.3

Infertility

Endometriosis is an important cause of infertility, with a prevalence of 25–40% in infertile women, compared with 0.5–5% in fertile women.3 Management of endometriosis in women who wish to conceive should focus on options to improve their chances of pregnancy. Surgery offers the best chance of conception for women with endometriosis-related subfertility, in particular in those where the disease does not involve the bowel, bladder, or ureter. Surgery is also the most cost-effective management option for women trying to conceive.3

The evidence shows that excision or ablation of endometriosis plus adhesiolysis for endometriosis not involving the bowel, bladder, or ureter, improves the chance of spontaneous pregnancy. In women with endometriomas, laparoscopic ovarian cystectomy with excision of the cyst wall improves the chance of spontaneous pregnancy and reduces recurrence. However this might reduce ovarian reserve. Therefore if the woman is older, she might prefer to retain all her ovarian tissue. Women with more severe endometriosis who wish to conceive should be managed in collaboration with a fertility specialist in order that treatment options, including assisted conception techniques, can be considered. In asymptomatic women, laparoscopy may not be the best option to improve fertility because of the surgical risks of reducing ovarian reserve. For these women, investigation with an ultrasound scan, tubal patency testing, and expectant management might be offered before discussion of assisted conception techniques. Women who have symptomatic endometriosis are more likely to be offered laparoscopy.3

Dr Rachel Brown

GP, Bristol

Member of the guideline development group for NG73

Key points

  • Endometriosis should be considered in women with:
    • chronic pelvic pain
    • severe dysmenorrhoea
    • deep dyspareunia
    • cyclical gastrointestinal symptoms, in particular dyschezia
    • cyclical urinary symptoms, in particular, haematuria and dysuria
    • infertility in association with one or more of the above
  • If endometriosis is suspected, then it is recommended that the first-line treatment is with analgesia and contraceptive options in primary care, before a definitive diagnosis is needed
  • If first-line hormonal treatment is unsuccessful, contraindicated, or not tolerated, then women should be referred to a gynaecologist
  • Bimanual examination can sometimes identify several signs, such as reduced organ mobility and tender nodularity in the posterior vaginal fornix. However, a speculum examination is also essential to look for endometriotic vaginal lesions
  • Do not exclude endometriosis if vaginal examination and ultrasound are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation
  • If a full, systematic laparoscopy is normal, then the woman does not have endometriosis
  • Endometriosis can be a long-term condition, with a significant physical, sexual, psychological, and social impact
  • Endometriosis is an important cause of infertility
  • Endometriosis is associated with a small increased risk of ovarian cancer; however this risk is too small to warrant offering surveillance.

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GP commissioning messages

  • Endometriosis is a common but often difficult condition to diagnose accurately
  • Commissioners, working with local specialist providers, should agree local diagnosis and referral pathways based on the principles of NICE guidance:
    • these pathways should define which investigations should be ordered in primary care in cases of suspected endometriosis but also clearly signpost when specialist referral is indicated
  • Local formularies should define which pharmacological agents can be used for endometriosis and when these are used within or outside of licence:
    • the formulary could contain suitable information leaflets for patients, which can be printed off for them.

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Read the Guidelines summary of NG73 on Endometriosis: diagnosis and management for more information on endometriosis

References

  1. Somigliana E, Vercellini P. Endometriosis: epidemiology and aetiological factors. Best Pract Res Clin Obstet Gynaecol 2004; 182: 177–200.
  2. Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril 2006; 86 (5): 1296–1301.
  3. NICE. Endometriosis: diagnosis and management—full guideline. NICE Guideline 73. NICE, 2017. Available at: www.nice.org.uk/guidance/ng73/evidence/full-guideline-pdf-4550371315 (accessed 29 November 2017).
  4. NICE. Endometriosis: diagnosis and management. NICE Guideline 73. NICE, 2017. Available at: nice.org.uk/ng73
  5. Endometriosis UK website. www.endometriosis-uk.org
  6. Whitehill K, Yong P, Williams C. Clinical predictors of endometriosis in the infertility population: is there a better way to determine who needs a laparoscopy? J Obstet Gynaecol Can 2012; 34 (6): 552–557.
  7. Calhaz-Jorge C, Mol B, Nunes J, Costa A. Clinical predictive factors for endometriosis in a Portuguese infertile population. Hum Reprod 2004; 19 (9): 2126–2131.
  8. Peterson C, Johnstone E, Hammoud A et al and ENDO study working group. Risk factors associated with endometriosis: importance of study population for characterizing disease in the ENDO Study. Am J Obstet Gynecol 2013; 208 (6): 451.e1–11.
  9. General Medical Council. Good practice in prescribing and managing medicines and devices. GMC, 2013. Available at: www.gmc-uk.org/Prescribing_guidance.pdf_59055247.pdf
  10. Kauppila A, Rönnberg L. Naproxen sodium in dysmenorrhea secondary to endometriosis. Obstet Gynecol 1985; 65 (3): 379–383.
  11. Culley L, Hudson N, Mitchell H et al. Endometriosis: improving the wellbeing of couples—summary report and recommendations. De Montfort University, 2013. Available at: www.dmu.ac.uk/documents/research-documents/health-and-life-sciences/reproduction-research/endopart/endopart-study-summary-report-and-recommendations.pdf
  12. NICE. Endometriosis: diagnosis and management—appendix K. NICE Guideline 73. NICE, 2017. Available at: www.nice.org.uk/guidance/ng73/evidence/appendix-k-pdf-163813367126