Guidance
Rationale and impact
Rationale and impact
This section briefly explains why the committee made the recommendations and how they might affect practice. They link to details of the evidence and a full description of the committee's discussion.
Endometriosis signs and symptoms
Recommendations 1.3.2 and 1.3.4 to 1.3.6
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.
Diagnosis of endometriosis
Recommendations 1.5.1 to 1.5.13 and 1.5.15
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.
Ultrasound
There was evidence that transvaginal ultrasound was, in the majority of studies, moderately to highly sensitive at detecting deep endometriosis, particularly when involving the ovaries. However, the committee were aware that these data were when the ultrasound was carried out by a specialist operator, and that ultrasounds carried out in a non-specialist setting may not achieve this degree of sensitivity. The committee also agreed, however, that non-specialist ultrasound was still a useful tool that would help identify deep endometriosis or endometrioma or other pathology. They therefore recommended that all women or people with suspected endometriosis should have an ultrasound examination as this will allow identification of ovarian endometriomas or deep endometriosis, may identify other pathology which could be leading to the symptoms (such as fibroids or malignancy), and will help determine the need for a referral and the most appropriate referral option. The committee agreed that an ultrasound should be offered to all women or people presenting with symptoms suggesting endometriosis as part of the standard diagnostic work-up, as failure to diagnose endometriosis was a common problem.
The recommendation on alternatives to transvaginal ultrasound has been amended to clarify that the reasons for not carrying out a transvaginal ultrasound may be because the woman or person with suspected endometriosis does not wish to have this internal scan, or if there are other reasons which mean it is not suitable for the person. This clarifies that it is not just the healthcare professional who makes a decision on the use of a transvaginal ultrasound.
Based on the committee's knowledge and experience, the recommendation on referral to a gynaecology service after ultrasound has been updated to 'refer' instead of 'consider referring' as in the previous version of this guideline, as the committee agreed that there was no other option but to refer people who met the listed criteria for referral so that they can receive appropriate further investigations and treatment. People would still have the option to decline the referral. In addition, the criteria for referral to a specialist endometriosis service were amended to include the presence of an endometrioma and the location of deep endometriosis has been clarified. Endometriomas are often associated with deep endometriosis or severe endometriosis, and management, particularly if fertility is a priority, can be complicated so specialist services are most appropriate for this. The recommendation on referral of young women or people has similarly also been updated.
Serum CA125
There was some new evidence for the sensitivity and specificity of CA125 to diagnose endometriosis, but the committee agreed that this was insufficient to change the existing recommendation which advised that it was not a suitable tool to diagnose endometriosis.
MRI
There was evidence from the majority of studies that MRI was moderately to highly sensitive at detecting deep endometriosis. The evidence for the use of transvaginal ultrasound for the diagnosis of deep endometriosis involving a number of locations (vaginal, rectosigmoid, rectovaginal, uterosacral ligaments, pouch of Douglas, bowel, bladder and ureters) showed that, in the majority of studies, it was moderately sensitive, although the committee agreed this may depend on operator experience, and that sensitivity would be optimal with more experienced operators who would be likely to be carrying out ultrasounds in gynaecology or specialist endometriosis services. Based on this, the committee agreed that suspected deep endometriosis could be diagnosed and assessed by specialist ultrasound or MRI, and the choice of imaging technique should be a clinical decision based on available resources.
The committee agreed, based on their knowledge and experience, that both specialist ultrasound and MRI scans should be both planned and interpreted by someone with expertise in gynaecological imaging to maximise diagnostic accuracy.
Diagnostic laparoscopy
The committee agreed that laparoscopy (which had been considered the gold standard diagnostic technique in the evidence review) could be used as an option for women or people with symptoms of endometriosis even if ultrasound or MRI results were normal. The committee noted, based on their knowledge and experience, there was a need to ensure the imaging results were recorded when carrying out a diagnostic laparoscopy.
The committee noted that even a normal laparoscopy could not rule out endometriosis fully, as there was a possibility of microscopic endometriosis causing the symptoms. The committee therefore updated the existing recommendation and clarified that management of symptoms was the aim of treatment.
How the recommendations might affect practice
Ultrasound
Early investigation using ultrasound reflects what is now current best practice but it is possible there will be some increase in the use of early transvaginal ultrasound. An early ultrasound scan may replace the need for a transvaginal ultrasound scan after referral to gynaecology services for some women or people (particularly those who are referred and then seen without undue delay), and so is unlikely to greatly increase the total number of transvaginal ultrasounds for diagnosis of endometriosis. This change is therefore not expected to lead to a large increase in resource use in terms of the number of ultrasound scans, but there will be a need for additional training of sonographers to increase their competency to detect features associated with endometriosis.
The change to referring all women and people with symptoms of, or confirmed endometriosis who meet the specified criteria, compared to considering referral in the previous version of this guideline may lead to more people being referred, but this will improve the diagnosis and management of endometriosis, and is likely to lead to earlier diagnosis and treatment and less damage to organs and structures from the disease, and therefore reduce subsequent treatment costs.
MRI
The use of specialist ultrasound as an alternative to MRI to diagnose deep endometriosis may lead to cost-savings in the NHS, as MRI is more expensive than ultrasound. The specialist planning and interpretation of scans may increase the number of people whose endometriosis is successfully identified.
Serum CA125 and diagnostic laparascopy
These recommendations reinforce current practice.
Management of endometriosis when fertility is a priority
Recommendations 1.10.2 to 1.10.4
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.