Endometriosis clinical practice guideline

Executive summary

Endometriosis is a chronic inflammatory condition that is defined as the presence of endometrial-like tissue outside the uterus.[1]Montgomery, G.W. and L.C. Giudice, New Lessons about Endometriosis – Somatic Mutations and Disease Heterogeneity. N Engl J Med, 2017. 376(19): p. 1881-1882. Australian data indicate a prevalence of endometriosis of 11.4%, with people aged 30–34 years most likely to receive the diagnosis.[2]Rowlands, I.J., et al., Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG, 2020. This condition accounted for 34,200 hospitalisations in 2016–2017 in Australia, with at least one procedure occurring in 95% of these separations.[3]Australian Institute of Health and Welfare, Endometriosis in Australia: prevalence and hospitalisations, in2019, AIHW: Canberra. Common symptoms of endometriosis may include persistent pelvic pains, fatigue and infertility. These symptoms are not specific to endometriosis and there are many causes of each symptom. This guideline reviews the evidence around endometriosis as a cause for these symptoms, rather than all types of pelvic pain or infertility.

In 2018, the Australian Government launched the National Action Plan for Endometriosis (NAPE).[4]Department of Health, National Action Plan for Endometriosis. 2018, Department of Health: Canberra. The NAPE details 3 priority areas: education and awareness, clinical care and research. The development of this document – Australian clinical practice guideline for the diagnosis and management of endometriosis – is linked to the ‘clinical care’ priority area in the NAPE. The guideline seeks to provide up-to-date evidence-based guidance to support the highest quality care for people with endometriosis in a variety of care settings across Australia.

Importantly, this guideline also provides evidence-based guidance to support the diagnosis and treatment of adenomyosis – a related condition that occurs independent of or in conjunction with endometriosis in some people and is often overlooked. The Australian Coalition for Endometriosis (ACE) is the peak consumer group and advocacy body representing the needs of people with endometriosis in Australia. ACE recommended that adenomyosis be included in this guideline, given that there is no national or international guidance on the diagnosis or treatment of the condition.

This guideline was developed using a partial adaptation approach based on Grading of Recommendations Assessment, Development and Evaluation (GRADE) methods.[5]Schünemann H, Brożek J, Guyatt G, Oxman A, editors. GRADE handbook for grading quality of evidence and strength of recommendations. The GRADE Working Group.Updated October 2013. Available from: … Continue reading The National Institute for Health and Care Excellence (NICE) guideline NG73, Endometriosis: diagnosis and management [6]National Institute for Health and Care Excellence (NICE) guideline NG73, Endometriosis: diagnosis and management 2017. was selected as the reference guideline. Systematic literature reviews examined recent evidence (to October 2019) and additional topics not covered in the NICE guideline. The evidence review process was completed in 2020. A multidisciplinary working group – the Endometriosis Expert Working Group (EEWG) – was established, with members from across Australia with an interest in endometriosis and adenomyosis. EEWG members represented primary, secondary and tertiary care settings, as well as allied health and consumers. The EEWG developed 20 research questions spanning the entire patient journey, from presentation through to follow-up and secondary prevention. The entire body of evidence for a research question was taken into consideration when formulating recommendations, either by adopting or adapting the recommendations in the NICE guideline, or by developing entirely new recommendations based on the available evidence or consensus of EEWG members.

Recommendations made by the working group were based on available scientific evidence, with both the quantity and quality of that evidence assessed. Recommendations were designated as ‘Evidence-based recommendations’, ‘Consensus-based recommendations’ or ‘EEWG opinion’, depending on the availability of supportive evidence. The EEWG noted the low quality and often absence of evidence in many areas relating to basic sciences, diagnosis, management and care for those with endometriosis and adenomyosis.

A range of non-pharmacological and non-surgical options for managing pain associated with endometriosis were considered (e.g. physiotherapy, dietetics and yoga), and while there may have been indirect evidence for these options (e.g. in people with chronic pelvic pain), no evidence was available relating to these options specifically in patients with endometriosis.

For adenomyosis, a limited number of questions were addressed relating to diagnostics and pharmacological and surgical treatments. The EEWG noted that there are other treatments described that are not reviewed in this guideline because they fell outside the scope of the research questions.

Given the prevalence of endometriosis and the impact that it has on individuals, families and the community, the EEWG strongly recommends that ongoing investment by the clinical, research and patient groups in conjunction with government and health organisations is a critical priority to improving the quality of care.

The guideline is applicable to all practitioners who care for people with endometriosis. For general practitioners (GPs), key to understanding endometriosis is awareness of the condition and the impact that it may cause. Areas of note for primary care include symptoms and signs of endometriosis, clinical examination, initiating management and appropriately timed ultrasound as the primary imaging modality to aid diagnosis. Importantly, a shared decision-making approach around analgesic regimes for pain management and hormonal medications to treat endometriosis is recommended.

Further GP-specific tools will be developed to aid the implementation of this guideline. People with endometriosis may also find this guideline useful to note the presence or absence of scientific study to support specific areas of diagnosis and management of endometriosis.

This guideline is presented in two key documents. A detailed technical report describes the methods, findings of the literature search update and the deliberations of the EEWG during formulation of the recommendations. The guideline itself (this document) sets out the core recommendations to guide the diagnosis and management of endometriosis and adenomyosis.

We trust that this guideline will contribute to improved care and greater consistency in clinical practice for people with endometriosis and adenomyosis across Australia.

Professor Jason Abbott and Dr Mark Ruff
on behalf of the RANZCOG EEWG


The guideline

Click to view or download the Australian clinical practice guideline for the diagnosis and management of endometriosis


The technical report

Click to view or download the technical report associated with this guideline


Version history

First endorsed by RANZCOG:June 2021
Current: June 2021
Review due: March 2024

Background: This statement was first developed in June 2021. This guideline should be cited as: Australian clinical practice guideline for the diagnosis and management of endometriosis (2021). RANZCOG, Melbourne, Australia.

Per the below full disclaimer (also included in the PDF), this work is copyright. Apart from any use as permitted under the Copyright Act 1968, parts of the document can be reproduced by clinicians, hospitals and medical and allied health organisations without permission; however, any use of the materials needs to be acknowledged using the citation below. Requests and enquiries concerning reproduction and rights should be addressed to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), College House, 254–260 Albert Street East Melbourne, Victoria 3002, Australia, or via email to: guideline@ranzcog.edu.au

This guideline draws on National Institute for Health and Care Excellence (NICE) guidance ©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. It is subject to regular review and updating and may be withdrawn. NICE accepts no responsibility for the use of its content in this guideline.

Funding: This guideline was developed with funding support from the Australian Government Department of Health, Canberra, Australia, administered by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), Melbourne, Australia.

Appendix A: Contributors

RANZCOG established an Endometriosis Expert Working Group (EEWG) to develop this guideline. The role of the EEWG was to provide expertise and advice on matters relating to the diagnosis, treatment and management of people with endometriosis throughout the guideline development process. We acknowledge the generous, thoughtful contributions of the members of the EEWG listed below.

A.1 Australian Endometriosis Expert Working Group

NameRole in guideline developmentSpecialty/affiliation
Professor Jason AbbottChair, EEWG PICO Working Group Member Implementation Working Group MemberThe Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)
Dr Mark RuffEEWG Deputy Chair PICO Working Group MemberRANZCOG
Dr Mike ArmourEEWG MemberComplementary Medicine (Western Sydney University / NICM Health Research Institute)
Dr Marilla DruittEEWG Member Implementation Working Group MemberRANZCOG
Ms Taryn HallamEEWG MemberPhysiotherapist (Women’s Health Training Associates)
Dr Stephen HolmesEEWG MemberRepresentative of The Australian College of Rural and Remote Medicine (ACRRM)
Dr Karin JonesEEWG MemberRepresentative of The Australian and New Zealand College of Anaesthetists (ANZCA)
Professor Yee LeungEEWG MemberChair of RANZCOG Women’s Health Committee
Dr Stephen LyonsEEWG Member PICO Working Group MemberRepresentative of The Australasian Gynaecological Endoscopy and Surgery Society (AGES)
Professor Danielle MazzaEEWG Member Chair, Implementation Working GroupRepresentative of The Royal Australian College of General Practitioners (RACGP)
Dr Rachel MudgeEEWG Member Implementation Working Group MemberConsumer Representative
Ms Melissa Parker RNEEWG Member Implementation Working Group MemberRegistered Nurse/Midwife (Canberra Endometriosis Centre)
A/Professor Emma ReadmanEEWG MemberRANZCOG
A/Professor Anusch YazdaniEEWG Member PICO Working Group MemberCertificate of Reproductive Endocrinology and Infertility (CREI) Fellow, RANZCOG
Ms Vase JovanoskaEx officioCEO, RANZCOG
Dr Vijay RoachEx officioPresident, RANZCOG

Project Management and Secretariat

NamePosition/affiliation
Jinty WilsonHead of Research and Policy, Women’s Health, Research and Policy, RANZCOG
Maheshie JayawickramaResearch Project Officer, Women’s Health, Research and Policy, RANZCOG

Methodologists

NamePosition/Affiliation
Dr Agnes WilsonManager, Policy and Implementation, Health Research Consulting (hereco)
Dr Sue CampbellDirector, Research Translation, Health Research Consulting (hereco)
Dr Samara LewisManager, Research Translation, Health Research Consulting (hereco)
Dr Sarah NorrisExecutive Director, Health Research Consulting (hereco)
Amber SalisburyResearcher, Health Research Consulting (hereco)
Rosemary WadeResearcher, Subcontractor to Health Research Consulting (hereco)

Medical editing

NameAffiliation
Dr Hilary CadmanCadman Editing Services

Full disclaimer

Purpose

This Guideline has been developed to provide general advice to practitioners about women’s health issues concerning endometriosis and related conditions and should not be relied on as a substitute for proper assessment with respect to the particular circumstances of each case and the needs of any person with endometriosis or a related condition. It is the responsibility of each practitioner to have regard to the particular circumstances of each case. Clinical management should be responsive to the needs of the individual person with endometriosis or a related condition and the particular circumstances of each case.

Quality of information

The information available in the Australian clinical practice guideline for the diagnosis and management of endometriosis is intended as a guide and provided for information purposes only. The information is based on the Australian context using the best available evidence and information at the time of preparation. While RANZCOG had endeavoured to ensure that information is accurate and current at the time of preparation, it takes no responsibility for matters arising from changed circumstances or information or material that may have become subsequently available. The use of this information is entirely at your own risk and responsibility.

For the avoidance of doubt, the materials were not developed for use by patients, and patients must seek medical advice in relation to any treatment. The material includes the views or recommendations of third parties and does not necessarily reflect the views of RANZCOG or indicate a commitment to a particular course of action.

Third-party sites

Any information linked in this guideline is provided for the user’s convenience and does not constitute an endorsement or a recommendation or indicate a commitment to a particular course of action of this information, material, or content unless specifically stated otherwise.

RANZCOG disclaims, to the maximum extent permitted by law any responsibility and all liability (including without limitation, liability in negligence) to you or any third party for inaccurate, out of context, incomplete or unavailable information contained on the third-party website, or for whether the information contained on those websites is suitable for your needs or the needs of any third party for all expenses, losses, damages and costs incurred.

Exclusion of liability

The College disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) to you or any third party for any loss or damage which may result from your or any third party’s use of or reliance of this guideline, including the materials within or referred to throughout this document being in any way inaccurate, out of context, incomplete or unavailable for all expenses, losses, damages, and costs incurred.

Exclusion of warranties

To the maximum extent permitted by law, RANZCOG makes no representation, endorsement, or warranty of any kind, expressed or implied in relation to the materials within or referred to throughout this guideline being in any way inaccurate, out of context, incomplete or unavailable for all expenses, losses, damages and costs incurred.

These terms and conditions will be constructed according to and are governed by the laws of Victoria, Australia.

DISCLAIMER

This information is intended to provide general advice to practitioners. This information should not be relied on as a substitute for proper assessment with respect to the particular circumstances of each case and the needs of any patient. This document reflects emerging clinical and scientific advances as of the date issued and is subject to change. The document has been prepared having regard to general circumstances.


RESOURCES FOR THE PUBLIC

Raising Awareness Tool for Endometriosis (RATE)

Patient information pamphlet


RESOURCES FOR MEDICAL PROFESSIONALS

Endometriosis eLearning module

Statements and guidelines

References

References
1 Montgomery, G.W. and L.C. Giudice, New Lessons about Endometriosis – Somatic Mutations and Disease Heterogeneity. N Engl J Med, 2017. 376(19): p. 1881-1882.
2 Rowlands, I.J., et al., Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG, 2020.
3 Australian Institute of Health and Welfare, Endometriosis in Australia: prevalence and hospitalisations, in2019, AIHW: Canberra.
4 Department of Health, National Action Plan for Endometriosis. 2018, Department of Health: Canberra.
5 Schünemann H, Brożek J, Guyatt G, Oxman A, editors. GRADE handbook for grading quality of evidence and strength of recommendations. The GRADE Working Group.Updated October 2013. Available from: https://gdt.gradepro.org/app/handbook/handbook.html
6 National Institute for Health and Care Excellence (NICE) guideline NG73, Endometriosis: diagnosis and management 2017.