Assessment and management of endometriosis in young people in primary care

Clinically, endometriosis is an enigmatic condition with sequelae that range from minor discomfort to a frozen pelvis and lifelong pain. Updated National Institute for Health and Care Excellence guidance is expected in December 2023 and will be welcomed to provide clearer direction as more is being understood about this condition. Primary care-initiated hormonal contraception can be beneficial for young people with suspected endometriosis as it downregulates endometrial activity and may ameliorate pain. However, this should not prevent a referral for confirmation. It is important that families are involved where consent is gained. A holistic approach is imperative in guiding and supporting the individual and family in the assessment and treatment of possible endometriosis. Funding Faraz Mughal, Doctoral Fellow, is funded by the National Institute for Health and Care Research (NIHR) (300957). The views expressed in this publication are those of the authors, and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. Provenance Freely submitted; externally peer reviewed. Competing interests Liz Hare and Faraz Mughal are members of the RCGP Adolescent Health Group. Liz Hare is a digital GP and works voluntarily for the National Confidential Enquiry into Patient Outcome and Death as a Case Reviewer on the Endometriosis and Transition project. Liz Hare works voluntarily for the UK Dermatology Clinical Trials Network. Discuss this article: bjgp.org/letters British Journal of General Practice, December 2023 573

1. Sarria-Santamera A, Orazumbekova B, Terzic M, et al. Systematic review and meta-analysis of incidence and prevalence of endometriosis. Healthcare (Basel) 2020; 9(1): 29. 2. Becker CM, Bokor A, Heikinheimo O, et al. ESHRE guideline: endometriosis. Hum Reprod Open 2022; 2022(2): hoac009. 3. Young K, Fisher J, Kirkman M. Women’s experiences of endometriosis: a systematic review and synthesis of qualitative research. J Fam Plann Reprod Health Care 2015; 41(3): 225–234. 4. Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ 2022; 379: e070750. 5. Johnston JL, Reid H, Hunter D. Diagnosing endometriosis in primary care: clinical update. Br J Gen Pract 2015; DOI: DOI: https://doi. org/10.3399/bjgp15X683665. Box 1. Key actions • To suspect endometriosis in a young person after exclusion of other appropriate aetiologies. Endometriosis can occur in young people: make use of advice and guidance/referral to gynaecology for prompt person-centred care. • Ensure to respond compassionately to young people with concerns about endometriosis, validate pain, and recognise that symptoms can be cyclical or persistent. Consider offering aids such as a symptom tracker. • Treat the young person and not the disease: check expectations on functioning in education or work, relationships, timing, and preparation for starting a family. Use digital communication systems to share patient information from recognised sources such as Endometriosis.org. • Prescribers should have a ‘can do’ attitude in initiating hormonal therapies with patient advice and support. These treatments can improve symptoms and allow the young person to function at work and in education. • Ensure that people with confirmed diagnosed endometriosis have clear explanations of the condition and access to specialists for long-term symptom control and discussions around conception, assisted reproductive technology, and the potential risk of obstetric complications. • Encourage young people to use patient-initiated follow-up (PIFU) for accessing gynaecological services during exacerbations. Primary care can offer initial clinical assessment and examination to support the PIFU discussion by responding to specific queries from gynaecology specialists.