{"paper_id":"66372c4c-b647-42f7-9783-1c8485aa9aea","body_text":"Endometriosis is a chronic inflammatory \ncondition resulting from the presence of \nendometrial tissue, glands, and stroma \nin extra-uterine sites. It is a common \ncondition affecting approximately 1% \nto 5% of women, although this is a likely \nunderestimation, with symptoms often \nbeginning in teenage years. 1 The 2022 \nEuropean Society of Human Reproduction \nand Embryology (ESHRE) Guideline for \nthe first time has new recommendations \nfor the diagnosis and management of \nendometriosis in adolescents (<20 years).2 \nThis clinical practice article provides an \nupdate on best practice for the assessment \nand management of likely endometriosis in \nyoung people up to 25 years. \nPATIENT EXPERIENCES\nEndometriosis impacts on all areas of a \nyoung person’s life: education or work life, \nsocial life, and relationships.3 Young women \nhave experienced substantial disruption \nto careers and education from symptoms \nof severe pain, tiredness, and side effects \nof analgesia such as nausea. Pain has \nbeen described as ‘crippling’ and ‘horrific’ \nwith duration of pain important. 3 Young \nwomen have described GPs normalising \nendometriosis-related pain and be reluctant \nto refer to a specialist. 3 Patients have \ndescribed preferring surgical treatments \nover pharmacological treatments because \nthere were perceived to be fewer side \neffects and enhanced symptom relief.3\nASSESSMENT\nFor young people, the consideration of \nendometriosis as a diagnosis may be \noverlooked for painful periods, for example, \nresulting in a protracted patient journey (up to \n12 years from onset to diagnosis), affecting \nquality of life, and possible future fertility. \nRisk factors for endometriosis specific to \nyoung people include family history, early \nmenarche, and a short menstrual cycle. \nEndometriosis should be considered in \nyoung women presenting with one or more \nof: chronic cyclical or acyclical pelvic pain \nwith nausea; dysmenorrhea (affecting \nactivities of daily living); deep dyspareunia; \ncyclical gastrointestinal symptoms \n(dyschezia); cyclical urinary symptoms \n(dysuria or haematuria), or infertility with \nany of the preceding conditions.4 Fatigue is \nalso commonly described in endometriosis. \nEndometriosis should also be considered \nin young women presenting with cyclical \nabsenteeism from school and use of oral \ncontraceptives for dysmenorrhea.\nUltrasound (if appropriate, a transvaginal \nultrasound can diagnose ovarian \nendometriosis) and magnetic resonance \nimaging (MRI) can be used to diagnose \nendometriosis, but negative findings do not \nexclude endometriosis.2 To rule out other \nconditions in primary care, the practitioner \nshould undertake an abdominal and pelvic \nexamination (where appropriate and with \nconsent of the young person) to exclude \nmasses. On examination, elicited pain, \nvaginal nodules, and adnexal masses \ncan support suspicion of endometriosis.5 \nAppropriate differentiating investigations \ninclude a mid-stream urine, faecal \ncalprotectin, vaginal swabs, blood tests, and \nultrasound to exclude urinary tract infections, \nfibroids/myomas, pelvic inflammatory \ndisease, irritable bowel, and inflammatory \nbowel disease. Endometriosis can be \nmisdiagnosed as irritable bowel syndrome.5 \nThe CA-125 blood test is not recommended \nfor suspecting endometriosis.2\nIn young women with suspected \nendometriosis, where other potential \ndiagnoses are excluded and medical \ntreatment is not successful, practitioners \nshould refer them to an age-appropriate \ngynaecology service for consideration \nof diagnostic laparoscopy, ideally in a \nspecialist endometriosis centre, or to a \ngynaecologist with a specialist interest.\nTREATMENT\nIn young people with dysmenorrhea \nand/or endometriosis-associated pain, \nAssessment and management of endometriosis \nin young people in primary care\nLiz Hare, Victoria Roberts, Nicholas P Hare and Faraz Mughal\nClinical Practice\nL Hare, GP, FRCSI, MRCGP, DFFP, PgDip, \nTudor Lodge Surgery, Weston-super-Mare; \nRCGP Adolescent Health Group. V Roberts \n(ORCID: 0000-0001-7540-1579), BSc, MBChB, \nacademic foundation year 2 doctor; NP Hare, \nMBChB, MSc, FHEA, academic foundation \nyear 2 doctor, University Hospitals Bristol and \nWeston Trust, Bristol; University of Bristol, \nBristol. F Mughal (ORCID: 0000-0002-5437-\n5962), DCH, MPhil, FRCGP, GP and NIHR \ndoctoral fellow, School of Medicine, Keele \nUniversity, Keele; RCGP Adolescent Health \nGroup.\nCorrespondence\nFaraz Mughal, School of Medicine, Keele \nUniversity, Keele ST5 5BG, UK.\nEmail: f.mughal@keele.ac.uk\nSubmitted: 3 July 2023; Editor’s response: \n10 August 2023; final acceptance: 31 October \n2023.\n©British Journal of General Practice 2023; 73: \n572–573.\nDOI: https://doi.org/10.3399/bjgp23X735837\n572  British Journal of General Practice, December 2023\n\nhormonal contraceptives (combined oral \ncontraceptive pill) or progesterone (for \nexample, levonorgestrel-intrauterine \nsystem) is recommended as first line. Non-\nsteroidal anti-inflammatory medications \nare suggested for pain at age-appropriate \ndoses where hormone therapy is not \nsuitable. Where endometriosis is confirmed \nand initial hormonal therapy unsuccessful, \nspecialist gynaecology services can consider \noffering young people gonadotropin-\nreleasing hormone (GnRH) agonists for up \nto 1 year after a full discussion of benefits \nand risks. \nWhere medical treatment has not \nhelped, surgical removal of endometriosis \nlesions by an experienced surgeon to \nmanage symptoms is suggested; however, \npostoperative hormone treatment may well \nbe needed to prevent symptom recurrence.2 \nNon-pharmacological interventions such as \npelvic physiotherapy and talking therapies \nmay help to reduce the impact of symptoms, \nalthough the evidence is weak.4\nAn outline of key actions for practitioners \nsuspecting endometriosis in a young person \nin primary care is shown in Box 1. \nCONCLUSION\nClinically, endometriosis is an enigmatic \ncondition with sequelae that range from \nminor discomfort to a frozen pelvis and \nlifelong pain. Updated National Institute \nfor Health and Care Excellence guidance \nis expected in December 2023 and will \nbe welcomed to provide clearer direction \nas more is being understood about this \ncondition. Primary care-initiated hormonal \ncontraception can be beneficial for young \npeople with suspected endometriosis as \nit downregulates endometrial activity and \nmay ameliorate pain. However, this should \nnot prevent a referral for confirmation.\nIt is important that families are involved \nwhere consent is gained. A holistic approach \nis imperative in guiding and supporting the \nindividual and family in the assessment and \ntreatment of possible endometriosis. \nFunding\nFaraz Mughal, Doctoral Fellow, is funded \nby the National Institute for Health and \nCare Research (NIHR) (300957). The views \nexpressed in this publication are those of \nthe authors, and not necessarily those of the \nNHS, the NIHR, or the Department of Health \nand Social Care.\nProvenance\nFreely submitted; externally peer reviewed. \nCompeting interests\nLiz Hare and Faraz Mughal are members of \nthe RCGP Adolescent Health Group. Liz Hare \nis a digital GP and works voluntarily for the \nNational Confidential Enquiry into Patient \nOutcome and Death as a Case Reviewer on \nthe Endometriosis and Transition project. \nLiz Hare works voluntarily for the UK \nDermatology Clinical Trials Network.\nDiscuss this article: bjgp.org/letters\nBritish Journal of General Practice, December 2023  573\nREFERENCES\n1. Sarria-Santamera A, Orazumbekova B, Terzic \nM, et al. Systematic review and meta-analysis \nof incidence and prevalence of endometriosis. \nHealthcare (Basel) 2020; 9(1): 29.\n2. Becker CM, Bokor A, Heikinheimo O, et al. \nESHRE guideline: endometriosis. Hum Reprod \nOpen 2022; 2022(2): hoac009.\n3. Young K, Fisher J, Kirkman M. Women’s \nexperiences of endometriosis: a systematic \nreview and synthesis of qualitative research. J \nFam Plann Reprod Health Care 2015; 41(3): \n225–234.\n4. Horne AW, Missmer SA. Pathophysiology, \ndiagnosis, and management of endometriosis. \nBMJ 2022; 379: e070750.\n5. Johnston JL, Reid H, Hunter D. Diagnosing \nendometriosis in primary care: clinical update. \nBr J Gen Pract 2015; DOI: DOI: https://doi.\norg/10.3399/bjgp15X683665.\nBox 1. Key actions\n•   To suspect endometriosis in a young person after exclusion of other appropriate aetiologies. \nEndometriosis can occur in young people: make use of advice and guidance/referral to gynaecology for \nprompt person-centred care. \n•   Ensure to respond compassionately to young people with concerns about endometriosis, validate pain, \nand recognise that symptoms can be cyclical or persistent. Consider offering aids such as a symptom \ntracker.\n•   Treat the young person and not the disease: check expectations on functioning in education or work, \nrelationships, timing, and preparation for starting a family. Use digital communication systems to share \npatient information from recognised sources such as Endometriosis.org.\n•   Prescribers should have a ‘can do’ attitude in initiating hormonal therapies with patient advice and \nsupport. These treatments can improve symptoms and allow the young person to function at work and in \neducation. \n•   Ensure that people with confirmed diagnosed endometriosis have clear explanations of the condition \nand access to specialists for long-term symptom control and discussions around conception, assisted \nreproductive technology, and the potential risk of obstetric complications. \n•   Encourage young people to use patient-initiated follow-up (PIFU) for accessing gynaecological services \nduring exacerbations. Primary care can offer initial clinical assessment and examination to support the \nPIFU discussion by responding to specific queries from gynaecology specialists.","source_license":"public-domain-us","license_restricted":false}