{"paper_id":"5de5c069-2ad1-4a23-9f88-ab2bfa2937d9","body_text":"E O Mecha et al. C40–C43\n3:3\nCOMMENTARY\nEndometriosis among African women\nEzekiel O Mecha 1, Joseph N Njagi2, Roselydiah N Makunja1, Charles O A Omwandho1,3, Philippa T K Saunders 4 \nand Andrew W Horne 4\n1Department of Biochemistry, University of Nairobi, Nairobi, Kenya\n2Marple Grove Gynecological Centre, Kerugoya, Kenya\n3Kirinyaga University, Kerugoya, Kenya\n4EXPPECT Centre, Queen’s Medical Research Institute, Edinburgh Bioquarter, The University of Edinburgh, Edinburgh, UK\nCorrespondence should be addressed to E O Mecha: emecha@uonbi.ac.ke\nAbstract\nEndometriosis has long been wrongly perceived to be rare among women of African descent. The misconception about \nthe prevalence of endometriosis among African women has significantly contributed to long diagnostic delays, limited \naccess to diagnosis and care, and a scarcity of research on the condition among African women. In this commentary, we \nhighlight the prevalence of endometriosis among African women, the state of endometriosis care in Africa, and the gaps \nin knowledge that need to be addressed. Based on the available data, the prevalence of endometriosis in Africa is likely \nhigher than previously thought, with varying subtypes. There is a long diagnostic delay of endometriosis among African \nwomen. Additionally, endometriosis care in Africa from the general population and health practitioners is poor; this \ncan be attributed to the high diagnostic cost, scarcity of trained specialists, as well as patients’ inability to express their \nsymptoms due to societal taboos surrounding menstrual health. Public sensitization on endometriosis may help improve \nendometriosis diagnosis and care in Africa.\nLay summary\nEndometriosis is a condition in which tissue like the uterine lining is found outside the uterus, causing women to \nexperience pain especially before, during, or after menstruation. Although endometriosis affects an estimated 176 million \nwomen worldwide, it has been wrongly reported that endometriosis is a rare condition among African women, mainly \ndue to lack of awareness among healthcare providers and historical bias. In the current commentary, we discuss the \nprevalence of endometriosis, the diagnostic delays, and the care of endometriosis among black African women living \nin the African continent. Much of the literature has demonstrated (falsely) that endometriosis is rare in Black women \ncompared to White ethnicity. African women experience a long diagnostic delay and do not receive appropriate care. \nPublic awareness of endometriosis may help improve diagnosis delay and endometriosis care in Africa.\nKeywords:  endometriosis   diagnostic delay   endometriosis care   African women\nReproduction and Fertility (2022) 3 C40–C43\nKey points\n • The prevalence of endometriosis in women in Africa \nis unknown.\n • Women in Africa with symptoms caused by \nendometriosis experience barriers to diagnosis.\n-22-0040ID: XX-XXXX; \n3 3\nThis work is licensed under a Creative Commons \nAttribution-NonCommercial-NoDerivatives 4.0 \nInternational License.\nhttps://doi.org/10.1530/RAF-22-0040\nhttps://raf.bioscientifica.com © 2022 The authors\nPublished by Bioscientifica Ltd\nDownloaded from Bioscientifica.com at 06/14/2026 12:04:54AM\nvia Open Access. This work is licensed under a Creative Commons\nAttribution-NonCommercial-NoDerivatives 4.0 International License.\nhttps://creativecommons.org/licenses/by-nc-nd/4.0/\n\n\nE O Mecha et al.\nC413:3\n • Development and implementation of treatments \nsuitable for African women have been hampered by a \nlack of research in local populations.\n • Social and societal factors need to be addressed to \nnormalize dialogue about menstrual disorder and \nimprove the dignity of women.\nIntroduction\nEndometriosis, one of the most common gynecological \nconditions affecting women, has been generally perceived \nto be rare among African women (Kyama et al. 2007). Several \nfactors have been implicated: a lack of awareness among \nthe public and healthcare practitioners, poor access to \ndiagnostic and therapeutic facilities, as well as inadequate \nresearch on the condition among African populations \n(Kyama et al. 2007). Differences in culture and lifestyle in \nwomen living in Africa compared with Europe including \nearlier age at first pregnancy, multiple pregnancies with \nlarge families, higher risk of pelvic inflammatory disease, \nand taboos surrounding menstruation and pain have \nalso been cited ( Wiswedel & Allen 1989 ). We believe \na combination of these factors may impact the risk \nfactors and health outcomes for African women with \nendometriosis which currently remain poorly understood.\nOver the next years, it is predicted that increased access \nto education and changes in cultural practice will result in \na delay in the first pregnancy and a reduction in family size \namong African women residing in the African continent. \nGiven the strong association between increased exposure to \nmenstrual flow (via fallopian tubes or vasculature) and risk \nof endometriosis, it is of concern that this may predispose \nAfrican women to the earlier onset or more severe disease \n(Zondervan et al. 2020). In this commentary, we consider \nthe published evidence related to endometriosis care in \nAfrica and the gaps in knowledge that need to be addressed.\nPrevalence of endometriosis in Africa\nThe exact prevalence rate of endometriosis in Africa is \nunknown with different studies reporting conflicting \nresults between different countries. A study carried out \nin South Africa on factors contributing to infertility \nreported that the prevalence of endometriosis among the \nblack population was lower (2%) than that of the White \npopulation (7%) ( Wiswedel & Allen 1989 ). However, in a \ncross-sectional study in Nigeria, Fawole et al. (2015) reported \na prevalence of 48.1% in women having a diagnostic \nlaparoscopy, stating it was one of the highest prevalence \nrates in Africa. The difference in prevalence reported by \nthe different authors may be attributed to several factors \nincluding access to healthcare, differences in methods used \nto determine and diagnose endometriosis, classification \nof the condition, and the number of individuals involved \nin the studies. Additionally, the paucity of research on \nendometriosis among women of different races and social \nstatuses is likely to be a key contributing factor to the \ndifferent prevalence rates reported (Kyama et al. 2007).\nWomen living in Africa, as opposed to those of African \ndescent living in countries such as the USA, are under-\nrepresented in the genetic studies which have identified \ncommon genetic risk factors associated with high-grade \ndisease (Zondervan et al. 2020).\nDiagnostic delay\nDiagnostic delay of endometriosis is seen globally on \naverage 7–10 years, but this delay is a major challenge faced \nby women in Africa which is exacerbated by lack of trained \nspecialists who can accurately diagnose endometriosis in its \nearly stages (Kyama et al. 2007) and lack of education about \nthe symptoms of endometriosis among African women \nand healthcare workers ( Kyama et  al. 2007 ). An acute \nproblem is the need to break down taboos and increase \nthe range of accessible information so that women and \nhealthcare providers are better able to discuss issues related \nto menstruation, infertility, pain symptoms, and when \nto seek medical attention. In a semi-structured interview \nconducted with 25 South African women diagnosed with \nendometriosis, most participants stated that they had little \nor no knowledge about endometriosis; thus, they relied \non the information provided by the healthcare providers, \nwhich in some cases was not sufficient ( Nnoaham et  al. \n2 011).\nThe first East and Southern Africa regional symposium \non improving menstrual health management for adolescent \ngirls and women held in 2018 highlighted key challenges \nincluding unmet needs, negative social norms, and \nbeliefs, as well as stigma and discrimination ( Department \nof Women in the Presidency of the Republic of South \nAfrica & UNFPA East and Southern Africa Regional Office \n2017). Specifically in African culture, issues surrounding \nmenstruation are considered personal and this means that \nwomen often do not feel free to discuss anything unusual \nabout their menstrual cycle for fear of stigmatization \nleading to diagnostic delay even if symptoms are severe. \nThe report also noted that there was both limited data and \nThis work is licensed under a Creative Commons \nAttribution-NonCommercial-NoDerivatives 4.0 \nInternational License.\nhttps://doi.org/10.1530/RAF-22-0040\nhttps://raf.bioscientifica.com © 2022 The authors\nPublished by Bioscientifica Ltd\nDownloaded from Bioscientifica.com at 06/14/2026 12:04:54AM\nvia Open Access. This work is licensed under a Creative Commons\nAttribution-NonCommercial-NoDerivatives 4.0 International License.\nhttps://creativecommons.org/licenses/by-nc-nd/4.0/\n\n\nE O Mecha et al.\nC423:3\n‘silence’ on vaginal bleeding not related to menstruation, \nwhich can be associated with conditions such as fibroids, \nendometriosis, and post-partum bleeding. One of the \nconclusions from the meeting was to highlight the urgent \nneed for improved education of healthcare workers and \nmenstruating women on what constitutes normal and \nabnormal vaginal bleeding.\nSubtypes of endometriosis that have been \nreported among African women\nSeveral studies have reported subtypes of endometriosis \namong African women. A study in Ghana reported a \ncase of catamenial pneumothorax in which the patient \nexperienced painless abdominal distention during her \nmenses ( Okyere et  al. 2019 ). The case was first treated \nas dysmenorrhea because it was not associated with \ngastrointestinal symptoms. Another study in Ghana \ninvolving 12 women reported pneumothorax (50%), \nhemothorax (41.7%), and hemopneumothorax (8.3%) \n(Okyere et al. 2019). In Nigeria, a case of chronic intestinal \nobstruction due to rectosigmoid endometriosis was \nreported in a 29-year-old woman ( Tade 2006 ). These \nreports show that forms of endometriosis considered rare \nin European and other countries outside Africa are being \ndetected in African women and suggest that the more \ncommon forms of endometriosis that present with milder \nor less obvious symptoms are being underreported. The \nreports presented may suggest that African women present \nonly with more severe symptoms but tend not to seek \nmedical attention with dysmenorrhea.\nImpacts of endometriosis\nEndometriosis severely impacts the quality of life of those \naffected. Feelings of distress, moodiness, frustration, \nisolation, low self-esteem, and hopelessness have been \nreported among African women with endometriosis \n(Nnoaham et  al.  2 011). Often these feelings are linked to \nthe pain they experience, difficulties in managing the pain, \nand are compounded by a lack of understanding regarding \nsymptomatic endometriosis ( Nnoaham et  al.  2 011). A \nstudy on the biopsychosocial predictors of the symptoms \nof depression in 25 South African women diagnosed \nwith endometriosis reported that 43.1% of the women \nsuffered from moderate to severe symptoms of depression, \nreporting impacts on physical functioning, as well as \nnegative feelings about the medical profession ( Nnoaham \net  al.  2 011). The women said endometriosis affected their \nsexual life due to fear of painful intercourse, forcing them \nto avoid it. Although some participants acknowledged the \nsupport they received from their partners, some noted \nthat their partners were suspicious of their reluctance to \nhave sex leading to conflicts and relationship breakdown \n(Nnoaham et al.  2 011).\nTreatment and care\nThere is a wide variation on the standards of care \nexperienced by women with endometriosis in Africa. \nRoomaney and Kagee ( Nnoaham et  al.  2 011), reporting \non a sample of South African women diagnosed with \nendometriosis, recorded that they experienced difficulties \nin explaining their symptoms and asking questions with \nthe fear that they will appear ignorant. They also noted \nthat women who had access to private healthcare found \nlaparoscopy to be expensive, while those who sought \ncare from public facilities had to wait for long periods for \ndiagnostic laparoscopy and surgery to treat endometriosis \n(Nnoaham et  al.  2 011). Additionally, they noted other \nconcerns such as poor access to treatment, limited \ntreatment options, incorrect diagnosis, and the side effects \nthat are associated with some of the treatments (Nnoaham \net al.  2 011). There are anecdotal reports that most African \nwomen resort to nonmedical therapies such as traditional \nherbal medicines and nutritional and behavioral therapies \nto manage chronic pelvic pain due to endometriosis. \nHowever, there are only limited studies on the effectiveness \nof herbal medicines and their use ( Kyama et  al. 2007). Of \nnote is that access to, or use of, existing medical therapies, \nwas not favored because they are expensive and most \nof them act as contraceptives, which were at odds with \nsocietal emphasis on fertility (Kyama et al. 2007).\nConclusion\nThe prevalence of endometriosis in Africa is likely to \nbe far higher than currently reported and may rise as \nwomen delay childbearing. Information about genetic \nrisk factors is lacking as women residents in Africa have \nbeen underrepresented in family linkage and genetic \nassociation studies. Diagnostic delay is a major problem \nfor symptomatic women, and this is complicated by \nvariations in access to healthcare as well as awareness \namong healthcare professionals. Thus, there is a need \nfor further research including potential phenotypic \nThis work is licensed under a Creative Commons \nAttribution-NonCommercial-NoDerivatives 4.0 \nInternational License.\nhttps://doi.org/10.1530/RAF-22-0040\nhttps://raf.bioscientifica.com © 2022 The authors\nPublished by Bioscientifica Ltd\nDownloaded from Bioscientifica.com at 06/14/2026 12:04:54AM\nvia Open Access. This work is licensed under a Creative Commons\nAttribution-NonCommercial-NoDerivatives 4.0 International License.\nhttps://creativecommons.org/licenses/by-nc-nd/4.0/\n\n\nE O Mecha et al.\nC433:3\nvariation of endometriosis in this population and the \ngoals of care for the patients. The first East and Southern \nAfrica regional symposium on improving menstrual \nhealth management for adolescent girls and women made \nseveral important recommendations including the need \nfor better communication and community involvement \nof traditional and religious leaders as a vital step toward \nchanging perceptions, healthcare practices, and reducing \nsocietal and social stigma surrounding menstrual health. \nEstablishing such programs is important because it will \nhelp in the normalization of menstruation and promotion \nof self-dignity, self-esteem, and self-worth among African \nwomen. In addition, cross-regional collaboration, \ninternational collaborations and the establishment of \nhealth programs are important approaches in contributing \nto quality assurance in research and medical care and to \nimproving endometriosis perception in society.\nDeclaration of interest\nThe authors declare that there is no conflict of interest that could be \nperceived as prejudicing the impartiality of this commentary.\nFunding\nThis work did not receive any specific grant from any funding agency in the \npublic, commercial, or not-for-profit sector.\nData availability statement\nThe data presented in this study are available on request from the \ncorresponding author.\nAuthor contribution statement\nCollection of manuscripts and proofreading (E O M, A W H, P T K S), \nsuggestions and proofreading (J N N, C O A O, R M), writing and proofreading \n(R M, J N N, E O M, A W H, P T K S) and whole concept, literature search, \nwriting, proofreading, and statistical analysis (E O M, A W H, P T K S). All \nauthors have read and agreed to the published version of the manuscript.\nReferences\nDepartment of Women in the Presidency of the Republic of South Africa \n& UNFPA East and Southern Africa Regional Office 2018 First East \nand Southern Africa Regional Symposium Improving Menstrual Health \nManagement for Adolescent Girls and Women. Department of Women \nin the Presidency of the Republic of South Africa & UNFPA East and \nSouthern Africa Regional Office.\nFawole AO, Bello FA, Ogunbode O, Odukogbe ATA, Nkwocha GC, \nNnoaham KE, Zondervan KT, Akintan A, Abdus-Salam RA & \nOkunlola MA 2015 Endometriosis and associated symptoms among \nNigerian women. International Journal of Gynaecology and Obstetrics \n130 190–194. (https://doi.org/10.1016/j.ijgo.2015.02.030)\nKyama CM, Mwenda JM, Machoki J, Mihalyi A, Simsa P ,  \nChai DC & D’Hooghe TM 2007 Endometriosis in African  \nwomen. Women’s Health 3 629–635. 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South African Medical Journal 76 65–66.\nZondervan KT, Becker CM & Missmer SA 2020 Endometriosis. New \nEngland Journal of Medicine 382 1244–1256. (https://doi.org/10.1056/\nNEJMra1810764)\nReceived in final form 1 1 June 2022\nAccepted 5 September 2022\nAccepted Manuscript published online 5 September 2022\nThis work is licensed under a Creative Commons \nAttribution-NonCommercial-NoDerivatives 4.0 \nInternational License.\nhttps://doi.org/10.1530/RAF-22-0040\nhttps://raf.bioscientifica.com © 2022 The authors\nPublished by Bioscientifica Ltd\nDownloaded from Bioscientifica.com at 06/14/2026 12:04:54AM\nvia Open Access. This work is licensed under a Creative Commons\nAttribution-NonCommercial-NoDerivatives 4.0 International License.\nhttps://creativecommons.org/licenses/by-nc-nd/4.0/","source_license":"CC0","license_restricted":false}