{"paper_id":"7c69189b-f8d7-449e-8f04-7b9e9f285159","body_text":"Abstract\nDespite its considerable prevalence and significant economic and social impact, endometriosis is still relatively unknown, even among healthcare professionals, and somewhat underrepresented in the media. While one should devote all efforts to trying to learn more about such a complex disease like endometriosis, it is also crucial to dedicate some time to what we say about the disease, to whom, and how, particularly when the potential patients are adolescents.\nIn a context where patients, including adolescents, are taking the driver’s seat and playing a more empowered role in their own healthcare, this chapter aims to show how consistent and accurate communication regarding endometriosis, not only within the expert community but also between the experts and the remaining stakeholders, especially adolescent patients and their families, can effectively contribute to health literacy as well as to a more adequate management of this medical condition.\nAccess this chapter\nTax calculation will be finalised at checkout\nPurchases are for personal use only\nSimilar content being viewed by others\nNotes\n- 1.\n- 2.\n- 3.\nThis initiative was founded in 2013 by Drs. Camran, Farr, Ceana, and Azadeh Nezhat to “empower, educate and effect change.” Cf. https://www.endomarchnews.org/\n- 4.\n- 5.\nPOISE-03-4639-FSE-000084 (http://poise.portugal2020.pt/)\n- 6.\nReferences\nVercellini P, Fedele L, Arcaini L, et al. Laparoscopy in the diagnosis of chronic pelvic pain in adolescent women. J Reprod Med. 1989;34:827.\nKontoravdis A, Hassan E, Hassiakos D, et al. Laparoscopic evaluation and management of chronic pelvic pain during adolescence. Clin Exp Obstet Gynecol. 1999;26:76.\nGoldstein DP, De Cholnoky C, Emans SJ. Adolescent endometriosis. J Adolesc Health Care. 1980;1:37.\nLaufer MR. Gynecologic pain: dysmenorrhea, acute and chronic pelvic pain, endometriosis, and premenstrual syndrome. In: Emans SJ, Laufer MR, editors. Pediatric & adolescent gynecology. 6th ed. Philadelphia: Wolters Kluwer Lippincott Williams & Wilkins; 2012. p. 238.\nReese KA, Reddy S, Rock JA. Endometriosis in an adolescent population: the Emory experience. J Pediatr Adolesc Gynecol. 1996;9:125.\nLaufer MR, Goitein L, Bush M, et al. Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. J Pediatr Adolesc Gynecol. 1997;10:199.\nNezhat C, Nezhat F, Nezhat C. Endometriosis: ancient disease, ancient treatments. Fertil Steril. 2012;98(6):S1–S62.\nSimoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012;27(5):1292–9.\nKoltermann KC, Dornquast C, Ebert AD, Reinhold T. Economic burden of endometriosis: a systematic review. Ann Reprod Med Treat. 2017;2(2):1015.\nNezhat C, Nezhat F, Nezhat C, Seidman DS. Operative laparoscopy: redefining the limits. JSLS. 1997;1:213–6.\nGiudice L, Evers JLH, Healy DL. Endometriosis: science and practice. Oxford: Wiley-Blackwell; 2012.\nAcién P, Velasco I. Endometriosis: a disease that remains enigmatic. ISRN Obstet Gynecol. 2013;2013(4):242149.\nRogers P, Adamson GD, Al-Jefout M, et al. Research priorities for endometriosis. Reprod Sci. 2017;24(2):202–26.\nDun EC, Kho KA, Morozov VV, Kearney S, Zurawin JL, Nezhat CH. Endometriosis in adolescents. JSLS. 2015;19(2) https://doi.org/10.4293/JSLS.2015.00019.\nCosta R. Plurality of theoretical approaches to terminology. In: Picht H, editor. Modern approaches to terminological theories and applications. Bern: Peter Lang; 2006. p. 77–89.\nCarvalho S, Costa R, Roche C. The role of conceptual relations for the drafting of natural language definitions: an example from the biomedical domain. In: Kernerman I, Krek S, editors. Globalex 2018: lexicography and WordNets. Miyazaki: LREC 2018 Workshop; 2018.\nNnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011;96(2):366–373.e8.\nEC. eHealth action plan 2012–2020 – innovative healthcare for the 21st century. Brussels: European Commission; 2012.\nWHO & ITU. National eHealth strategy toolkit. Geneva: World Health Organization and International Telecommunication Union; 2012.\nAcknowledgments\nA part of this chapter includes research financed by Portuguese National Funding through the FCT (Fundação para a Ciência e Tecnologia) as part of the project Centro de Linguística da Universidade Nova de Lisboa, UID/LIN/03213/2019.\nAuthor information\nAuthors and Affiliations\nCorresponding author\nEditor information\nEditors and Affiliations\nRights and permissions\nCopyright information\n© 2020 Springer Nature Switzerland AG\nAbout this chapter\nCite this chapter\nCarvalho, S., Setúbal, A.M. (2020). Defining Endometriosis for Doctors and Patients. In: Nezhat, C.H. (eds) Endometriosis in Adolescents. Springer, Cham. https://doi.org/10.1007/978-3-030-52984-0_4\nDownload citation\nDOI: https://doi.org/10.1007/978-3-030-52984-0_4\nPublished:\nPublisher Name: Springer, Cham\nPrint ISBN: 978-3-030-52983-3\nOnline ISBN: 978-3-030-52984-0\neBook Packages: MedicineMedicine (R0)","source_license":"CC0","license_restricted":false}