{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,8]],"date-time":"2026-01-08T00:43:30Z","timestamp":1767833010911,"version":"3.49.0"},"reference-count":24,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2023,5,12]],"date-time":"2023-05-12T00:00:00Z","timestamp":1683849600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,7,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Vulvar Crohn\u2019s disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients\u2019 experience of living with vulvar Crohn\u2019s.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn\u2019s disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen\u2019s phenomenology of practice framework informed analysis.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn\u2019s warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Women with vulvar Crohn\u2019s trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/crocol\/otad025","type":"journal-article","created":{"date-parts":[[2023,5,12]],"date-time":"2023-05-12T08:01:14Z","timestamp":1683878474000},"source":"Crossref","is-referenced-by-count":2,"title":["A Decade of Waiting: Experiences of Women Living With Vulvar Crohn\u2019s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study"],"prefix":"10.1093","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5702-560X","authenticated-orcid":false,"given":"Simona","family":"Fourie","sequence":"first","affiliation":[{"name":"Radcliffe Department of Medicine, University of Oxford , Oxford , UK"},{"name":"Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King\u2019s College London , London , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Debra","family":"Jackson","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, University of Sydney, Sydney , Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wladyslawa","family":"Czuber-Dochan","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King\u2019s College London , London , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Norton","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King\u2019s College London , London , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2023,5,12]]},"reference":[{"issue":"1","key":"2023052518121338200_CIT0001","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1016\/j.ijsu.2009.09.012","article-title":"Crohn\u2019s disease of the vulva","volume":"8","author":"Andreani","year":"2010","journal-title":"Int J Surg"},{"key":"2023052518121338200_CIT0002","doi-asserted-by":"crossref","first-page":"2050313x1986839","DOI":"10.1177\/2050313X19868390","article-title":"Cutaneous Crohn\u2019s disease of the vulva after a total colectomy and without gastrointestinal manifestations: a case report","volume":"7","author":"Bohdanowicz","year":"2019","journal-title":"SAGE Open Med Case Reports"},{"issue":"3","key":"2023052518121338200_CIT0003","doi-asserted-by":"crossref","first-page":"263","DOI":"10.1159\/000495000","article-title":"Delayed diagnosis of vulvar Crohn\u2019s disease in a patient with no gastrointestinal symptoms","volume":"10","author":"Wells","year":"2018","journal-title":"Case Rep Dermatol"},{"issue":"7","key":"2023052518121338200_CIT0004","doi-asserted-by":"crossref","first-page":"563","DOI":"10.1016\/j.crohns.2013.10.009","article-title":"Crohn\u2019s disease of the vulva","volume":"8","author":"Barret","year":"2014","journal-title":"J Crohn\u2019s Colitis"},{"issue":"Nov","key":"2023052518121338200_CIT0005","doi-asserted-by":"crossref","first-page":"2296","DOI":"10.14309\/ajg.0000000000001502","article-title":"Vulvar Crohn\u2019s disease: clinical features and outcomes","volume":"116","author":"Cho","year":"2021","journal-title":"Am J Gastroenterol"},{"issue":"4","key":"2023052518121338200_CIT0006","doi-asserted-by":"crossref","first-page":"305","DOI":"10.5847\/wjem.j.1920-8642.2017.04.011","article-title":"Vulvar inflammation as a manifestation of Crohn\u2019s disease","volume":"8","author":"Abboud","year":"2017","journal-title":"World J Emerg Med"},{"issue":"1","key":"2023052518121338200_CIT0007","doi-asserted-by":"crossref","first-page":"88","DOI":"10.1111\/j.1365-2230.2008.02762.x","article-title":"Penile lymphoedema in association with asymptomatic Crohn\u2019s disease","volume":"34","author":"Saha","year":"2009","journal-title":"Clin Exp Dermatol"},{"key":"2023052518121338200_CIT0008","volume-title":"Researching Lived Experience. 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