A Decade of Waiting: Experiences of Women Living With Vulvar Crohn's Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study

TY - JOUR

T1 - A Decade of Waiting

T2 - Experiences of Women Living With Vulvar Crohn's Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study

AU - Fourie, Simona

AU - Jackson, Debra

AU - Czuber-Dochan, Wladyslawa

AU - Norton, Christine

N1 - Funding Information: We acknowledge Crohn's and Colitis UK for their support to reach their members, by advertising our study on their research page. We are grateful to all participants who took part in the study Publisher Copyright: © The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.

PY - 2023/7/1

Y1 - 2023/7/1

N2 - Background: Vulvar Crohn's 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' experience of living with vulvar Crohn's. Methods: 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's disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen's phenomenology of practice framework informed analysis. Results: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn's 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. Conclusions: Women with vulvar Crohn's trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.

AB - Background: Vulvar Crohn's 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' experience of living with vulvar Crohn's. Methods: 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's disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen's phenomenology of practice framework informed analysis. Results: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn's 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. Conclusions: Women with vulvar Crohn's trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.

KW - extra-intestinal manifestation

KW - IBD

KW - patient experience

KW - vulvar Crohn's

UR - http://www.scopus.com/inward/record.url?scp=85161353439&partnerID=8YFLogxK

U2 - 10.1093/crocol/otad025

DO - 10.1093/crocol/otad025

M3 - Article

AN - SCOPUS:85161353439

SN - 2631-827X

VL - 5

JO - Crohn's and Colitis 360

JF - Crohn's and Colitis 360

IS - 3

M1 - otad025

ER -