N12 A decade of waiting to know is not good enough! Experiences of women with vulval Crohn’s disease

Fourie, S.(1,2);Czuber-Dochan, W.(2);Jackson, D.(3);Norton, C.(2);

(1)University of Oxford, Nuffield Department of Medicine, Oxford, United Kingdom;(2)King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, London, United Kingdom;(3)University of Sydney, Faculty of Medicine and Health, Sydney, Australia


Vulval Crohn’s disease is a rare extra manifestation of inflammatory bowel disease, and there is no treatment consensus for it. Current evidence is mainly from case studies and includes only about 250 participants globally. We explored how vulval Crohn’s disease affects women’s sexual well-being, and aimed to understand what might be the specific experiences of sexuality in this group


Three participants from a phenomenological study exploring sexuality in inflammatory bowel disease have self-reported as diagnosed with vulval Crohn’s disease. Data collected from telephone interviews were analysed using thematic analysis.


Women with vulval Crohn’s disease reported a severe disease course with devastating consequences on their sexuality, and suffered years of delay in their diagnosis. Their experiences were summarised in four main themes:  Scarred by Crohn’s, Striving for normality, Waiting too long, and Who’s going to help? Sex posed extreme challenges imposed by the condition, and participants waited almost a decade to get a diagnosis, which negatively affected their trust in clinicians. In their effort to continue to enjoy a sexual life as normal as possible, they had feared for the future, as they felt healthcare professionals were unsure of who should help those living with vulval Crohn’s disease.


In spite of specialists having knowledge of vulval Crohn’s disease, participants experienced lengthy periods to get a diagnosis, with damaging consequences for their lives. Discussing sexual well-being in clinical settings may increase chances of early detection and avoid worsening symptoms.