An exploration into the conversations around sexual functioning that males with Sjögren’s syndrome have on an internet forum

Background: Sjögren’s Syndrome (SS) is an autoimmune rheumatic disease that targets secretion glands throughout the body, causing symptoms of oral, ocular and genital dryness (van de Merwe, 2010). A small body of literature has investigated the impact of SS on women’s sexual functioning, however, no research currently exists that has explored this topic in males with SS. Gathering a snapshot of issues may prove difficult given the sensitivity of the topic. Therefore, data must be gathered from sources where individuals may have the confidence to talk openly. Research has shown that many patient groups turn to internet forums to discuss sensitive issues under the cloak of anonymity (White & Dorman, 2001). Analysing this source of data allows us to explore the conversations pertaining to sexual functioning that males with SS may not feel comfortable discussing in a traditional qualitative setting, and may be instrumental in guiding future intervention strategies. Objectives: To explore the conversations around sexual functioning that male users with SS have on an internet forum. Methods: A large publicly accessible internet forum that individuals with a diagnosis of SS used to discuss issues and share experiences with other users was selected. Thread names and post content were scraped using a web scraping tool, and posts identified as containing relevant keywords were exported into Excel. Braun & Clarke’s (2006) thematic analysis was used to analyse post content. Results: A total of 78 posts were identified as being pertinent to the topic of male sexual functioning. Conversations were predominately centred on symptom presence in the reproductive organs. Forum users discussed having fluctuating pain in the testicles, scrotum, groin, anus, and rectum. They also reported experiencing feelings of dryness at the base of the penis, around the testicles, under the foreskin, around the glans of the penis and in the anus. Discussions were also had about changes in the volume and consistency of seminal fluid released either prior to or during ejaculation. Another conversation theme revolved around how the symptoms they experienced affected their ability to engage in sexual intercourse. Forum users discussed how pain and dryness made sexual intercourse painful, resulting in them withdrawing from sexual activity indefinitely. Discussions were also had about the lack of information available to help understand and manage sexual dysfunction. Forum users discussed how feelings of embarrassment about the nature of the symptoms and the stigma of it being “a woman’s disease” kept them from seeking medical assistance. Those who had sought medical assistance shared their belief that health professionals (HPs) were misdiagnosing their symptoms and were prescribing ineffective treatments. They also reported that their HPs were dismissive of symptoms and unwilling to assist further. Conclusion: Utilising conversations from an internet forum was an effective method to use to gain insight into some of the issues that males with SS experience with sexual functioning. The absence of accessible information and lack of support from HPs for males with SS is hinted at in this research. Future research should focus on identifying issues surrounding male sexual functioning as this will both guide future intervention strategies and allow HPs to publish material to better support males with SS. REFERENCES: [1]Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77-101. [2]van de Merwe, J. P. (2010). Sjögren’s Syndrome: Information for patients and professionals. Rotterdam: Erasmus MC. [3]White, M., & Dorman, S. M. (2001). Receiving social support online: Implications for health education. Health Education Research, 16 (6), 693-707.