Experiences of pain debut and healthcare received in men with chronic pelvic pain syndrome

BACKGROUND: Chronic Pelvic Pain Syndrome (CPPS) is the occurrence of chronic pelvic pain when there is no proven infection or other obvious local pathology that may account for the pain. It is often associated with negative cognitive, behavioural, sexual or emotional consequences, as well as with symptoms of lower urinary tract, sexual or bowel dysfunction. As there is a close link between psychosocial factors and the development of myofascial pain syndromes it is important for healthcare professionals to have knowledge of how the pain begins and the activities at the debut of the symptoms. AIM: The aim of the study was to explore men’s experiences of the process leading to CPPS and healthcare received. METHODS: Information was obtained from semi-structured video interviews with 14 men with CPPS. Interviews were audio-recorded and transcribed. The text was then abstracted into codes and analysed with inductive content analysis. RESULTS: The age of the informants ranged between 22 and 73 (median 48), and the duration with CPPS ranged from 1 to 46 years. Two themes emerged, one with the heading Struggling to pin it down with four subthemes and The helpful and unhelpful healthcare with two subthemes. The four subthemes show that the informants experienced difficulties in their lives in the months before the debut of symptoms, for some it was several years. They had specific triggers for the onset of pain. These included cold, trauma to the perineum, chlamydia infection and possibly secondary to a symptomatic urethral stricture. Confusion and frustration were an important element in the informants’ overall experience of CPPS. Healthcare varied widely. The two subthemes about healthcare show expressions of being overlooked or wasting the doctor’s time, but also the experience of being validated and being thoroughly examined. CONCLUSION: The informants in our study described clear and specific triggers for CPPS such as being cold, having digestive issues and trauma to the perineum. Stressful events seemed to have a big impact on these informants and very possibly affected the start of symptoms. This information should be helpful healthcare professionals to understand the patient and his needs.