Background: To describe the oral treatments people living with interstitial cystitis/bladder pain syndrome (IC/BPS) are using to treat their urologic condition in the UK.Method: A questionnaire hyperlink encompassing current and previous medications taken for IC/BPS with other sociodemographic and diagnostic indices was available to the Bladder Health UK website. Interested and fully consented individuals accessed and completed the survey.Results: A total of 601 accessed the questionnaire of whom 173 participants responded (response rate: 28.7%) with a mean ± SD O'Leary/Sant scores of 20.12 ± 9.38. A sample size of 171 was estimated to be used in the survey. A fifth of the participants were not on any treatment at all. Amitriptyline was the most prevalent medication in use both alone and in combination. A shift in the use of unapproved (for IC/BPS) antidepressant, smooth muscle relaxant, opioids, gabapentenoids, and antibiotics was observed in the sample. There were no significant differences between the mean (SD) O'Leary/Sant scores of cohorts currently taking oral medications and those not taking it. More than two-thirds of the participants had been diagnosed with the disease more than 5 years. Just under a half (47.4%) of participants reported a history of allergy.
Conclusion:Our study provides contemporary evidence that the treatments used for managing IC/BPS encompass a broad range of medications both recommended and not recommended by current guidelines. The latter suggests patients are willing to try novel treatments when more conventional ones are ineffective.amitriptyline, comorbidity, interstitial cystitis/pain bladder syndrome, oral treatments
| INTRODUCTIONInterstitial cystitis/bladder pain syndrome (IC/BPS) is a poorly understood disorder of the urinary bladder. Despite affecting millions of people around the world, there is no known cure. 1,2 The difficulty in both understanding and diagnosing the disease is partly due to the varying symptoms under which it may present. These, in turn, are a direct consequence of the different types of aetiologies held to be responsible for the disease. 3
Objective: To evaluate disease perception in a cohort of patients with interstitial cystitis/painful bladder syndrome (IC/PBS) using the Brief Illness Perception-Questionnaire (BIP-Q) and to evaluate how this might relate to disease severity.How to cite this article: Garba K, Avery M, Yusuh M, et al. The relationship between illness perception and worsening of interstitial cystitis/ painful bladder syndrome symptoms: A cross sectional study.
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