Living With Interstitial Cystitis: A Qualitative Study of Women's Experiences.
Camilla Olaussen, Trine-Lise Jansen
PMID 41195537WHAT IT FOUND
Eighteen Norwegian women with interstitial cystitis described pain, urinary urgency, fatigue and sleep loss taking over daily life.
Many said clinicians dismissed their pain or treated it as psychological. Diagnosis and tailored treatment were often delayed.
Key findings
01Frequent urinary urgency, severe pain, fatigue and disrupted sleep limited women's social functioning.
02Many women said healthcare professionals downplayed their ailments or attributed symptoms to psychological causes.
03For most women, there was a long delay between symptom onset, diagnosis and effective treatment, and some had to argue for treatment options.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Participants were self-selected from an online support forum, so the stories may not represent all women with IC. Age, marital status and geographical setting were not collected, so it is unclear how these factors shaped the accounts. Women who participated may have had more severe symptoms or particularly negative healthcare experiences. Findings are from Norwegian women and may not transfer to other healthcare systems or cultural contexts. The study describes experiences; it does not test whether any treatment or communication approach improves outcomes.
The easy way to misread this
Do not conclude that IC is psychological or that these accounts represent all women with IC. The study reports written experiences from 18 self-selected Norwegian women and does not test causes or treatment outcomes.