Recontextualizing sexuality in chronic illness: women and interstitial cystitis

Interstitial cystitis (IC) is a chronic bladder condition that affects ten times more women than men. The major symptoms of IC include urinary frequency, urgency, and suprapubic pain. Dyspareunia is another common complaint. The construct of sexuality can best be understood in context, from the perspective of the study participants. To better understand the changes in sexuality experienced by women with IC, the findings from a survey of 138 women with IC are compared with responses from an earlier pilot interview with ten women with IC. Managing any chronic illness requires changes in many aspects of one's life, including activities, self-perceptions, relationships, and roles. Women with IC described what was important to them "as women" in the context of their current primary life values of health, love, and family. Changes in the sexual relationship were described in the context of the effects of having IC and the centrality of maintaining relationships. The healing potential of participation in support groups is discussed in relation to the women's desire to maintain independence and to help others with the disease.