Bladder exstrophy: We need to improve. A lot.

Area of Science:

• Urology
• Reconstructive Surgery
• Patient-Reported Outcomes

Background:

• Bladder exstrophy (BE) significantly impacts urinary continence, sexual function, and psychosocial well-being.
• Long-term, patient-centered data are crucial for understanding the real-life experiences of adults with BE.

Purpose of the Study:

• To evaluate the long-term sexual, psychosexual, and psychosocial outcomes in adult patients with bladder exstrophy.
• To gather patient perspectives on continence, sexual function, and overall quality of life after BE treatment.

Main Methods:

• A self-developed questionnaire was administered to adult members of the Brazilian Exstrophy Group.
• Data analysis included response rates, surgical history, continence status, sexual function, and patient-reported psychosocial issues.

Main Results:

• High rates of initial bladder closure failure (62%), augmentation cystoplasty (¾), and repetitive UTIs (64%).
• Most patients (88%) rely on clean intermittent catheterization (CIC) or remain incontinent; continence often requires multiple interventions.
• Males reported significant sexual problems (inhibition, penile inadequacy, abnormal ejaculation), while females experienced dyspareunia despite vaginoplasties; four women had successful pregnancies.

Conclusions:

• Continence in BE is often achieved through extensive interventions including bladder augmentation and CIC, though many adults remain incontinent.
• Sexual dysfunction and avoidance are prevalent, particularly in males, linked to self-image issues; selective esthetic procedures may improve social interaction.
• Adult BE patients require specialized lifelong care, addressing mental health, psychosocial needs, and expert guidance due to the complexity of the condition and treatment limitations.