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Bladder exstrophy: We need to improve. A lot.

Lisieux Eyer de Jesus1, Samuel Dekermacher1, João Luiz Pippi-Salle2

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Summary

Bladder exstrophy (BE) patients often achieve continence through multiple surgeries and self-catheterization, but face significant sexual and psychosocial challenges. Adult BE survivors require specialized care for long-term well-being and improved quality of life.

Keywords:
Bladder augmentationBladder exstrophyBladder lithiasisContinenceLong-termSexual health

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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.