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An observational study on the sexual, genital and fertility outcomes in bladder exstrophy and epispadias patients

  • Emma Van den Eede
    Affiliations
    Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1 Wilrijk, Antwerp, 2610, Belgium
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  • Mira Sterckx
    Affiliations
    Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1 Wilrijk, Antwerp, 2610, Belgium
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  • Kato Vangelabbeek
    Affiliations
    Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1 Wilrijk, Antwerp, 2610, Belgium
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  • Charlotte Dunford
    Affiliations
    Department of Urology, University College London Hospitals, 16-18 Westmoreland Street, London, United Kingdom
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  • Anthony Noah
    Affiliations
    Department of Urology, University College London Hospitals, 16-18 Westmoreland Street, London, United Kingdom
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  • Dan Wood
    Affiliations
    Department of Urology, University College London Hospitals, 16-18 Westmoreland Street, London, United Kingdom

    Department of Urology at Children's Hospital Colorado – University of Colorado 13123 E 16th Ave, Aurora, CO 80045, USA
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  • Gunter De Win
    Correspondence
    Correspondence to: G. De Win, Department of Urology, Antwerp University Hospital, Drie Eikenstraat 655, 2650 Edegem, Belgium
    Affiliations
    Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1 Wilrijk, Antwerp, 2610, Belgium

    Department of Urology, University College London Hospitals, 16-18 Westmoreland Street, London, United Kingdom

    Department of Urology, Antwerp University Hospital, Drie Eikenstraat 655, 2650 Edegem, Belgium
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Published:October 12, 2022DOI:https://doi.org/10.1016/j.jpurol.2022.10.013

      Summary

      Introduction

      Bladder exstrophy and epispadias complex (BEEC) is a spectrum of congenital malformations ranging from an isolated epispadias to a full exstrophy. It is an uncommon disease and little is known on how patients cope with its implications later in life.

      Objective

      The goal of this study is to assess the sexual, continence and fertility outcomes of BEEC patients, who had reconstructive bladder surgery during childhood. Considering the sensitive nature of these topics, they are not easily spoken about in the doctor's office. Our aim is to shed some light on possible points of improvement in follow-up.

      Study design

      63 patients between 18 and 45 years old were sent an electronic questionnaire based on previous existing standardized questionnaires. They were asked about sexual and psychosexual wellbeing, urinary incontinence and fertility. Data from their medical files (medical history on previous surgeries). and questionnaire answers are linked through an anonymous subject number and put into an Excel file for descriptive representation.

      Results

      22 men and 8 women filled in the questionnaire. All but 2 are sexually active. Reasons to avoid sexual activity are equally divided as BEEC-related and non-BEEC-related. Sexual satisfaction is lower in the male group due to problems with erection, ejaculation, condom usage and embarrassment about physical appearance. In females problems concerning pain and reaching orgasm are mentioned.
      30% report depressive feelings. There is a clear correlation between number of reconstructive surgeries and sexual satisfaction.
      90% of patients urinate via catheterization, mostly through a Mitrofanoff connection. This leads to complications such as foul odors, infection, embarrassment and sexual dysfunction.
      8 out of 13 men conceived a child (with the use of their own sperm), 2 out of 4 women did.

      Discussion

      A strength of this study is the use of standardized questionnaires which allow comparison to a control patient group. Our study is one of the first to show how patients cope with the challenges of BEEC by the use of open questions. We see an overall high quality of life yet an important impact on mental health.

      Conclusion

      BEEC is associated with many challenges in the adult life of patients. A more holistic and interdisciplinary approach is needed to include sensitive topics in long term follow-up.

      Keywords

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