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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References
- Modern management of the exstrophy-epispadias complex.Surg Res Pract. 2014; 2014 (2): 587064
- Sexual health outcomes in adults with complete male epispadias.J Urol. 2015; 194: 1091-1095
- Long-term follow-up of male patients after reconstruction of the bladder-exstrophy-epispadias complex: psychosocial status, continence, renal and genital function.J Pediatr Urol. 2010; 6: 6-10
- Psychosocial and psychosexual development in childhood and adolescence within the exstrophy-epispadias complex.J Urol. 2005; 174: 1094-1098
- Quality of life in female patients with bladder exstrophy-epispadias complex: long-term follow-up.J Pediatr Urol. 2016; 12: 210 e1-e6
- One - staged reconstruction of bladder exstrophy in male patients: long - term follow-up outcomes.Int Braz J Urol. 2017; 43: 155-162
- Sexual function and fertility issues in cases of exstrophy epispadias complex.Indian J Urol. 2010; 26: 595-597
- The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function.J Sex Marital Ther. 2000; 26: 191-208
- ICIQ: a brief and robust measure for evaluating the symptoms and impact of urinary incontinence.Neurourol Urodyn. 2004; 23: 322-330
- The international consultation on incontinence modular questionnaire: www.iciq.net.J Urol. 2006; 175 (; discussion 6): 1063-1066
- The female sexual function index: a methodological critique and suggestions for improvement.J Sex Marital Ther. 2007; 33: 217-224
- Changes in sexual attitudes and lifestyles in britain through the life course and over time: findings from the national surveys of sexual Attitudes and Lifestyles (natsal).Lancet. 2013; 382: 1781-1794
- Long-term sexual outcomes in patients with exstrophy-epispadias complex.Int J Impot Res. 2020; https://doi.org/10.1038/s41443-020-0248-2
- False-positive pregnancy tests following enterocystoplasty.BJOG. 2012 Feb; 119 (PMID: 22082173): 366-368https://doi.org/10.1111/j.1471-0528.2011.03031.x.Epub2011Nov15
- False-positive pregnancy tests in patients with enterocystoplasties.BJU Int. 2001 Jun; 87: 780-782https://doi.org/10.1046/j.1464-410x.2001.02187.x.PMID:11412213
- Associations between online pornography consumption and sexual dysfunction in young men: multivariate analysis based on an international web-based survey.JMIR Public Health Surveill. 2021 Oct 21; 7 (PMID: 34534092; PMCID: PMC8569536)e32542https://doi.org/10.2196/32542
- Trends in frequency of sexual activity and number of sexual partners among adults aged 18 to 44 Years in the US, 2000-2018.JAMA Netw Open. 2020 Jun 1; 3 (PMCID: PMC7293001)e203833https://doi.org/10.1001/jamanetworkopen.2020.3833.PMID:32530470
Article info
Publication history
Published online: October 12, 2022
Accepted:
October 8,
2022
Received in revised form:
October 6,
2022
Received:
March 9,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
