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.
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.
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.
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
8 out of 13 men conceived a child (with the use of their own sperm), 2 out of 4 women
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.
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