title: Sexual function in adult patients with classic bladder exstrophy: A multicenter study.
abstract: BACKGROUND
  The bladder exstrophy-epispadias complex (BEEC) comprises a spectrum of congenital anomalies that represents the severe end of urorectal malformations, and has a profound impact on continence as well as sexual and renal functions.
  
  
  OBJECTIVE
  The relation between severity of BEEC and its associated functional impairments, on one hand, and the resulting restrictions in quality of life and potential psychopathology determine the patients' outcome. It is important for improving further outcome to identify BEEC-related sources of distress in the long term. Genital function and sexuality becomes an important issue for adolescent and adult BEEC individuals. Hence, the present study focused on sexual function and psychological adaption in patients with BEEC.
  
  
  METHODS
  In a multicenter study 52 patients (13 females, 39 males) with classic bladder exstrophy (BE) with their bladders in use were assessed by a self-developed questionnaire about sexual function, and psychosexual and psychosocial outcome. The patients were born between 1948 and 1994 (median age 31 years).
  
  
  RESULTS
  Twelve of 13 (92%) females and 25 of 39 (64%) males with classic BE had answered the questions on sexual function. Of these, 50% females and 92% males answered that they masturbated. Females had sexual intercourse more frequently. Six (50%) females affirmed dyspareunia whereas only two (8%) males reported pain during erection. Eight (67%) females specified having orgasms. Eighteen (72%) males were able to ejaculate. Two males and none of the females lived in a committed partnership (Figure). Two (15%) females and 13 (33%) males answered all psychosocial questions. The majority of these patients had concerns about satisfactory sexuality and lasting, happy partnerships. A minority of patients of both sexes were willing to answer psychosocial questions. Sexual activity and relationships of many adult BE patients seems to be impaired. Not surprisingly, sexual activity and awareness were different in males and females even in a multi-organ anomaly.
  
  
  CONCLUSIONS
  To date, one of the main goals of the medical treatment of BEEC/BE patients is to enable normal sexual life and fertility. However, only a few outcome studies have focused on these issues with contradicting results, most of them not using standardized outcome measures. In accordance with other studies, our female BE patients have dyspareunia and most of our male BE patients were able to ejaculate. But the question of normal force of ejaculation, ejaculated volume, or semen analysis remains unanswered. Despite partial confirmation of previous findings, there is inconsistency referring to the outcome measured by the available studies. This might in part be explained by the fact that, other than this study, most previous studies are the result of single-institution experience. Thus, selection bias in the patient sampling due to different a clinical collective in different hospitals may be the consequence. Furthermore, patients' honesty and self-reflection in answering difficult questions regarding their sexual and cosmetic impairments is questionable. In addition, studies include a wide range of age groups and are connected with this life period. Fears and condition-specific anxieties might change over time. Hence, the strengths of this study are the nationwide and treating physician-independent data acquisition as well as the large sample size of adult patients with a very rare congenital malformation. Unfortunately, more detailed analyses on sexual function and current psychosocial situation, for example correlation of data with clinical symptoms such as continence status, was not possible as data were mainly not answered by patients.
  
  
  CONCLUSIONS
  To improve the quality of life of patients with BEEC/BE, treatment and follow-up should emphasize physical but also psychological care in these patients. Physicians should further re-evaluate their preconceptions and should take care of the patients throughout their lives.
authors.affiliation: Helios Center for Pediatric Surgery, Berlin, Germany.
authors.forename: Weon
authors.initials: W
authors.lastname: Park
authors.affiliation: Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Germany.
authors.forename: Nadine
authors.initials: N
authors.lastname: Zwink
authors.affiliation: Department of Pediatric Urology, University Medical Center Regensburg, Germany.
authors.forename: Wolfgang H
authors.initials: WH
authors.lastname: Rösch
authors.affiliation: Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Germany.
authors.forename: Eberhard
authors.initials: E
authors.lastname: Schmiedeke
authors.affiliation: Division of Pediatric Urology, Department of Urology, University of Mainz, Medical School, Germany.
authors.forename: Raimund
authors.initials: R
authors.lastname: Stein
authors.affiliation: Department of Pediatric Surgery, Charité Universitätsmedizin Berlin, Germany.
authors.forename: Dominik
authors.initials: D
authors.lastname: Schmidt
authors.affiliation: Department of Pediatrics, Pediatric Psychology, University of Bonn, Germany.
authors.forename: Meinolf
authors.initials: M
authors.lastname: Noeker
authors.affiliation: Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Germany; Department for Child and Adolescent Psychiatry, Johannes Gutenberg-University, Germany.
authors.forename: Ekkehart
authors.initials: E
authors.lastname: Jenetzky
authors.affiliation: Institute of Human Genetics, University of Bonn, Germany; Department of Neonatology, Childrens' Hospital, University of Bonn, Germany.
authors.forename: Heiko
authors.initials: H
authors.lastname: Reutter
authors.affiliation: Department of Urology and Pediatric Urology, University of Ulm, Germany. Electronic address: anne-karoline.ebert@uniklinik-ulm.de.
authors.forename: Anne-Karoline
authors.initials: AK
authors.lastname: Ebert
mesh_terms: D000293:Adolescent; D000328:Adult; D001746:Bladder Exstrophy / Q000150:complications* / Q000523:psychology*; D004414:Dyspareunia / Q000150:complications / Q000523:psychology; D004542:Ejaculation; D004842:Epispadias / Q000150:complications / Q000523:psychology; D005260:Female; D005858:Germany; D006801:Humans; D008297:Male; D008875:Middle Aged; D009948:Orgasm; D011788:Quality of Life; D012725:Sexual Behavior / Q000502:physiology* / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Bladder exstrophy; Bladder exstrophy–epispadias complex; CURE-Net; Quality of life; Sexual function