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PubMed This is a summary of 25 peer-reviewed journal articles Updated
Urology

Long-Term Monitoring and Life with Classic Bladder Exstrophy

At a Glance

Classic Bladder Exstrophy (CBE) requires lifelong monitoring to protect kidney function, manage stone risks, and screen for urinary tract changes. Successful long-term care also involves proactive support for psychosexual health, fertility, and transitioning from pediatric to adult urology care.

The journey with Classic Bladder Exstrophy (CBE) is a lifelong process of monitoring and adaptation. While the early years are focused on reconstruction, the long-term goal is to ensure your child lives a healthy, independent, and fulfilling adult life [1]. Because CBE affects the urinary tract, kidneys, and reproductive organs, regular follow-up with a specialized team is essential into adulthood [2][3].

Lifelong Kidney and Bladder Surveillance

The kidneys are the most critical organs to monitor. Over time, factors like high pressure in the bladder, recurrent infections, or surgical changes can affect kidney function [4][5].

  • Renal Health: Your child will need regular renal ultrasounds to check for swelling (hydronephrosis) or scarring [6]. Blood tests (like eGFR) and newer urine biomarkers like NGAL are used to catch early signs of kidney stress [7][8].
  • Stone Risk: Children and adults with CBE have a higher risk of developing urinary calculi (bladder or kidney stones), especially if they have a “continent reservoir” or have had bladder augmentation [9][10].
  • Cancer Screening: While rare, individuals with a history of exstrophy (especially those with certain types of urinary diversions) have an increased risk of bladder or urinary tract cancer later in life [11][12]. Long-term surveillance often includes regular check-ups to monitor for any suspicious changes [2].

A Typical Surveillance Timeline

While every child’s schedule is unique, a general roadmap for monitoring includes:

Age Focus of Monitoring Key Tests/Assessments
Infancy/Early Childhood Surgical healing and kidney protection Renal ultrasound, UTI monitoring [6]
School Age (4–11) Continence and social dryness Bladder capacity assessment, kidney function blood work [13]
Adolescence (12–18) Puberty, body image, and self-care Sexual health counseling, transition readiness assessments [14][15]
Adulthood (18+) Long-term function and cancer screening eGFR, annual urology exam, fertility discussions [3][11]

Psychosexual Health and Fertility

As children with CBE enter adolescence and adulthood, their needs shift toward psychosexual health and fertility.

  • Sexual Function: Many adults with CBE report successful sexual lives, though they may face challenges related to body image or genital appearance [16][17]. Modern surgical techniques aim to preserve sensation and function [14][18].
  • Fertility: While fertility rates in the CBE population are generally lower than in the general public, many men and women can and do have biological children [16][19]. Women with CBE require high-risk obstetric care during pregnancy to manage potential complications like pelvic organ prolapse [20][21].
  • Mental Health: Adolescents and adults with CBE have a higher likelihood of experiencing emotional or behavioral challenges [22]. Systematic mental health assessments and a supportive environment are key to fostering resilience and a positive body image [23][14].

The Transition to Adult Care

Successful transition means moving from a pediatric hospital to an adult urology specialist who understands congenital conditions [24]. This process should begin in the early teen years, focusing on empowering the young person to understand their own history and manage their daily care [15][25]. Your child’s medical history is a part of who they are, but it does not define what they can achieve.

Return to Validation & Orientation Overview

Common questions in this guide

How often are kidney ultrasounds needed for classic bladder exstrophy?
Children and adults with CBE need regular renal ultrasounds to check for swelling, scarring, or kidney stones. The exact frequency depends on age, surgical history, and individual kidney health, so your specialized urology team will determine a personalized schedule.
Does bladder exstrophy increase the risk of cancer?
Individuals with a history of classic bladder exstrophy, especially those with certain types of urinary diversions or bladder augmentations, have a slightly increased risk of developing bladder or urinary tract cancer. Regular urology check-ups are essential to monitor for any suspicious changes over time.
Can adults with classic bladder exstrophy have children?
Yes, many men and women with CBE can have biological children. While fertility rates are generally lower than the general public, successful pregnancies are possible. Women with CBE will require high-risk obstetric care to manage potential pelvic complications.
When should a patient transition to adult urology care?
The transition should begin in the early teenage years. This allows young people to gradually understand their own medical history, learn self-care, and seamlessly shift from a pediatric hospital to an adult urology specialist who understands congenital conditions.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How often will my child need a renal ultrasound and blood work to monitor their kidney health?
  2. 2.What specific symptoms (like changes in urine color or frequency) should we watch for that might indicate a stone or a UTI?
  3. 3.Does the type of reconstruction my child had (e.g., bladder augmentation or diversion) increase their long-term risk for bladder cancer?
  4. 4.At what age do you typically start discussing sexual health and fertility with your exstrophy patients?
  5. 5.Can you recommend a mental health professional who has experience with children or adults born with rare genital anomalies?

Questions For You

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References

References (25)
  1. 1

    Long-Term Management of Problems in Cloacal Exstrophy: A Single-Institution Review.

    Haney NM, Morrill CC, Haffar A, et al.

    Journal of pediatric surgery 2024; (59(1)):26-30 doi:10.1016/j.jpedsurg.2023.09.013.

    PMID: 37838618
  2. 2

    Adult patients treated for bladder exstrophy at a young age: What are their current demands?

    Bazinet A, Filfilan A, Mokhtari N, et al.

    Canadian Urological Association journal = Journal de l'Association des urologues du Canada 2024; doi:10.5489/cuaj.8601.

    PMID: 38466862
  3. 3

    Adult patients treated for bladder exstrophy at a young age What are their current demands?

    Bazinet A, Filfilan A, Mokhtari N, et al.

    Canadian Urological Association journal = Journal de l'Association des urologues du Canada 2024; (18(7)):E187-E193 doi:10.5489/cuaj.8601.

    PMID: 39074989
  4. 4

    Genetic Counseling for Bladder Exstrophy-Epispadias Complex.

    Reutter H, Holmdahl G

    European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie 2021; (31(6)):468-471 doi:10.1055/s-0041-1740336.

    PMID: 34911128
  5. 5

    A Borderline Ovarian Tumour in a Patient with Classic Bladder Exstrophy; a Case Report.

    Beauchamp K, Ryan G, Gibney B, et al.

    Irish medical journal 2018; (111(2)):695.

    PMID: 29952444
  6. 6

    The Genomic Architecture of Bladder Exstrophy Epispadias Complex.

    Beaman GM, Cervellione RM, Keene D, et al.

    Genes 2021; (12(8)) doi:10.3390/genes12081149.

    PMID: 34440323
  7. 7

    Biomarkers for Early Detection of Cisplatin-Induced Nephrotoxicity.

    Dimov N, Yaneva A, Valcheva E, et al.

    Life (Basel, Switzerland) 2025; (15(9)) doi:10.3390/life15091432.

    PMID: 41010375
  8. 8

    Preoperative and postoperative urinary NGAL levels in children with bladder exstrophy.

    Gupta A, Bajpai M, Anand S, Ali A

    Journal of nephrology 2023; (36(5)):1409-1414 doi:10.1007/s40620-022-01548-x.

    PMID: 36562911
  9. 9

    A Case of Giant Neobladder Stone of 5 Kg.

    Hiruma K, Tasaki M, Anraku T, et al.

    IJU case reports 2025; (8(3)):281-284 doi:10.1002/iju5.70026.

    PMID: 40336748
  10. 10

    Delayed ileal neobladder fistula caused by bladder stones: a case report.

    Lu D, Wu Y, Liao S, et al.

    BMC urology 2022; (22(1)):87 doi:10.1186/s12894-022-01040-5.

    PMID: 35715838
  11. 11

    Primary urothelial carcinoma of an ileal conduit; six decades after childhood bladder exstrophy surgery: a rare and late complication.

    Ahmed A, Nasir S, Jalbani IK, Qadri A

    World journal of surgical oncology 2025; (23(1)):211 doi:10.1186/s12957-025-03798-y.

    PMID: 40450330
  12. 12

    Transitional cell carcinoma in untreated adult bladder exstrophy: A rare case report.

    Handoko RR, Ismy J, Badiri I

    Urology case reports 2022; (42()):102004 doi:10.1016/j.eucr.2022.102004.

    PMID: 35106286
  13. 13

    Preoperative Bladder Capacity Predicts Social Continence following Bladder Neck Reconstruction in Children Born with Exstrophy-Epispadias Complex.

    Bar-Yosef Y, Savin Z, Ekstein M, et al.

    European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie 2023; (33(6)):510-514 doi:10.1055/a-2003-1823.

    PMID: 36549335
  14. 14

    Long-term psychosexual adjustment of adults born with classic bladder exstrophy.

    Paraboschi I, Sampogna G, Di Grazia M, et al.

    Journal of pediatric urology 2024; (20(4)):631-640 doi:10.1016/j.jpurol.2024.04.010.

    PMID: 38710600
  15. 15

    Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study.

    Tornivuori A, Kallio M, Culnane E, et al.

    Journal of advanced nursing 2024; (80(2)):756-764 doi:10.1111/jan.15860.

    PMID: 37691321
  16. 16

    Long-term sexual outcomes in classic bladder exstrophy: Insights from standardized scores.

    Abdellaoui S, Cazzorla F, Neuville P, et al.

    Journal of pediatric urology 2026; (22(3)):105713 doi:10.1016/j.jpurol.2025.105713.

    PMID: 41549041
  17. 17

    Using social media for patient-reported outcomes: A study of genital appearance and sexual function in adult bladder exstrophy patients.

    Rowe CK, Shnorhavorian M, Block P, et al.

    Journal of pediatric urology 2018; (14(4)):322.e1-322.e6 doi:10.1016/j.jpurol.2018.05.029.

    PMID: 30078549
  18. 18

    Modified penile reconstruction in classic bladder exstrophy: Can complete corporal covering of the urethral closure be achieved using incomplete disassembly technique?

    Nikolaev VV, Demin NV

    International braz j urol : official journal of the Brazilian Society of Urology 2024; (50(5)):585-594 doi:10.1590/S1677-5538.IBJU.2024.0194.

    PMID: 39059018
  19. 19

    Sexual Function, Social Integration and Paternity of Males with Classic Bladder Exstrophy following Urinary Diversion.

    Rubenwolf P, Thomas C, Thüroff JW, Stein R

    The Journal of urology 2016; (195(2)):465-70.

    PMID: 26475661
  20. 20

    Multidisciplinary Management of Pregnancy in Bladder Exstrophy: A Case Report.

    Batkoska M, Pečlin P

    The American journal of case reports 2025; (26()):e946782 doi:10.12659/AJCR.946782.

    PMID: 40159236
  21. 21

    Pelvic Organ Prolapse and Pregnancy in the Female Bladder Exstrophy Patient.

    Kaufman MR

    Current urology reports 2018; (19(3)):18 doi:10.1007/s11934-018-0767-2.

    PMID: 29479649
  22. 22

    Mental health, psychosocial functioning, and health-related quality of life of children and adolescents with bladder exstrophy, cloacal exstrophy, and epispadias: A scoping review.

    SooHoo M, Baker Z, Do C, et al.

    Journal of pediatric urology 2024; (20(6)):1044-1056 doi:10.1016/j.jpurol.2024.09.013.

    PMID: 39368869
  23. 23

    Psychiatric morbidity in bladder exstrophy-epispadias complex: A systematic review with a population-based case-control study.

    Kymäläinen E, Pakkasjärvi N, Pape B, et al.

    Journal of pediatric urology 2026; (22(3)):105795 doi:10.1016/j.jpurol.2026.105795.

    PMID: 41719822
  24. 24

    Health-related quality of life in Brazilian adults with bladder exstrophy-epispadias complex: a cross-sectional study on urinary continence, sexual function, and body image.

    Onofre LS, Onofre PSC, Ascar PCB, et al.

    Journal of pediatric urology 2026; (22(1)):105671 doi:10.1016/j.jpurol.2025.11.010.

    PMID: 41390281
  25. 25

    Transitioning adolescents to adult nephrology care: a systematic review of the experiences of adolescents, parents, and health professionals.

    Crawford K, Wilson C, Low JK, et al.

    Pediatric nephrology (Berlin, Germany) 2020; (35(4)):555-567 doi:10.1007/s00467-019-04223-9.

    PMID: 30843110

This page provides educational information on long-term monitoring for Classic Bladder Exstrophy (CBE). It does not replace professional medical advice. Always consult your specialized urology team for personalized surveillance and care plans.

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