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Long-term sexual outcomes in patients with exstrophy-epispadias complex

International Journal of Impotence Research volume 33, pages 164–169 (2021)Cite this article

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Abstract

Exstrophy-epispadias complex (EEC) is a spectrum of genitourinary malformations that ranges in severity and affects external genitalia and the lower urinary tract. The aim of this study was to determine the long-term sexual outcomes of patients with EEC. Sexual outcomes were hypothesized to be related to those of urinary ones. A retrospective database including all patients with EEC who had surgery at a tertiary referral institution from 1990 to 2019 was created. Data based on patient’s charts were collected: demographics, surgeries, sexual outcomes, urinary outcomes. Fifty-eight patients with EEC had surgery at tertiary referral institution and entered our database. For this analysis of sexual outcomes, a sub-set of the whole population was selected: patients being 14 years old and older, having at least one surgery at our institution and having at least 12 months of follow-up. Applying this selection criteria to our database resulted in a series of 29 patients. High rates of sexual activity were observed in pubertal and post-pubertal men (96%) and women (75%). Seventy-nine percent of men and 67% of women reported sexual satisfaction; 63% of men reported normal ejaculation. To achieve these rates, 96% of men required surgery (84% penoplasty, 52% phalloplasty), and 25% of women required introitoplasty. Fertility was achieved in 67% of men and 100% of women. Assisted reproductive technology was needed in one man. Continence rates were high (diurnal continence in 83% and nocturnal continence in 93%). However, 76% required multiple continence procedures. Men and women with EEC can have good long-term sexual and urinary outcomes, but this may require multiple surgeries. Good sexual outcomes seem to be related to good urinary and continence outcome.

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References

  1. Jayachandran D, Bythell M, Platt MW, Rankin J. Register based study of bladder exstrophy-epispadias complex: prevalence, associated anomalies, prenatal diagnosis and survival. J Urol. 2011;186:2056–60.

    Article  CAS  Google Scholar 

  2. Wood D, Baird A, Carmignani L, De Win G, Hoebeke P, Holmdahl G, et al. Lifelong congenital urology: the challenges for patients and surgeons. Eur Urol. 2019;75:1001–7.

    Article  Google Scholar 

  3. Woodhouse CR, Neild GH, Yu RN, Bauer S. Adult care of children from pediatric urology. J Urol. 2012;187:1164–71.

    Article  Google Scholar 

  4. Bower WF, Christie D, DeGennaro M, Latthe P, Raes A, Romao RL, et al. The transition of young adults with lifelong urological needs from pediatric to adult services: an international children’s continence society position statement. Neurourol Urodyn. 2017;36:811–9.

    Article  Google Scholar 

  5. Zhu X, Klijn AJ, de Kort LMO. Urological, sexual and quality of life evaluation of adult patients with exstrophy-epispadias-complex: long-term results from a Dutch cohort. Urology. 2020;136:272–7. https://doi.org/10.1016/j.urology.2019.10.011.

    Article  Google Scholar 

  6. Mendelson D. The European Union General Data Protection Regulation (EU 2016/679) and the Australian My Health Record Scheme – a comparative study of consent to data processing provisions. J Law Med. 2018;26:23–38.

    PubMed  Google Scholar 

  7. Ganesh A, Gupta NJ, Chakravarty B. Surgical correction of rare Mullerian anomalies and spontaneous pregnancies: a case report. Fertil Steril. 2008;89:723. e13–6.

    Article  Google Scholar 

  8. Lemack GE, Zimmern PE. Predictability of urodynamic findings based on the Urogenital Distress Inventory-6 questionnaire. Urology. 1999;54:461–6.

    Article  CAS  Google Scholar 

  9. Castagnetti M, Tocco A, Capizzi A, Rigamonti W, Artibani W. Sexual function in men born with classic bladder exstrophy: a norm related study. J Urol. 2010;183:1118–22.

    Article  Google Scholar 

  10. Ebert A, Scheuering S, Schott G, Roesch WH. Psychosocial and psychosexual development in childhood and adolescence within the exstrophy-epispadias complex. J Urol. 2005;174:1094–8.

    Article  CAS  Google Scholar 

  11. Reynaud N, Courtois F, Mouriquand P, Morel-Journel N, Charvier K, Gerard M, et al. Male sexuality, fertility, and urinary continence in bladder exstrophy-epispadias complex. J Sex Med. 2018;15:314–23.

    Article  Google Scholar 

  12. Baumgartner TS, Lue KM, Sirisreetreerux P, Metzger S, Everett RG, Reddy SS, et al. Long-term sexual health outcomes in men with classic bladder exstrophy. BJU Int. 2017;120:422–7.

    Article  Google Scholar 

  13. Garaffa G, Spilotros M, Christopher NA, Ralph DJ. Total phallic reconstruction using radial artery based forearm free flap phalloplasty in patients with epispadias-exstrophy complex. J Urol. 2014;192:814–20.

    Article  Google Scholar 

  14. Woodhouse CR. Prospects for fertility in patients born with genitourinary anomalies. J Urol. 2001;165:2354–60.

    Article  CAS  Google Scholar 

  15. Park W, Zwink N, Rosch WH, Schmiedeke E, Stein R, Schmidt D, et al. Sexual function in adult patients with classic bladder exstrophy: a multicenter study. J Pediatr Urol. 2015;11:125. e1–6.

    Article  Google Scholar 

  16. Ben-Chaim J, Jeffs RD, Reiner WG, Gearhart JP. The outcome of patients with classic bladder exstrophy in adult life. J Urol. 1996;155:1251–2.

    Article  CAS  Google Scholar 

  17. Gobet R, Weber D, Renzulli P, Kellenberger C. Long-term follow up (37–69 years) of patients with bladder exstrophy treated with ureterosigmoidostomy: uro-nephrological outcome. J Pediatr Urol. 2009;5:190–6.

    Article  Google Scholar 

  18. Mesrobian HG, Kelalis PP, Kramer SA. Long-term followup of cosmetic appearance and genital function in boys with exstrophy: review of 53 patients. J Urol. 1986;136:256–8.

    Article  CAS  Google Scholar 

  19. Rubenwolf P, Thomas C, Thuroff JW, Stein R. Sexual function and fertility of women with classic bladder exstrophy and continent urinary diversion. J Urol. 2016;196:140–5.

    Article  Google Scholar 

  20. Salem HK, Eisa M. Long-term follow-up (18−35 years) of male patients with history of bladder exstrophy (BE) repair in childhood: erectile function and fertility potential outcome. J Sex Med. 2012;9:1466–72.

    Article  Google Scholar 

  21. Ansari MS, Cervellione RM, Gearhart JP. Sexual function and fertility issues in cases of exstrophy epispadias complex. Indian J Urol. 2010;26:595–7.

    Article  CAS  Google Scholar 

  22. Deans R, Banks F, Liao LM, Wood D, Woodhouse C, Creighton SM. Reproductive outcomes in women with classic bladder exstrophy: an observational cross-sectional study. Am J Obstet Gynecol. 2012;206:496. e1–6.

    Article  Google Scholar 

  23. Dy GW, Willihnganz-Lawson KH, Shnorhavorian M, Delaney SS, Amies Oelschlager AM, Merguerian PA, et al. Successful pregnancy in patients with exstrophy-epispadias complex: a University of Washington experience. J Pediatr Urol. 2015;11:21. e1–6.

    Article  Google Scholar 

  24. Maruf M, Manyevitch R, Michaud J, Jayman J, Kasprenski M, Zaman MH, et al. Urinary continence outcomes in classic bladder exstrophy: a long-term perspective. J Urol. 2019. https://doi.org/10.1097/JU.0000000000000505.

  25. Frimberger D, Gearhart JP, Mathews R. Female exstrophy: failure of initial reconstruction and its implications for continence. J Urol. 2003;170:2428–31.

    Article  Google Scholar 

  26. Neijenhuijs KI, Holtmaat K, Aaronson NK, Holzner B, Terwee CB, Cuijpers P, et al. The international index of erectile function (IIEF)—a systematic review of measurement properties. J Sex Med. 2019;16:1078–91.

    Article  Google Scholar 

  27. Neijenhuijs KI, Hooghiemstra N, Holtmaat K, Aaronson NK, Groenvold M, Holzner B, et al. The female sexual function index (FSFI) – a systematic review of measurement properties. J Sex Med. 2019;16:640–60.

    Article  Google Scholar 

  28. Lim R, Liong ML, Lim KK, Leong WS, Yuen KH. The minimum clinically important difference of the international consultation on incontinence questionnaires (ICIQ-UI SF and ICIQ-LUTSqol). Urology. 2019;133:91–5.

    Article  Google Scholar 

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Acknowledgements

The Ghent University Hospital’s Department of Urology is accredited by the European Reference Network (ERN) in the eUrogen sub-section (urologic rare diseases), specifically for the EEC complex, making the Department a European referral center.

Funding

This reasearch was funded by Research Fund for Pediatric Urology ‘Gianni Eggermont fonds ter bevordering van de kinderurologie’.

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Authors and Affiliations

  1. Department of Urology, ERN eUROGEN accredited centre, Ghent University Hospital, Ghent, Belgium

    Céline Sinatti, Mieke Waterschoot, Joshua Roth, Erik Van Laecke, Piet Hoebeke & Anne-Françoise Spinoit

  2. Division of Pediatric Urology, Riley Hospital for Children, Indiana University School of Medicine, 705 Riley Hospital Drive, Suite 4230, Indianapolis, IN, 46202, USA

    Joshua Roth

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  1. Céline Sinatti
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Correspondence to Anne-Françoise Spinoit.

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Sinatti, C., Waterschoot, M., Roth, J. et al. Long-term sexual outcomes in patients with exstrophy-epispadias complex. Int J Impot Res 33, 164–169 (2021). https://doi.org/10.1038/s41443-020-0248-2

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