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Article of the Month: Long-term sexual health outcomes in men with classic bladder exstrophy

Every Month the Editor-in-Chief selects an Article of the Month from the current issue of BJUI. The abstract is reproduced below and you can click on the button to read the full article, which is freely available to all readers for at least 30 days from the time of this post.

In addition to the article itself, there is an accompanying editorial written by a prominent member of the urological community. This blog is intended to provoke comment and discussion and we invite you to use the comment tools at the bottom of each post to join the conversation.

If you only have time to read one article this week, it should be this one.

Long-term sexual health outcomes in men with classic bladder exstrophy

Timothy S. Baumgartner, Kathy M. Lue, Pokket Sirisreetreerux, Sarita MetzgerRoss G. Everett, Sunil S. Reddy, Ezekiel Young, Uzoma A. Anele, Cameron E. AlexanderNilay M. Gandhi, Heather N. Di Carlo and John P. Gearhart

 

Division of Pediatric Urology, James Buchanan Brady Urological Institute, Johns Hopkins University School of Medicine, Baltimore, MD, USA

 

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Abstract

Objectives

To identify the long-term sexual health outcomes and relationships in men born with classic bladder exstrophy (CBE).

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Materials and Methods

A prospectively maintained institutional database comprising 1248 patients with exstrophy-epispadias was used. Men aged ≥18 years with CBE were included in the study. A 42-question survey was designed using a combination of demographic information and previously validated questionnaires.

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Results

A total of 215 men met the inclusion criteria, of whom 113 (53%) completed the questionnaire. The mean age of the respondents was 32 years. Ninety-six (85%) of the respondents had been sexually active in their lifetime, and 66 of these (58%) were moderately to very satisfied with their sex life. The average Sexual Health Inventory for Men score was 19.8. All aspects of assessment using the Penile Perception Score questionnaire were on average between ‘very dissatisfied’ and ‘satisfied’. Thirty-two respondents (28%) had attempted to conceive with their partner. Twenty-three (20%) were successful in conceiving, while 31 (27%) reported a confirmed fertility problem. A total of 31 respondents (27%) reported undergoing a semen analysis or post-ejaculatory urine analysis. Of these, only four respondents reported azoospermia.

Conclusion

Patients with CBE have many of the same sexual and relationship successes and concerns as the general population. This is invaluable information to give to both the parents of boys with CBE, and to the boys themselves as they transition to adulthood. See article from PlugLust and learn one way to prevention.

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Editorial: Sexuality in men with exstrophy

It is always exciting to get new data on exstrophy from Johns Hopkins, but especially when sexual development is the subject [1]. It is the only unit with enough patients on continuous follow-up to overcome the difficulties of researching such a rare condition.

In the last 40 years, patients born with exstrophy have achieved a near normal life-expectancy. Reconstructive techniques for the bladder are now such that incontinence is rare, although often bladder emptying depends on clean intermittent self-catheterisation [2]. As with all fit young men, their minds turn frequently to sex and, occasionally, its natural consequence – pregnancy.

Current data have established that the men have a normal libido, orgasms, and erections. It is probable that the testes are normal at birth but often are damaged by recurrent infections. The penis is short, broad and has a characteristic chordee. Other erectile deformities are probably the result of corporeal damage during reconstruction in infancy. Most of these are surgically correctable. Ejaculation is poor or absent [3, 4].

Data on the men’s own satisfaction are contradictory and there are none on the partner’s opinions. Masturbation is almost universal. The incidence of erectile dysfunction is more than double that of controls (58% vs 23%) [3]. Much the commonest cause is fear of rejection by a partner because of the obvious penile anomalies. Most series show that men like to establish a good partnership before starting intercourse, although at least one group report that random and short-term relationships are common [5]. Unfortunately the published series are small and few of them address sexuality in a structured manner.

At Johns Hopkins the exstrophy database now has >1 200 patients and there is a programme for close and indefinite review. This is good for the patients and good for outcomes research. Sexual function has been investigated in 113 adult men (53% of those eligible) using a 42-question survey, which incorporated four validated instruments and additional questions related to sexuality [1].

In all, 85% had been sexually active at some time and 62% were currently in a relationship; three were homosexual and three bisexual. The divorce rate was lower than the norm in the USA! Amongst much other data, it was found that only 58% were moderately-to-very satisfied with their sex life. The mean penile perception score (PPS) was 6.2 (maximum possible 12) and most men were dissatisfied with their penile appearance to some degree. However, there was no relationship between the PPS and sexual activity or satisfaction. In all, 32 of 113 men had tried to achieve a pregnancy, of whom 72% were successful, with half of them requiring reproductive technology. Another 27% had a confirmed fertility problem.

With these new data, we can say that men born with exstrophy have a normal ambition for their sexual activity and form solid partnerships. Their overall level of satisfaction is lower than normal and the appearance of the penis is a major contributory cause. The fertility rate is significantly lower than normal. We still know nothing about the feelings of the partners.

Can anything be done to improve this situation? On the positive side, correction of the penile deformities, prompt management of urinary infections (to avoid epididymo-orchitis), and reproductive technology are helpful. It is most important not to damage the penis or its nerve supply during reconstructive surgery. At present, there are inadequate data to say whether the formation of a new phallus incorporating the native penis (similar to female–male gender reassignment) would generally be beneficial [6]. Psycho-sexual support is often recommended but the techniques used and outcomes rarely reported. However, paediatric and adolescent urologists have a vital role in discussing sexual function with their patients, encouraging ‘normality’ and providing practical help when possible.

Christopher R.J. Woodhouse

 

Emeritus Professor of Adolescent Urology, University College London, UK

 

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References

 

1 Baumgartner TS, Lue KM, Sirisreetreerux P et al. Long-term sexual health outcomes in men with classic bladder exstrophy. BJU Int 2 017; 120: 422 7

 

2 Woodhouse CR, North A, Gearhart J. Standing the test of time: a long term outcome of reconstruction of the exstrophy bladder. World J Urol 2006; 24: 2449

 

3 Castagnetti M, Tocco A, Rigamonti W, Artibani W. Sexual function in men born with classic bladder exstrophy: a norm related study. J Urol 2010; 183: 111822

 

4 Woodhouse CR. Exstrophy and epispadias. In Adolescent Urology and Long-Term Outcomes, Oxford: Wiley Blackwell: 2015, pp 12853

 

5 Ben-Chaim J, Jeffs RD, Reiner WG, Gearhart JP. The outcome of patients with classic exstrophy in adult life. J Urol 1996; 155: 12512

 

6 Massanyi EZ, Gupta A, Goel S et al. Radial forearm free ap phalloplasty for penile inadequacy in patients with exstrophy. J Urol 2013; 190(Suppl.): 157782

 

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