18 Devonshire Street
London
W1G 7AQ
info@londonurologyspecialists.co.uk
Adolescent Urology
Bladder Exstrophy & Epispadias
A rare congenital condition affecting the bladder, urethra and pelvis — specialist adolescent and adult care to support continence, sexual function, fertility and long-term quality of life.
Clinically reviewed by
Mr Anthony Noah
Consultant Urological Surgeon · Reviewed August 2026 · Review due August 2027
What is the Bladder Exstrophy-Epispadias Complex?
The bladder exstrophy-epispadias complex (BEEC) is a rare congenital malformation in which the bladder, urethra and pelvis fail to close properly during foetal development. It exists on a spectrum, from isolated epispadias (where the urethra is open on the dorsum of the penis or splits the clitoris) at the milder end, to classic bladder exstrophy (where the bladder is exposed on the abdominal wall at birth), to the most severe form, cloacal exstrophy, which also involves the bowel.
The complex affects approximately 1 in 50,000 to 1 in 300,000 births. The vast majority of reconstructive surgery is performed in infancy and early childhood at national specialist paediatric centres. With modern techniques, most children grow up with a functional reconstructed urinary tract, but lifelong specialist follow-up is essential to support continence, kidney health, sexual function, fertility and overall wellbeing.
At London Urology Specialists, our adolescent urology service led by Mr Anthony Noah provides sensitive, knowledgeable specialist care for young adults with BEEC who are transitioning from paediatric services into adult life.
A lifelong condition
Childhood surgery is only the beginning. Continence, kidney function, sexual function and fertility all need to be supported and monitored across adolescence and adult life — and access to specialist adult exstrophy expertise is essential.
The Conditions in the Complex
The bladder exstrophy-epispadias complex sits on a spectrum. Three main entities are recognised, with shared underlying embryology but very different anatomical and functional consequences.
Epispadias
The urethral opening sits on the upper aspect of the penis in males, or splits the clitoris in females. The bladder is usually intact and inside the body, but continence may be affected because the sphincter mechanism is not fully formed.
Classic Bladder Exstrophy
The bladder is exposed on the abdominal wall at birth, with separated pubic bones and an associated epispadias. Staged reconstructive surgery in infancy and early childhood aims to close the bladder, reconstruct the urethra and restore continence.
Cloacal Exstrophy
The most severe end of the spectrum, involving the bowel as well as the urinary tract. Multiple reconstructive operations are needed, and adult survivors often have a urinary stoma, a bowel stoma, and complex ongoing care needs.
Adolescent and Adult Implications
Even after successful childhood reconstruction, patients with BEEC often need ongoing specialist care for a wide range of issues spanning physical health, sexual health and psychological wellbeing.
Urinary Continence
Continence is achieved in many but not all patients. Some need ongoing pads, medications or a continent stoma.
Recurrent UTIs
Recurrent urinary tract infections are relatively common, particularly in patients who self-catheterise or who have a reconstructed bladder using bowel.
Kidney Function Preservation
Protecting the upper tracts is a lifelong priority. Surveillance imaging and blood tests help detect any decline early.
Sexual Function
Genital appearance, erectile function, ejaculation, and sexual pleasure can all be affected. Sensitive discussion and assessment are vital.
Fertility Planning
Many adults with BEEC go on to have children. Reproductive potential varies from patient to patient. Fertility assessment, sperm analysis where relevant, and reproductive planning are all available.
Pregnancy Management (Women)
Pregnancy in women with BEEC is high-risk and requires coordinated care with a specialist obstetrician and specialist urologist. Delivery is usually by planned caesarean section.
Cosmetic and Psychological Aspects
Body image, scars and genital appearance can have a profound impact on confidence and intimate relationships. We offer time, privacy and signposting to expert support.
Mental Health and Identity
Growing up with a visible congenital condition is challenging. Psychological support and peer connections can make a real difference at key transition points.
Why Specialist Adolescent Care Matters
Exstrophy is so rare that most urologists will go their entire careers without ever meeting a patient who has it. That's why adult exstrophy care needs to sit with clinicians who see it regularly.
There are very few specialist adult exstrophy services in the UK. Most patients are cared for by one of the two national children's centres throughout childhood, where the expertise is concentrated, but that continuity can be hard to find when they move into adult care.
Sensitive, knowledgeable specialist care from a urologist familiar with BEEC can make a substantial difference to quality of life. It helps patients understand their anatomy, anticipate problems, get the right investigations, and find their way to the right surgical, medical, psychological and peer support.
Common Problems We Address
The problems faced by adolescents and adults with BEEC vary widely, but the following are common reasons for referral to our service.
Persistent or Recurrent Incontinence
Continence that has never been satisfactory or has deteriorated since childhood surgery. Specialist reassessment with urodynamics can guide medical or surgical options.
Voiding Difficulties
Difficulty emptying the reconstructed bladder, prolonged voiding, the need to strain, or incomplete emptying — all important to investigate to protect kidney function.
Stone Formation
Reconstructed bladders (especially those augmented with bowel) have a high lifetime risk of stones, which need active surveillance and surgical removal.
Recurrent UTIs
Recurrent infections, particularly in patients on intermittent self-catheterisation, are common and need a structured approach to reduce frequency and risk.
Erectile or Ejaculatory Dysfunction (Males)
Concerns about erections, ejaculation, sexual sensation or appearance — all common after exstrophy reconstruction and all worth assessing carefully.
Vaginal Stenosis or Dyspareunia (Females)
Narrow or tight introitus, pain on intercourse, or concerns about the appearance of the external genitalia. Conservative treatments and selected surgery can help.
Mitrofanoff Channel Problems
Difficulty catheterising the Mitrofanoff, stenosis at the stoma, leakage, or stones — common reasons for referral and often amenable to revision surgery.
Concerns About Pregnancy
Pre-pregnancy counselling and planning, including coordination with maternal-foetal medicine, to support a safe pregnancy and protect the reconstructed urinary tract.
Assessment & Investigations
A first specialist appointment is usually about understanding what was done in childhood, where things stand now, and what your priorities are. We tailor investigations to your individual needs and concerns. Typical assessments include:
Detailed History of Childhood Surgery
We review operative notes (where available), reconstructive techniques used, and the trajectory of continence, infection and kidney function through childhood.
Examination of Reconstructed Anatomy
A careful, sensitive examination of the abdomen, perineum and (where relevant) genitalia and any Mitrofanoff or urinary stoma. Always with privacy, chaperone and consent.
Renal Function and Electrolytes
Blood tests to assess kidney function, electrolytes, acid-base balance and vitamin levels — particularly important where bowel has been used to augment or replace the bladder.
Renal Tract Imaging
Ultrasound, CT or MRI as appropriate to assess kidney size and drainage, ureteric anatomy, and the reconstructed bladder — and to look for stones or hydronephrosis.
Urodynamic Studies
Pressure-flow studies are central to understanding bladder behaviour in BEEC: capacity, compliance, storage pressures and emptying. They guide medical and surgical decisions and protect the kidneys.
Cystoscopy or Mitrofanoscopy (If Needed)
A small flexible camera examination, performed in selected cases to assess the reconstructed bladder lining, look for stones, and inspect any Mitrofanoff or augmentation.
Fertility Assessment (Where Relevant)
For young adults considering parenthood: semen analysis in men, gynaecological review and ovarian reserve assessment in women, and onward referral to fertility specialists where helpful.
Treatments We Offer at LUS
Care plans are highly individualised. The following services are delivered directly by our specialist team at London Urology Specialists.
Long-Term Surveillance of the Reconstructed Urinary Tract
Structured annual review with appropriate imaging, blood tests and symptom review, so that any decline in bladder or kidney function is detected and addressed early.
Management of Recurrent UTIs and Stones
Structured antibiotic strategies, hygiene and catheterisation advice, and minimally invasive surgical removal of bladder or upper-tract stones where needed.
Bladder Management for Continence
Medications to relax or improve bladder storage, training in intermittent self-catheterisation (ISC), and intravesical Botox injections where overactivity is contributing to leakage.
Revision Continence Surgery (Selected Cases)
In carefully selected cases, revision surgery (such as bladder neck procedures, sling procedures, or artificial urinary sphincter) can improve continence after childhood reconstruction.
Urinary Diversion Management
Mitrofanoff revision (for stenosis, leakage or difficulty catheterising), urinary stoma care, and surveillance of bowel-based reservoirs.
Sexual Health and Fertility Advice
Confidential discussion and assessment of erectile, ejaculatory and sexual concerns; semen analysis where appropriate; and onward referral to fertility specialists if needed.
Pregnancy Planning and Coordination
Pre-pregnancy counselling and close coordination with obstetric teams, so that pregnancy and delivery can be planned safely with the reconstructed urinary tract in mind.
Coordination with Mental Health Services
Direct signposting and joint working with psychology, counselling and mental health services with experience of long-term congenital conditions.
Other Treatments
Some treatments needed by patients with BEEC are highly specialised and best delivered in tertiary national centres or by non-urologists. Where appropriate, we will arrange referral and remain involved in your ongoing local care.
Renal Replacement Therapy
Nephrology-LedIf kidney function deteriorates significantly, dialysis and renal transplantation are managed by nephrology and transplant teams. We continue to support the urological side of care in parallel.
Complex Reconstructive Surgery
Tertiary ReferralWhilst we accept referrals for major redo reconstruction (such as bladder augmentation, neobladder, or complex bladder neck reconstruction), some cases are best managed to UK national specialist centres. Depending on the age of the patient, this would usually be to Great Ormond Street Hospital for Children or University College London Hospitals.
Specialist Mental Health Support
Referred OnwardStructured psychological therapy, body-image work, and dedicated counselling for adults living with congenital conditions are accessed via psychology and mental health services with whom we work closely.
Multidisciplinary Care
Looking after a young adult with BEEC is rarely the job of a single clinician. We coordinate care across a team so that medical, surgical, sexual, reproductive and psychological needs are all addressed in a joined-up way.
Urology Nurse Specialists
Practical support with self-catheterisation, stoma care, continence products, and day-to-day questions between clinic appointments.
Obstetrics & Gynaecology
Review for female patients with concerns about external menstruation, dyspareunia, or pregnancy planning. Currently, gynaecology review requires referral into the NHS. Obstetric review for pregnancy planning can be provided in the private sector.
Psychology & Mental Health
Access to clinical psychology and counselling, particularly for body-image, identity and relationship concerns.
Fertility Services
Specialist fertility assessment and reproductive options where relevant, with referral to assisted conception services as appropriate.
Patient Support Organisations
Signposting to reputable patient support communities such as the Bladder Exstrophy Epispadias Community, so you can connect with others who really understand.
Meet your Specialists
Assessment and treatment of bladder exstrophy and epispadias is led by our experienced consultant urologists. Your care will be personally overseen by one of our senior specialists.
Key Takeaways
Bladder exstrophy and epispadias are lifelong conditions. Even when childhood reconstruction has gone well, ongoing specialist care for continence, kidney function, sexual function, fertility and mental health makes a real difference. Our adolescent urology service offers sensitive, knowledgeable support for young adults transitioning into adult care.
Frequently Asked Questions
Bladder exstrophy is a rare congenital malformation in which the bladder, urethra and pelvic bones fail to close properly during foetal development. In classic bladder exstrophy, the bladder is exposed on the abdominal wall at birth, with separated pubic bones and an associated epispadias. It affects approximately 1 in 50,000–300,000 births and sits on a spectrum with isolated epispadias at the milder end and cloacal exstrophy at the most severe end.
Yes. Even when childhood reconstruction has been very successful, the reconstructed urinary tract needs ongoing surveillance throughout adolescence and adult life. Issues such as continence, bladder capacity, stone formation, recurrent infection, kidney function, sexual function and fertility may evolve over time. Regular specialist review allows problems to be picked up early and managed before they cause lasting harm.
Many adults with bladder exstrophy go on to have children, although fertility and pregnancy planning should always be discussed with a specialist. Men may have ejaculatory or erectile concerns and may benefit from fertility assessment. Women can carry pregnancies, but pregnancy in an exstrophy patient is high-risk: it must be carefully co-managed with an obstetrician who is familiar with the condition and specialist urologist, and delivery is usually planned by caesarean section to protect the reconstructed urinary tract.
Not necessarily. Many people achieve good urinary continence after childhood reconstruction, but a proportion continue to have leakage from the urethra or a Mitrofanoff channel. If continence has deteriorated or has never been satisfactory, specialist reassessment with urodynamics, imaging and (in selected cases) revision continence surgery can often make a meaningful difference.
Patient support organisations such as the Association for the Bladder Exstrophy Community can be a valuable source of peer support, lived experience and practical advice. Unfortunately there are no dedicated standalone support charities based in the UK at the time of writing (2026).
Specialist Adult Exstrophy Care
If you have bladder exstrophy or epispadias and are looking for sensitive, knowledgeable specialist care as you transition into adult life, our adolescent urology team is here to help.