Living with Bladder exstrophy
A condition present from birth in which the bladder is open on the outside of the lower belly.
Understanding Bladder exstrophy
It includes an open bladder plate, epispadias (an opening of the urethra in an unusual place), and a gap in the pelvis, pelvic floor, and belly wall. It is seen in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Open bladder plate (bladder exstrophy)
- Urethra opening in an unusual place (epispadias)
- Repeated urinary tract infections
- Urine flowing back toward the kidneys (reflux)
- Hernias near the groin or belly button
- Differences in the anus or genitals
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists, kidney specialists and urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Association for the Bladder Exstrophy Community and Fetal Health Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Association for the Bladder Exstrophy Community, Fetal Health Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Association for the Bladder Exstrophy Community and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause this condition. GARD doesn't name a specific gene yet.
Also known as: bladder exstrophy (disease); bladder exstrophy-epispadias-cloacal exstrophy complex; classic exstrophy of the bladder; congenital ectopic bladder; congenital extroversion of urinary bladder; ectopia vesicae
Patient organizations
- Association for the Bladder Exstrophy CommunityBladder exstrophy · United States
- Fetal Health FoundationBladder exstrophy · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Bladder exstrophy.
Explore research for Bladder exstrophy
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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