Living with Exstrophy-epispadias complex
A group of birth differences of the lower belly wall, bladder, and genitals.
Understanding Exstrophy-epispadias complex
It causes a visible difference in the lower belly wall, and the abdominal muscles do not form normally. Depending on severity, it can affect the urinary system, bones, pelvis, belly wall, genitals, and sometimes the spine and anus. It is seen during pregnancy or at birth. GARD says there is no known cause.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Difference in the lower belly wall
- Bladder exstrophy (bladder open on the outside of the belly)
- Epispadias
- Urine flowing back toward the kidneys (vesicoureteral reflux)
- Bladder bulging out (cystocele)
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 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
- 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
GARD says there is no known cause for this condition.
Also known as: beec; eec; oeis complex; oeis syndrome; omphalocele-exstrophy-imperforate anus-spinal defects
Patient organizations
- Association for the Bladder Exstrophy CommunityExstrophy-epispadias complex · 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 Exstrophy-epispadias complex.
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