Living with Congenital primary megaureter
A condition in which the tube from the kidney to the bladder (ureter) is wider than usual, though the bladder is normal.
Understanding Congenital primary megaureter
The cause is not known. The widened ureter may be blocked, may let urine flow backward (reflux), or may be neither. It can show up at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Frequent urinary tract infections
- Swollen kidney (hydronephrosis)
- Urine flowing backward (vesicoureteral reflux)
- Fever
- Abdominal pain
- Kidney stones
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.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 National Kidney Foundation 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 changes in genes cause this condition, though it also calls the condition idiopathic, meaning the exact cause is unknown. It doesn't name a gene.
Also known as: congenital primary megalo-ureter
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital primary megaureter.
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