Living with Double uterus-hemivagina-renal agenesis syndrome
A rare condition present from birth with a double uterus, a blocked half of the vagina, and a missing kidney on the same side, often found at puberty.
Understanding Double uterus-hemivagina-renal agenesis syndrome
People with this condition have a double uterus and a blockage in one side of the vagina or cervix. They also have a kidney difference on the same side, such as a missing kidney. It is usually found at puberty after periods begin, due to severe period pain, ongoing pelvic pain, discharge, or bleeding between periods. Fever and a mass in the belly or pelvis may also occur.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Painful periods (dysmenorrhea)
- Long-lasting pelvic pain
- Bleeding between periods
- Missing kidney on one side (renal agenesis)
- Fever
- Pain with sex (dyspareunia)
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, maternal-fetal medicine 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); Maternal-fetal medicine specialists (pregnancy-related); 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 a person's genes cause this condition. It doesn't list a specific gene.
Also known as: double uterus and obstructed hemivagina syndrome; herlyn-werner syndrome; obstructed hemivagina and ipsilateral renal anomaly; ohvira syndrome; uterus bicornis bicollis with partial vaginal septum and unilateral hematocolpos with ipsilateral renal agenesis; wunderlich syndrome
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 Double uterus-hemivagina-renal agenesis syndrome.
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