Overview
Liver adenomatosis, also sometimes called hepatic adenomatosis or multiple hepatic adenomas, is a rare condition where many benign (non-cancerous) tumors called hepatic adenomas grow in the liver. Unlike having just one or two adenomas, adenomatosis is defined by having ten or more of these growths spread throughout the liver. These tumors are made up of liver cells that have started to multiply in an uncontrolled way, but they are not cancer in the traditional sense. However, they can cause serious problems because they may bleed, rupture, or in some cases transform into liver cancer over time. Many people with liver adenomatosis do not feel sick at first. When symptoms do appear, they often include pain or discomfort in the upper right part of the belly, a feeling of fullness, or fatigue. The condition is sometimes found by accident during an imaging scan done for another reason. Women who take hormonal birth control or hormone therapy may be at higher risk, and the condition can also be linked to certain metabolic conditions like fatty liver disease or diabetes. Treatment depends on how many tumors there are, how large they are, and whether they are causing symptoms. Options range from watchful waiting and stopping hormone medications, to procedures that block blood supply to the tumors, to surgery, or even liver transplantation in severe cases. Because of the risk of bleeding and cancer transformation, regular monitoring is very important.
Also known as:
Key symptoms:
Pain or aching in the upper right side of the bellyFeeling of fullness or pressure in the abdomenUnexplained tiredness or fatigueNauseaEnlarged liver that a doctor can feel during an examSudden severe abdominal pain if a tumor bleeds or rupturesLow blood pressure or dizziness if internal bleeding occursYellowing of the skin or eyes (jaundice) in rare casesUnintentional weight loss in some casesFeeling unwell without a clear cause
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Liver adenomatosis.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Liver adenomatosis at this time.
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Specialists
View all specialists →No specialists are currently listed for Liver adenomatosis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Liver adenomatosis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How many tumors do I have, how large are they, and are any of them in a dangerous location?,Which subtype of adenoma do I have, and does that affect my risk of bleeding or cancer?,Should I have genetic testing, and could this condition affect my family members?,Do I need to stop my hormonal birth control or other hormone medications, and what are my alternatives?,How often do I need imaging follow-up, and what signs should prompt me to seek emergency care?,Am I a candidate for surgery, embolization, or another procedure, and what are the risks and benefits?,Is liver transplantation something I should be thinking about, and how would I qualify?
Common questions about Liver adenomatosis
What is Liver adenomatosis?
Liver adenomatosis, also sometimes called hepatic adenomatosis or multiple hepatic adenomas, is a rare condition where many benign (non-cancerous) tumors called hepatic adenomas grow in the liver. Unlike having just one or two adenomas, adenomatosis is defined by having ten or more of these growths spread throughout the liver. These tumors are made up of liver cells that have started to multiply in an uncontrolled way, but they are not cancer in the traditional sense. However, they can cause serious problems because they may bleed, rupture, or in some cases transform into liver cancer over tim
At what age does Liver adenomatosis typically begin?
Typical onset of Liver adenomatosis is adult. Age of onset can vary across affected individuals.