Learning About Polycystic Liver Disease

Polycystic liver disease is a condition in which fluid-filled sacs (cysts) form in the liver. These cysts are not cancerous. In many cases, the liver works normally, helping the body process nutrients and filter waste.

This condition often runs in families. There are two main forms of it. One affects only the liver. The other occurs along with a condition called polycystic kidney disease (PKD). This condition causes cysts to grow in the kidneys.

Changes in certain genes cause polycystic liver disease. These gene changes, called mutations, are usually passed down from a parent.

Women tend to develop more cysts and larger cysts than men do. Estrogen may cause cysts to grow faster. Talk to your doctor if you have questions about your risk.

You can live a full, active life with polycystic liver disease. Regular checkups with your doctor can help track changes and address concerns over time.

You may want to talk to your doctor about hormone therapy (including certain types of birth control) before starting it. Estrogen may cause cysts to grow larger. Also talk to your doctor if you are thinking about planning a pregnancy because pregnancy can affect cyst growth.

Serious problems are not common. Ongoing care with your doctor is one way to help manage this condition over time.

Many people with polycystic liver disease have no symptoms and may not know they have it. Symptoms tend to appear when cysts grow large enough to press on nearby organs.

Symptoms may include:

• Pain or pressure in the upper belly.
• Feeling full quickly when eating.
• A swollen or bloated belly.
• Shortness of breath.
• Feeling tired.
• Back pain or discomfort.
• Acid reflux (a burning feeling in the chest or throat).

A doctor often finds liver cysts by chance during an imaging test done for another reason. Imaging tests that are used to look at the liver include:

• Ultrasound. It uses sound waves.
• CT scan. This is a detailed type of X-ray.
• MRI. This imaging test uses magnets.

A doctor will also ask about your family history, since this condition often runs in families.

Most people with polycystic liver disease don't need treatment. When cysts cause discomfort, the main goal is to ease symptoms.

For mild symptoms, watchful waiting may be the best choice. This means regular checkups with your doctor to track any changes over time. Some medicines may help slow cyst growth. These include a class of drugs called somatostatin analogs, such as lanreotide or octreotide. They work by reducing certain hormones that may encourage cysts to grow.

If a cyst causes pain or pressure, a doctor may drain the fluid from it. In more serious cases, surgery to remove part of the liver may be an option. A liver transplant is rarely needed, but it may be considered in severe cases.