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Polycystic Liver Disease

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People with ADPKD can develop cysts in organs other than the kidney, most commonly the liver.

The number of liver cysts increases with age and with the severity of kidney cysts. Liver cysts are very rare in children and teenagers with ADPKD. But by the age of 30, one in twenty people with ADPKD have liver cysts, rising to nearly three quarters of people in their 60s.

Polycystic liver disease is more common in women than in men with ADPKD. In women, cysts not only occur at a younger age, but are larger and more numerous. This is thought to be because the female hormone oestrogen is involved in the development and growth of the cysts.

Typically, liver cysts rarely cause symptoms or liver problems for people with ADPKD. However, the cysts may sometimes cause pain if they press against other organs or if they become infected. A few people will need surgery to treat an infected cyst or reduce the size of the liver. Very rarely, a liver transplant may be needed.

Causes of liver cysts

Liver cysts seem to be caused by the same genetic changes that lead to cysts in the kidney. In the liver, the cysts develop in the bile ducts or liver tubules rather than in liver cells. This means that liver cysts do not replace functioning cells and do not cause liver failure, even when they make the liver very large.

Oestrogen, the female hormone, appears to be a factor in causing the development and growth of liver cysts. Women who have been pregnant are more likely than women who have never been pregnant to have liver cysts, as are women who have used oestrogen-containing contraception or hormone replacement therapy at the menopause.

Symptoms of liver cysts

Most people with polycystic liver disease have no symptoms, and the cysts are only found during an ultrasound scan.

Symptoms develop as the cysts grow larger and more numerous, and may include:

  • Bloating and increase in size of the abdomen
  • Early fullness on eating
  • Heartburn or vomiting
  • Change in bowel habit or haemorrhoids (piles)
  • Pain.

Rarely, the cysts may cause complications:

  • Cysts may bleed or burst.
  • Cysts may become infected, causing pain and fever.
  • When the cysts cause the liver to grow very large, people may experience hernias, prolapse of the womb, rib fractures, obstruction of the bile duct and obstruction of one of the veins in the abdomen.

Diagnosing liver cysts

Your doctor will check your own and your relatives’ medical history, and physically examine you. Your liver and kidney function will also be checked, and tests such as ultrasound, CT or MRI can be used to check the size and position of the cysts in the liver.

Treating liver cysts

Liver cysts do not need treatment unless they are causing symptoms. Options include:

  • Antibiotics for infected cysts
  • Draining for single large cysts, either by a tube passed through from outside the body, or an operation under general anaesthetic.
  • Surgery to open up the cyst and remove the fluid (called cyst fenestration)
  • Surgery to remove the part of the liver most affected by the cysts
  • Rarely, a liver transplant, which may be done at the same time as a kidney transplant.

Surgery on the liver can be risky, so it is recommended only if its benefits are likely to be greater than its risks.

Preventing liver cysts

It is currently not possible to stop cysts from forming in the liver. However, the following may help to slow their growth:

  • Avoid caffeine (e.g. in coffee, tea and colas)
  • Follow a low salt (sodium) diet
  • Women should be cautious about using oestrogen-containing contraception (e.g. the ‘Pill’) and hormone replacement therapy. Ask to be referred to a specialist so that you can discuss the best option for you.

More information

The information on this page is under review by the PKD Charity using the accredited Information Standard process.

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Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

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