ADPKD is an inherited condition that causes fluid-filled sacs called cysts to grow in the kidneys. These cysts gradually enlarge over the years, reducing kidney function. They can be as small as a pea to as large as a grapefruit.

ADPKD can also cause cysts in the liver.

Sometimes, individual cysts in your kidney may get infected, cause pain or bleed, especially if they’re large. Similar problems can occur with liver cysts.

Often, these problems can be treated with medicines (for example, painkillers or antibiotics). If these treatments aren’t working, you may need a procedure or surgery to treat a problem cyst.

Very large cysts (over 5 cm diameter) can also cause problems such as bloating, heartburn (acid reflux) and feeling full early on in a meal. Procedures or surgery might help here too.

Procedures sometimes used to treat one or more problem cysts include:

• Percutaneous cyst aspiration, in which an interventional radiologist (a doctor who specializes in procedures using scans to guide them) uses a long needle to remove the fluid from a cyst.
• Sclerotherapy, in which an interventional radiologist drains a cyst and then injects a solution to kill the cyst cells.
• Cyst deroofing (fenestration), in which a surgeon removes part of the cyst wall.
• Transcatheter arterial embolization, in which an interventional radiologist blocks a blood vessel to an area of the kidney.

We outline each of these procedures below. There hasn’t been much research into their use in people with ADPKD. Therefore, we’re unable to say with certainty how many people with ADPKD have had these procedures, how well they work, and what proportion of people get complications. Please ask your treatment team for the latest information.

The best procedure for you will depend on many factors including:

• the problems your kidney or liver cysts are causing
• which treatments you’ve had before and any treatments planned for the future
• which procedures the specialists in your area have most expertise in
• which procedure has the best balance of benefits and risks for you

Ask your interventional radiologist or surgeon to explain the risks and benefits, any unknowns and any alternatives. This will help you decide whether to proceed.

If you’re worried about having the procedure, let them know. You may also find it helpful to chat to other people who have had the procedure. You can connect with people with ADPKD through our support groups and ADPKD Facebook group. Remember that each person’s experience is different.

In percutaneous cyst aspiration, an interventional radiologist drains fluid out of a large cyst using a long needle.

Here are the main steps:

• The radiologist will numb the area with a local anaesthetic.
• Using ultrasound or a CT (computed tomography) scan to guide them, they’ll put a long needle through your skin into the cyst.
• They’ll draw the fluid out of the cyst through the needle.

There is a chance of bleeding or getting an infection from the procedure.

Unfortunately, cysts often refill with fluid. If percutaneous cyst aspiration relieves your symptoms for a while, you might need one of the procedures below for a longer-term solution.

Further treatment of a cyst after it has been drained can often stop it refilling. An interventional radiologist can do this by injecting ethanol or another solution into the cyst, which is called sclerotherapy. Sclerotherapy kills the cyst cells and makes scar tissue.

You’ll be offered sedation for this procedure and will have a local anaesthetic too. Sedation involves having medicines that make you feel drowsy and relaxed. Most of the effects of sedation wear off within an hour or two, but you’ll need 24 hours to fully recover.

The main steps of sclerotherapy are:

• Your interventional radiologist will drain the cyst (see Percutaneous cyst aspiration above).
• They’ll inject ethanol or another solution into the cyst.
• You’ll lie in a variety of positions over about 20 minutes. This helps to ensure the ethanol touches all sides of the cyst.
• Your radiologist will drain the solution back out of the cyst.

Sclerotherapy often causes pain, for which you’ll be given pain killers. There’s also a chance of bleeding and getting an infection. There’s a small risk of damaging nearby organs.

You’ll have a follow-up scan within a few months to check the cyst has healed.

If you have a problem cyst, an alternative to sclerotherapy is to remove some of the cyst wall so the fluid can drain out. This is called deroofing or fenestration.

A surgeon may ask that you have percutaneous cyst aspiration first, to check that the cyst is the cause of your symptoms.

A surgeon can do deroofing surgery via keyhole surgery (laparoscopy) or open surgery. Ask your surgeon to explain which approach is best for you, including the benefits, risks and recovery times.

Before the surgery, you’ll have a checkup to make sure you’re healthy enough for the surgery. This is called a ‘pre-op’.

You’ll have the surgery under general anaesthetic.

You’ll probably need to stay in hospital for 2–3 days afterwards, and it’s common to have some pain and bloating. It will take you a few weeks to recover fully.

There’s a chance of having bleeding, an infection, or a hernia (where part of your bowel bulges through the abdominal muscle) from the surgery. More serious problems — such as a blood clot or injury to nearby organs or blood vessels — are rare.

Scar tissue forming after surgery (called adhesions) might make future surgeries harder to do. This is one of the factors for you and your surgeon to consider together.

You’ll have a follow-up appointment within a few weeks or months of your surgery to check the area has healed well.

If you have a kidney or liver cyst that keeps bleeding, transcatheter arterial embolization might be a treatment option for you. This procedure stops the blood supply to an area of the kidney or liver and so can help to stop bleeding.

Transcatheter arterial embolization is usually only used to treat kidney cysts in people who are on dialysis or who have had a kidney transplant (and still have their own kidneys).

For this procedure, you’ll have a local anaesthetic and intravenous painkillers. You’ll be offered sedation too.

The main steps are:

• An interventional radiologist will make a small cut in your thigh and put a very thin flexible tube (catheter) into your leg artery.
• They’ll feed the catheter through your blood vessels to the artery within the kidney or liver that supplies the problem area.
• They’ll use scans (such as a CT scan with a dye in your bloodstream) during the procedure to see where to guide the catheter.
• They’ll use a metal coil or another substance to block the artery.

After the procedure you’re likely to have pain (for which you’ll be given pain killers) and fever. There’s a chance of getting an infection too.

If the procedures above don’t work or aren’t suitable for you and you’re having severe problems from a cyst, your treatment team might suggest a kidney transplant. You might have one or both of your kidneys removed before, during or after transplant surgery. This is called nephrectomy.

You can find information about kidney transplants and nephrectomy on our website.

If you’re having ongoing problems with liver cysts, your treatment team might recommend you have part of your liver removed or have a liver transplant. Most people with ADPKD never need these surgeries. See our web page on polycystic liver disease (PLD) for more information.

• How do cysts form?
• Pain
• Blood in your wee
• Polycystic liver disease
• Kidney Removal (nephrectomy)
• Kidney transplants
• Support from the PKD Charity

• Cambridge University Hospitals NHS Foundation Trust has information on laparoscopic deroofing of a simple renal cyst. 
• The NHS has information on CT scans.
• The Royal College of Anaesthetists has information on sedation and anaesthesia.