Symptoms of autosomal dominant polycystic kidney disease 

The symptoms of autosomal dominant polycystic kidney disease (ADPKD) are caused by the growth of fluid-filled sacs (cysts) in the kidneys.

Although the condition is present from birth, ADPKD may not cause any obvious problems until the cysts have reached a size where they significantly affect how well your kidneys work. In most cases, this doesn't happen until 30-60 years of age.

The growth of these cysts can eventually cause your kidneys to increase in size. In some cases, the kidneys of older adults with ADPKD can be three or four times larger than those of adults who don't have the condition.

What problems can ADPKD cause?

The growth of cysts in your kidneys can cause a wide range of problems, including:

These problems are described in more detail below.

Pain

Pain in the abdomen, side or lower back is often the first noticeable symptom of ADPKD. This can be severe, but is usually short-lived  lasting from a few minutes to several days.

Common causes of pain associated with ADPKD include:

  • a cyst becoming larger
  • bleeding into one or more cysts
  • a kidney stone getting stuck in your kidney  
  • a kidney or other part of your urinary system, such as your bladder, becoming infected – these are known as UTIs

Blood in your urine

Blood in your urine can be another common initial symptom of ADPKD. Although this can often be a frightening symptom, it is not usually a serious concern because most cases will resolve within a week without the need for treatment.

However, it is still important to see your GP if you notice blood in your urine so another cause, such as a growth in the bladder, can be looked for and excluded.

High blood pressure

High blood pressure is considered by many experts to be the first effect of ADPKD, and it can affect some children with the condition.

However, high blood pressure does not usually cause any obvious symptoms and is only usually detected during routine testing. 

Symptoms only occur when it reaches a very high level, which is rare. In such circumstances, symptoms can include:

If there are any symptoms to suggest that it may be uncontrolled, you should see your GP urgently.

Kidney stones

Having ADPKD puts you at increased risk of developing kidney stones. 

Smaller kidney stones may pass out of your kidneys without causing any symptoms, but larger stones can get blocked in your kidney or ureter (the tube that connects your kidney to your bladder) and cause problems such as:

  • intense pain in the back or side of your abdomen, or occasionally in your groin – the pain may last for minutes or hours, with pain-free intervals in between
  • feeling restless and unable to lie still
  • feeling sick
  • needing to urinate more often than normal
  • blood in your urine

You should contact your GP if you think you have a kidney stone, so they can try to find out what is causing your symptoms.

Urinary tract infections (UTIs)

UTIs are broadly classified into one of two groups  lower UTIs and upper UTIs.

A lower UTI is an infection that develops in your bladder or urethra (the tube that carries urine out of the body). An upper UTI is an infection that develops in your kidneys or your ureters (the tubes that link your kidneys to your bladder).

ADPKD does not increase your risk of developing lower UTIs such as bladder infections (cystitis), but can mean that any lower UTIs you do develop could spread to the kidneys and become potentially serious upper UTIs.

The symptoms of a lower UTI can include:

  • cloudy urine
  • a need to urinate more frequently, either during the day or night, or both
  • pain or discomfort when passing urine
  • an urgent need to urinate (holding in your urine becomes more difficult)
  • unpleasant smelling urine

The symptoms of an upper UTI can include:

  • a high temperature (fever) of 38C (100.4F) or above
  • uncontrollable shivering
  • feeling sick
  • vomiting
  • diarrhoea 

You should visit your GP if you have ADPKD and you think you may have a UTI, because it may need treatment to stop the infection spreading into the cysts in your kidneys.

Chronic kidney disease (CKD)

Most people with ADPKD will eventually lose a significant amount of kidney function. Loss of kidney function caused by kidney damage is known as chronic kidney disease (CKD).

CKD does not usually cause symptoms until it has reached an advanced stage, known as CKD stage 4 (when 75% of kidney function has been lost).

The most advanced stage of CKD (stage 5) is called kidney failure or end-stage renal disease. This is when dialysis is essential to keep the person alive. Symptoms of kidney failure include:

Kidney failure rarely happens suddenly, and treatment options should have been discussed and a treatment plan chosen before this stage has been reached.

Page last reviewed: 09/06/2014

Next review due: 09/06/2016