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Symptoms

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

Although ADPKD is present from birth, it 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 does not happen until 30 to 60 years of age.

The growth of the cysts can eventually cause your kidneys to increase in size.

In some cases, the kidneys of older adults with ADPKD can be 3 or 4 times larger than those of adults who do not have the condition.

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

  • pain in your tummy (abdomen), side or lower back
  • blood in your urine (haematuria)
  • high blood pressure (hypertension)
  • kidney stones
  • recurrent urinary tract infections (UTIs)
  • eventually, loss of kidney function (chronic kidney disease, or CKD)

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 1 or more cysts
  • a kidney stone  
  • a kidney or another part of your urinary system, such as your bladder, becoming infected (a UTI)

Blood in your urine

Blood in your urine (haematuria) is another common initial symptom of ADPKD.

Although it can often be a frightening symptom, it's not usually a cause for concern and most cases will resolve within a week without the need for treatment.

But you should see a GP if you notice blood in your urine so that other possible causes, such as a growth in your bladder, can be investigated and excluded.

High blood pressure

Many experts consider high blood pressure to be the first effect of ADPKD, but as it often does not cause any obvious symptoms, it's only usually detected during routine testing.

Symptoms only occur when blood pressure reaches a very high level, which is rare. 

In such circumstances, symptoms can include:

See a GP straight away if you experience these symptoms so that the cause can be investigated.

Untreated or poorly controlled high blood pressure is a major risk factor for a number of serious health conditions, including heart attack, stroke and kidney failure.

Kidney stones

Having ADPKD puts you at an 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 the tube that connects your kidney to your bladder (ureter), causing problems such as:

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

Contact a GP if you think you may have a kidney stone so they can try to find out what's causing your symptoms.

Urinary tract infections (UTIs)

Urinary tract infections (UTIs) are broadly classified into 1 of 2 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 ureters.

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

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 peeing
  • an urgent need to pee, where holding urine in becomes more difficult
  • unpleasant-smelling urine

Symptoms of an upper UTI can include:

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

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's 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, where waste products and excess fluid from the blood are removed, 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 is reached.