The main symptom of autosomal dominant polycystic kidney disease (ADPKD) is multiple cysts (fluid-filled sacs), which begin to develop in some of the tissue of the kidneys.
Over time, the number and size of the cysts can increase, thus increasing the size of your kidneys. In some cases, the kidneys of older adults with ADKPD can be three times larger than those of other adults.
Both the cysts and the enlarged kidneys can cause a wide range of symptoms and complications.
Despite the fact that abnormal kidney development is thought to start soon after birth, most people do not have noticeable symptoms for many years. The average age for the onset of noticeable symptoms is 35 for the PKD1 type of ADPKD, and 61 for the PKD2 type of ADPKD.
High blood pressure
In ADPKD, most experts believe that high blood pressure (hypertension) is the first symptom to occur. An estimated 35% of children with ADPKD have high blood pressure.
High blood pressure does not usually cause any symptoms unless it reaches a very high level, which is very uncommon. However, in such circumstances symptoms can include:
- a headache
- blurred (double) vision
- nosebleeds
- shortness of breath
See the Health A-Z topic about High blood pressure for more information.
Pain
Pain is often the first noticeable symptom of ADPKD. The pain usually develops in your abdomen (tummy) or flank (the side of your body, between your bottom rib and hip bone).
The pain can range from moderate to severe. It is usually acute (short-lived), lasting for a few minutes to several days. The causes of pain associated with ADPKD can include:
- one or more of the cysts starting to bleed
- a kidney stone getting stuck in your kidney
- a kidney or other part of your urinary system, such as your bladder, becoming infected – these types of infections are known as urinary tract infections (UTIs).
See below for more information about kidney stones and UTIs.
Haematuria
Blood in your urine (haematuria) 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 of haematuria pass within a week without treatment.
Kidney stones
If you have ADPKD, you are much more likely to develop kidney stones than the population at large. Kidney stones are stone-like lumps that can develop in one or both of your kidneys.
Smaller kidney stones will pass out of your kidneys without causing any symptoms. However, larger stones can get blocked in your kidney or your ureter (the tube that attaches each kidney to the bladder).
Common symptoms of kidney stones include:
- intense pain in the back or side of your abdomen (tummy) or occasionally in your groin – the pain may last for minutes or hours and include intervals in between when there is no pain
- feeling restless and unable to lie still
- nausea (feeling sick)
- blood in your urine, which is often caused by the stone scratching the ureter
See the Health A-Z topic about Kidney stones for more information.
Urinary tract infections (UTIs)
If you have ADPKD, you are much more likely to develop a urinary tract infection (UTI) compared with the population at large, particularly if you are a woman. This is because women have a shorter distance between their anus (back passage) and their urethra (see below) than men. This makes it easier for bacteria to enter the urinary tract.
UTIs are broadly classified into one of two groups – lower UTIs and upper UTIs.
A lower UTI is an infection that develops inside:
- your bladder – a ‘balloon-shaped’ organ that is used to store urine
- your urethra – the tube that runs from the bladder through the penis (in males) or vulva (in females), through which urine passes
An upper UTI is an infection that develops inside:
- your kidneys
- your ureters – the tubes that connect each of your kidneys to your bladder
The symptoms of a lower UTI include:
- cloudy urine
- a need to urinate more frequently, either during the day or at night, or both
- pain or discomfort when passing urine
- an urgent need to urinate (holding in your urine becomes more difficult)
- unusually unpleasant smelling urine
The symptoms of an upper UTI include:
- a high temperature (fever) of 38ºC (100.4ºF) or above
- uncontrollable shivering
- nausea
- vomiting
- diarrhoea
See the Health A-Z topic about UTIs - introduction for more information.
When to seek medical advice
You should contact your GP if:
- you notice blood in your urine
- you think that you have a kidney stone
- you think that you have an upper UTI
All three of these symptoms are quite common and therefore may not be the result of ADPKD. However, they all require a medical diagnosis.
You should also contact your GP if you have two or more lower UTIs in the space of a year. You may have an underlying condition, such as ADPKD, which makes you more vulnerable to developing a lower UTI.
If a diagnosis of ADPKD is confirmed in one of your first-degree relatives (a parent or a brother or sister), you may want to talk to your GP about the advantages and disadvantages of being screened for the condition yourself. See ADPKD - diagnosis for more information about screening.
