Health condition
Polycystic kidney disease
Autosomal dominant polycystic kidney disease (ADPKD) causes numerous cysts to grow in both kidneys over decades. It is the commonest inherited kidney disease - and treatment can now slow it.
Why trust this guide
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Editorial team
Written by our editorial team from the UK sources listed on each page.
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Sourced from guidance
Checked against current NHS and UK specialist society guidance at the time of review.
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Current for 2026
Reviewed on 2026-09-27 with the next review scheduled for 2027-09-27.
Key facts
The essentials at a glance.
The symptoms to recognise, when to seek help, which specialist to see, and what treatment usually involves.
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Possible symptoms: flank pain or fullness, blood in urine, kidney stones, urine infections and high blood pressure - often starting in the 30s and 40s
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Seek prompt help for sudden severe flank pain (cyst bleed, stone or infection), fever with flank pain, or a sudden severe headache (a rare associated aneurysm can run in families)
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Specialist: a consultant nephrologist usually leads assessment and treatment
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Care includes strict blood pressure control, high fluid intake, tolvaptan for those with rapidly progressive disease, and family screening
Understanding the condition
What it is and what happens next.
What causes it, how it is diagnosed, and the treatment routes available in the UK.
What it is and how it feels
ADPKD is caused by variants in the PKD1 or PKD2 genes; each child of an affected parent has a 50% chance of inheriting it. Cysts enlarge the kidneys and squeeze working tissue over decades - PKD1 disease typically progresses faster, with kidney failure often in the 50s, while PKD2 runs a milder course. High blood pressure usually arrives years before kidney function falls.
Diagnosis and treatment routes
Diagnosis is usually by ultrasound with family history, with genetic testing in uncertain cases. Management has moved from watchful waiting to active protection: tight blood pressure targets, and tolvaptan - the first drug shown to slow cyst growth and function decline - for those with evidence of rapid progression, alongside screening and counselling for relatives. In many parts of the UK, routine NHS referrals for this kind of problem currently take 20-45+ weeks, whereas an initial appointment with a private consultant is typically available within around two weeks.
Seeing a specialist
Who to see, and how quickly you can be seen.
The specialist for this condition is usually a consultant nephrologist. Your GP can refer you on the NHS, or you can arrange a private consultation directly.
A quiet reminder
This guide is for information, not medical advice.
Your GP knows your history and can tell you which parts apply to you. If in doubt, see them - and seek urgent care for any of the emergency symptoms described above.
Frequently asked
Common questions about Polycystic kidney disease.
Quick, plain-English answers to what people ask us most.
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What is polycystic kidney disease?
Polycystic kidney disease is an inherited condition causing numerous fluid-filled cysts to develop in the kidneys, gradually enlarging them and, over time, impairing kidney function.
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What causes polycystic kidney disease?
It's caused by inherited mutations in specific genes (most commonly PKD1 or PKD2) that affect normal kidney cell structure and function, leading to cyst formation over many years.
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What are the symptoms?
High blood pressure, back or flank pain, blood in the urine, urinary tract infections, and, in advanced stages, symptoms of reduced kidney function are common, though early stages can be symptom-free.
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Is polycystic kidney disease serious?
Yes, it's a significant condition that, over decades, can progress to kidney failure in a substantial proportion of people, though the rate of progression varies considerably between individuals.
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Is polycystic kidney disease hereditary?
Yes, the most common form is inherited in an autosomal dominant pattern, meaning each child of an affected parent has a 50% chance of inheriting the condition.
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Can polycystic kidney disease be treated?
There's no cure, but treatment includes blood pressure control, a specific medication (tolvaptan) that can slow disease progression in some patients, and management of complications, with dialysis or transplant needed if kidney failure develops.
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How is polycystic kidney disease diagnosed?
Ultrasound or other imaging showing multiple kidney cysts, combined with family history and sometimes genetic testing, establishes the diagnosis.
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How is progression monitored?
Regular blood tests to monitor kidney function, blood pressure checks, and periodic imaging help track disease progression and guide treatment decisions over time.
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Polycystic kidney disease vs simple kidney cysts — what's the difference?
Simple kidney cysts are common, usually harmless, isolated findings that don't affect kidney function, while polycystic kidney disease involves numerous cysts throughout both kidneys and progressively affects kidney function; imaging and family history help distinguish between them.
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When should I see a specialist, and how quickly can I be seen privately?
See a nephrologist if you have a family history of polycystic kidney disease or relevant symptoms. Private specialist assessment is typically available within about two weeks, faster than standard NHS renal referral waiting times.