Polycystic kidney disease (PKD) is a genetic kidney condition that causes fluid-filled cysts to grow in the kidneys. Over time, these cysts can enlarge the kidneys and affect how they function.
PKD symptoms vary widely. Some people notice changes early. Others may have no symptoms for many years.
This page explains common symptoms of PKD, including autosomal dominant PKD (ADPKD) and autosomal recessive PKD (ARPKD).
You don’t need to experience all of these symptoms to have PKD. And having some of these symptoms does not automatically mean you have PKD. A healthcare professional can help with proper testing and diagnosis.
Early Symptoms of ADPKD (Autosomal Dominant PKD)
ADPKD is the most common form of polycystic kidney disease. Symptoms often appear in adulthood, but they can develop earlier.
Common early signs of ADPKD include:
- High blood pressure (often one of the first signs)
- Back or side pain
- Headaches
- Blood in the urine (hematuria)
- Frequent urinary tract infections (UTIs)
- Feeling of fullness or abdominal enlargement
Many people with ADPKD feel well for years before kidney function declines. High blood pressure may be the earliest measurable symptom. Find a symptom checklist you can take to a healthcare appointment on this web page.
Symptoms as PKD Progresses
As cysts grow and kidney function changes, additional symptoms may appear:
- Ongoing fatigue
- Decreased kidney function (changes in lab tests)
- Swelling in the legs or ankles
- Shortness of breath
- Nausea or appetite changes
- Increased urination, especially at night
PKD progression is different for everyone. Some people experience slow changes over decades. Others may see faster decline. Monitoring kidney function through blood and urine tests is important for understanding progression.
Pain and PKD
Pain is one of the most commonly reported PKD symptoms.
It may feel like:
- Dull, ongoing back or side pain
- Sudden sharp pain (sometimes from cyst rupture or kidney stones)
- Abdominal pressure from enlarged kidneys
Pain management is an important part of PKD care and should be discussed with a healthcare provider.
ARPKD Symptoms (Autosomal Recessive PKD)
ARPKD is less common and typically diagnosed in infancy or childhood.
Symptoms of ARPKD may include:
- Enlarged kidneys visible on ultrasound
- High blood pressure in children
- Breathing difficulties in newborns
- Growth delays
- Liver complications
ARPKD can vary in severity. Some children require intensive early care, while others live into adulthood.
Symptoms Outside the Kidneys
PKD can affect other parts of the body. Possible non-kidney symptoms include:
- Liver cysts
- Kidney stones
- Increased risk of brain aneurysm (in some families)
- Heart valve abnormalities
Not everyone experiences these complications, but awareness helps with proactive care.
When to See a Doctor
You should speak with a healthcare professional if you:
- Have a family history of polycystic kidney disease
- Experience persistent high blood pressure
- Notice blood in your urine
- Have ongoing unexplained back or side pain
Diagnosis usually involves imaging (ultrasound, CT, or MRI) and sometimes genetic testing. Many people live full, meaningful lives with PKD.
Early monitoring, blood pressure control, lifestyle changes, and specialist care can help slow progression and manage symptoms.
If you have recently been diagnosed or are concerned about PKD symptoms, you are not alone. Support and education are available.
Learn more about:
- What is polycystic kidney disease?
- Living with PKD
- PKD family planning and genetics
- PKD support and community
You Don’t Have to Figure This Out Alone
Understanding PKD symptoms is often the first step.
The PKD Foundation of Canada provides trusted information, patient education, and support programs for individuals and families affected by polycystic kidney disease.
Take your time. Learn at your pace. There is support when you’re ready.