Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, the pain can be constant and quite severe. For these patients, surgery may be needed.
If you have a few very big cysts causing the pain, they can be aspirated and sclerosed with chemicals that are injected into cysts. Sclerosis is done using an ultrasound or CAT scan to guide your doctor to insert a needle into the cyst(s), drain the fluid, and then coat the cyst wall with a sclerosing substance to remove the cyst’s lining cells. If you have severe pain due to a greatly enlarged polycystic kidney, surgical approaches may also be considered. For example, laproscopic cyst decortication or surgical nephrectomy may be possible, especially if you are already on dialysis/end stage renal disease.
Pain is a very subjective feeling. Only the person feeling the pain can measure how bad it is. It is important to remember that pain frequency and tolerance vary greatly among individuals. Pain tolerance appears to be influenced by a person’s cultural background, expectations, behaviors, physical and emotional health. For this reason, pain clinics that utilize biofeedback and support groups can be very helpful in managing your pain. Pain clinics are sometimes a division of the anesthesiology department of a surgical hospital. To find a pain clinic, talk with your doctor or nephrologist to be directed to one that can help you with your specific PKD pain needs.
The PKD Foundation does not offer medical advice. The information shared on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We strongly recommend that your care and treatment decisions be made in consultation with your healthcare professional team.
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Page last reviewed June 2021