National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Interstitial cystitis

Not a rare disease Not a rare disease
Other Names:
IC; Pelvic pain syndrome; Trigonitis; IC; Pelvic pain syndrome; Trigonitis; Painful bladder syndrome; PBS; Bladder pain syndrome; IC/BPS; IC/PBS; Interstitial cystitis/bladder pain syndrome; Interstitial cystitis/painful bladder syndrome See More
Categories:
Interstitial cystitis (IC) is a chronic condition that causes painful urinary symptoms. Symptoms and severity can vary. Some people may have only mild discomfort, or feel tenderness or pressure in the bladder or pelvis. Others may experience intense bladder pain, urgent or frequent needs to urinate, or pain during sexual intercourse.[1][2] Symptoms may be constant, or they may come and go.[3] Some people with IC have Hunner's ulcers (areas of inflammation on the bladder wall, identified by cytoscopy).[4]

The exact cause of IC is not known.[1][2] While the symptoms are similar to those of a bladder infection, IC is not an infection.[3] It occurs more commonly in women, and in people with other chronic pain disorders such as irritable bowel syndrome or fibromyalgia.[2]

There is no cure for IC, but there are treatment options to help relieve the symptoms.[5] No single treatment works for all people with IC. Often, people try different treatments or combinations of treatments before finding something that works.[2][3] Treatment options may include lifestyle changes, oral or topical medications, bladder instillations, neuromodulation therapy, Botox injections in the bladder muscles, and surgery (in rare cases).[3][5] Without treatment, IC can affect a person's sleep, daily activities, and social life.[3]
Last updated: 10/4/2017

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 10 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Abnormality of the labia 0000058
Abnormality of the menstrual cycle 0000140
Abnormality of the urethra
Urethra issue
0000795
Dyspareunia 0030016
Nocturia 0000017
Pain 0012531
Pollakisuria
Frequent urination
0100515
Urinary bladder inflammation 0100577
Urinary urgency
Overactive bladder
0000012
5%-29% of people have these symptoms
Abnormal vagina morphology 0000142
Showing of 10 |
Last updated: 7/1/2020

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Interstitial cystitis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Patient Registry

  • The Autoimmune Registry supports research for Interstitial cystitis by collecting information about patients with this and other autoimmune diseases. You can join the registry to share your information with researchers and receive updates about participating in new research studies. Learn more about registries.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Organizations Providing General Support

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Merck Manual for health care professionals provides information on Interstitial cystitis.
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

  1. Interstitial Cystitis (Painful Bladder Syndrome). National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). July, 2017; https://www.niddk.nih.gov/health-information/urologic-diseases/interstitial-cystitis-painful-bladder-syndrome/all-content.
  2. Interstitial cystitis. Mayo Clinic. August 12, 2017; http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357.
  3. Interstitial Cystitis. Urology Care Foundation. https://www.urologyhealth.org/urologic-conditions/interstitial-cystitis. Accessed 10/4/2017.
  4. Hunner's Ulcers. Interstitial Cystitis Association. March, 2015; https://www.ichelp.org/about-ic/symptoms-of-ic/hunners-ulcers/.
  5. IC Treatments. Interstitial Cystitis Association. January, 2013; https://www.ichelp.org/diagnosis-treatment/treatments/.