Rare Medical News

Disease Profile

Interstitial cystitis

Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.



US Estimated


Europe Estimated

Age of onset





Autosomal dominant A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease.


Autosomal recessive Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype.


dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.


recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.


Mitochondrial or multigenic Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.


Multigenic or multifactor Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.


Not applicable


Other names (AKA)

IC; Pelvic pain syndrome; Trigonitis;


Kidney and Urinary Diseases


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 instillationsneuromodulation 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]


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.

Medical Terms Other Names
Learn More:
80%-99% of people have these symptoms
Abnormality of the labia
Abnormality of the menstrual cycle
Abnormality of the urethra
Urethra issue
Frequent urination
Urinary bladder inflammation
Urinary urgency
Overactive bladder
5%-29% of people have these symptoms
Abnormal vagina morphology


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.


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

      Learn more

      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.


          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; https://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/.