Overview
Interstitial cystitis (IC), also called bladder pain syndrome (BPS) or painful bladder syndrome, is a long-term condition that causes ongoing pain, pressure, and discomfort in the bladder and surrounding pelvic area. Unlike a typical bladder infection, interstitial cystitis is not caused by bacteria, and antibiotics do not help. The exact cause is not fully understood, but researchers believe the bladder lining may be damaged or overly sensitive, allowing irritating substances in urine to reach the bladder wall and trigger pain and inflammation. The most common symptoms include a frequent and urgent need to urinate — sometimes more than 60 times a day — pelvic pain or pressure, and pain during or after sex. Symptoms can range from mild to severe and may come and go in flares, often triggered by certain foods, stress, menstruation, or physical activity. The condition affects people of all ages and genders, though it is diagnosed far more often in women. There is currently no cure for interstitial cystitis, but many treatments can help manage symptoms and improve quality of life. These include lifestyle changes, bladder training, physical therapy, oral medications, bladder instillations (liquid treatments placed directly into the bladder), and in some cases, procedures or surgery. With the right combination of treatments, many people are able to reduce their symptoms significantly and live active lives.
Also known as:
Key symptoms:
Frequent need to urinate, sometimes more than 60 times a daySudden, strong urge to urinate that is hard to controlPelvic pain or pressure, especially as the bladder fillsPain or burning in the bladder areaPain during or after sexual intercourseDiscomfort or pain in the lower abdomen, groin, or lower backWaking up multiple times at night to urinateFeeling of incomplete bladder emptyingSymptom flares triggered by certain foods, drinks, or stressChronic pelvic pain that does not go away
Clinical phenotype terms (19)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsWake Forest University Health Sciences — NA
Wake Forest University Health Sciences — NA
BLAD-HYA Group — NA
HillMed Inc. — EARLY_PHASE1
University of Wyoming — NA
Medipol University — NA
Ono Pharmaceutical Co. Ltd — PHASE2
Wake Forest University Health Sciences — EARLY_PHASE1
University Hospitals Cleveland Medical Center — NA
Vaneltix Pharma, Inc. — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableElmiron
Relief of bladder pain or discomfort associated with interstitial cystitis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Interstitial cystitis.
Community
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1 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What tests do I need to confirm that I have interstitial cystitis and rule out other conditions?,Which treatments would you recommend starting with, and how long before I might see improvement?,Are there specific foods or drinks I should avoid to reduce my symptoms?,What are the risks of long-term use of Elmiron, and should I have my eyes checked regularly?,Would pelvic floor physical therapy be helpful for me, and how do I find a qualified therapist?,What should I do if my symptoms suddenly get much worse?,Are there any clinical trials or newer treatments I should know about?
Common questions about Interstitial cystitis
What is Interstitial cystitis?
Interstitial cystitis (IC), also called bladder pain syndrome (BPS) or painful bladder syndrome, is a long-term condition that causes ongoing pain, pressure, and discomfort in the bladder and surrounding pelvic area. Unlike a typical bladder infection, interstitial cystitis is not caused by bacteria, and antibiotics do not help. The exact cause is not fully understood, but researchers believe the bladder lining may be damaged or overly sensitive, allowing irritating substances in urine to reach the bladder wall and trigger pain and inflammation. The most common symptoms include a frequent and
How is Interstitial cystitis inherited?
Interstitial cystitis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Interstitial cystitis typically begin?
Typical onset of Interstitial cystitis is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Interstitial cystitis?
Yes — 20 recruiting clinical trials are currently listed for Interstitial cystitis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Interstitial cystitis?
25 specialists and care centers treating Interstitial cystitis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Interstitial cystitis?
1 patient support program are currently tracked on UniteRare for Interstitial cystitis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.