Living with Interstitial cystitis
A condition that causes bladder pain and frequent, urgent need to urinate, more common in women.
Understanding Interstitial cystitis
It is far more common in women than men. Symptoms vary. Some people have pain without urgency, and others have urgency without pain. In women, symptoms often get worse during periods, and there may be pain with sex. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bladder pain or discomfort
- Frequent urination
- Urgent need to urinate
- Pain with sex
- Symptoms that worsen during periods
- Depression
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Global Autoimmune Institute and Interstitial Cystitis Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute, Interstitial Cystitis Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cause of IC isn't known. There is no single test, so doctors often run tests to rule out other causes.
Also known as: bladder pain syndrome; chronic interstitial cystitis; ic/bps; ic/pbs; interstitial cystitis, chronic; interstitial cystitis/bladder pain syndrome
Patient organizations
- Autoimmune AssociationInterstitial cystitis · United States
- Global Autoimmune InstituteInterstitial cystitis · United States
- Interstitial Cystitis AssociationInterstitial cystitis · United States
- National Kidney FoundationInterstitial cystitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Interstitial cystitis.
Explore research for Interstitial cystitis
Explore actively recruiting Interstitial cystitis studies with HealthSpark.
Find actively recruiting studies for Interstitial cystitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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