A rare chronic debilitating urogenital disease characterized by urinary frequency, urgency, and pelvic pain.
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation on interstitial cystitis is limited primarily due to its rarity, affecting fewer than 5 in 10,000 people. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on its clinical features. Additionally, the complex nature of the condition and its overlap with other bladder disorders complicate the characterization of symptoms.
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 34 active clinical trials exploring various aspects of interstitial cystitis. Notably, pentosan polysulfate sodium is an FDA-approved treatment, while nifedipine is designated for development. For more information on ongoing trials, you can visit ClinicalTrials.gov and search for interstitial cystitis: https://clinicaltrials.gov/search?cond=interstitial%20cystitis.
Actionable guidance for navigating care for interstitial cystitis
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the interstitial cystitis community
Helpful links for rare disease information and support
The documentation on interstitial cystitis is limited primarily due to its rarity, affecting fewer than 5 in 10,000 people. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on its clinical features. Additionally, the complex nature of the condition and its overlap with other bladder disorders complicate the characterization of symptoms.
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 34 active clinical trials exploring various aspects of interstitial cystitis. Notably, pentosan polysulfate sodium is an FDA-approved treatment, while nifedipine is designated for development. For more information on ongoing trials, you can visit ClinicalTrials.gov and search for interstitial cystitis: https://clinicaltrials.gov/search?cond=interstitial%20cystitis.
Actionable guidance for navigating care for interstitial cystitis
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the interstitial cystitis community
Helpful links for rare disease information and support
The documentation on interstitial cystitis is limited primarily due to its rarity, affecting fewer than 5 in 10,000 people. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on its clinical features. Additionally, the complex nature of the condition and its overlap with other bladder disorders complicate the characterization of symptoms.
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 34 active clinical trials exploring various aspects of interstitial cystitis. Notably, pentosan polysulfate sodium is an FDA-approved treatment, while nifedipine is designated for development. For more information on ongoing trials, you can visit ClinicalTrials.gov and search for interstitial cystitis: https://clinicaltrials.gov/search?cond=interstitial%20cystitis.
Actionable guidance for navigating care for interstitial cystitis
To navigate your care for interstitial cystitis, consider seeking a urologist with expertise in chronic bladder conditions. Resources such as the International Painful Bladder Foundation (https://painful-bladder.org) and the Interstitial Cystitis Association (https://ichelp.org) can provide valuable support and information. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the interstitial cystitis community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
1 peer-reviewed source from PubMed
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 3 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.
AI-curated news mentioning interstitial cystitis
Updated Feb 18, 2026
A recent study published on PubMed explores the phenotypic characteristics and rare genetic variants associated with interstitial cystitis. This research enhances understanding of the genetic underpinnings of this complex condition.