The Autoimmune Registry
Chronic interstitial cystitis Graphs for this disease are generated based on data from the All of Us database.
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  • Names
    • Chronic interstitial cystitis
    • Bladder pain syndrome
    • Painful bladder syndrome
    Abbreviations: IC, PBS
    Category: Bladder
    Prevalence From 35,329 to 74,992 cases in the US (Patnaik 2017). Female/Male ratio: 15.7x.
    Age of Onset Onset typically after 40 years old.
    Description Interstitial cystitis is a chronic disorder that affects the urinary system. Common symptoms include frequent urination, urinary urgency, pelvic pain, and pain during or after sexual intercourse. These symptoms can flare and can cause different levels of discomfort in different people. Some symptomatic flares last only days, while others can affect a person for months. Environmental factors that may cause symptoms to intensify include menstruation, stress, sexual activity, exercise, and specific foods and drinks. These symptoms can affect a person's quality of life. For example, a person with interstitial cystitis may feel the urge to urinate up to 60 times a day, causing interruptions in daily activities, including sleep.

    Currently, the cause of interstitial cystitis is unknown. There are two main theories about its cause. The first is damage to the tissue lining of the bladder. This damage allows toxins to leak into the bladder, further damaging the organ. The second theory is inflammation to the bladder. Both theorized causes could be due to an autoimmune disorder, leading the immune system to attack the bladder. The variety of treatments that are currently available fail to prevent the worsening of the disease, but can help with symptom relief.

    Not confirmed as an autoimmune or autoinflammatory disease.
    ICD-10 Code: N30.1     SNOMED Code: 197834003
    Patient Groups
    Bloggers
    Symptoms   
    Resources Link to Clinical Trials
    Link to PubMed
    References Link to Mayo Clinic
    Link to Cleveland Clinic
    Link to Healthline
    Profile by: Savannah Stultz
  • Profile updated September 2024
  • Charts generated Oct 12, 2024 at 12:54 PM ET
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    Chronic interstitial cystitis sex breakdown


    Chronic interstitial cystitis age breakdown


    Patient ethnicities

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    Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

  • Chronic interstitial cystitis top comorbidities/symptoms

    Chronic interstitial cystitis top autoimmune comorbidities


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    * Disease is suspected as autoimmune, but unconfirmed.
    Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. In the United States, because electronic health records use billing codes for diagnoses, some conditions may not be perfectly captured by these data, especially if the condition is rare. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

  • Anti-inflammatory / specialty medications and supplements

    Chronic interstitial cystitis top immunosuppressants / autoimmune therapies


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    * Biologic medications.
    Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

  • Quick Links
    Patient-reported 7-day average pain Patient-reported 7-day average fatigue General physical health General mental health Social and relationship satisfaction General quality of life Ability to carry out social roles and activities

    Patient-reported 7-day average pain


    Patient-reported 7-day average fatigue


    General physical health


    General mental health


    Social and relationship satisfaction


    General quality of life


    Ability to carry out social roles and activities


    Join the registry!

    Data Source: Graphs on this page represent data in self-reported survey results from the All of Us research database. As of July 2024, there are 560,000 participants who have completed these surveys. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

  • Quick Links
    Concerns about ability to pay Feeling unheard by healthcare providers Patient employment status Patient insurance coverage

    Concerns about ability to pay


    Feeling unheard by healthcare providers


    Patient employment status


    Patient insurance coverage


    Join the registry!

    Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.