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PubMed This is a summary of 59 peer-reviewed journal articles Updated
Urology

Understanding Interstitial Cystitis (IC/BPS)

At a Glance

Interstitial cystitis (IC/BPS) is a real, biological condition that causes chronic bladder pain and pressure without an active infection. It is often misdiagnosed as recurrent UTIs, but is actually driven by a damaged bladder lining and nerve inflammation.

If you have spent years visiting doctors for “recurrent urinary tract infections” (UTIs) only to be told your cultures are negative, or if you have been told your bladder pain is “all in your head,” your experience is unfortunately common [1][2]. Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) is a recognized, biological medical condition that causes chronic pain, pressure, and discomfort perceived to be related to the bladder [3][4].

The journey to an IC/BPS diagnosis is often long and frustrating [3]. Because there is no single definitive test and symptoms overlap with many other conditions, patients frequently face significant diagnostic delays [5][6]. You are not alone in this struggle; it is a complex condition that requires a specialized approach to identify correctly [7].

What is IC/BPS?

The American Urological Association (AUA) defines IC/BPS as an unpleasant sensation (which can be pain, pressure, or general discomfort) that lasts for more than six weeks and is linked to the urinary bladder [3]. These symptoms occur in the absence of a confirmed infection or other identifiable causes like bladder stones [4].

It is a “diagnosis of exclusion,” meaning doctors must first rule out other conditions [8]. While it is more frequently diagnosed in women, it affects people of all genders [9][1].

Why Does It Hurt?

IC/BPS is not just a “sensitive bladder.” It involves physical changes in the bladder wall and the nerves that surround it:

  • The GAG Layer Defect: Your bladder is lined with a protective coating called the glycosaminoglycan (GAG) layer [10]. In many people with IC/BPS, this “shield” is thin or damaged [11]. When the GAG layer is leaky, irritating substances in your urine (like potassium) can soak into the bladder wall [12].
  • Mast Cell Activation: Your bladder wall contains mast cells, which are part of your immune system [13]. In IC/BPS, these cells may become overactive, releasing chemicals like histamine that cause inflammation and keep your pain receptors on high alert [14].
  • Neurogenic Inflammation: This is a “short circuit” between your nerves and your immune system [13]. Nerves in the bladder send pain signals to the brain and, in return, release neuropeptides that cause further swelling and irritation in the bladder tissue [14].

Overlapping Conditions

It is common for IC/BPS to exist alongside other chronic conditions. Doctors call these comorbidities [15]. You may find that you also deal with Irritable Bowel Syndrome (IBS) [16], Vulvodynia (chronic vaginal pain) [17], or Fibromyalgia [15]. Recognizing these links is not a sign that your pain is “imaginary.” Instead, it helps doctors see the “big picture” of how your body processes pain and inflammation [1].

To help you navigate this condition, we have broken down the essential information into the following sections:

01

Is It Really IC? Symptoms and the Diagnostic Journey

Learn how Interstitial Cystitis (IC/BPS) is diagnosed. Understand the pain-filling cycle, common misdiagnoses like UTIs, and tests like cystoscopy.

02

Hunner Lesions vs. Non-Hunner IC: Understanding Your Specific Type

Learn the difference between Hunner Lesion IC and Non-Hunner IC. Discover how identifying your specific interstitial cystitis type guides targeted treatment.

03

Navigating Treatment Options for IC/BPS

Learn about modern IC/BPS treatment options. Explore behavioral therapies, medications like Elmiron, bladder instillations, and advanced procedures like Botox.

04

Building Your Care Team and Managing Daily Life

Learn how to manage daily life with interstitial cystitis (IC/BPS). Discover tips for building a care team, identifying diet triggers, and managing flares.

Common questions in this guide

What is interstitial cystitis (IC/BPS)?
Interstitial cystitis is a chronic condition that causes unpleasant sensations like pain, pressure, or discomfort in the urinary bladder for more than six weeks. It occurs without an active bacterial infection or other clear causes like bladder stones.
Why does my doctor think I have recurrent UTIs when my cultures are negative?
Because the symptoms of IC/BPS closely mirror those of a UTI, it is frequently misdiagnosed. If your urine cultures consistently come back negative or normal despite UTI-like pain and urgency, your symptoms may actually be caused by interstitial cystitis.
Why does my bladder hurt with interstitial cystitis?
Bladder pain in IC/BPS often results from a damaged protective lining in the bladder, called the GAG layer, which allows irritants in urine to seep into the bladder wall. Overactive mast cells and nerve inflammation also contribute to the chronic pain.
Does interstitial cystitis pain get worse when my bladder is full?
Yes, a hallmark sign of interstitial cystitis is experiencing increased pain, pressure, or urgency as your bladder fills with urine. Most patients find that their discomfort temporarily improves right after they urinate.
Can interstitial cystitis be linked to conditions like IBS or fibromyalgia?
Yes, it is very common for people with interstitial cystitis to have other overlapping chronic conditions. These often include Irritable Bowel Syndrome (IBS), fibromyalgia, and vulvodynia.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Do my symptoms match the American Urological Association's definition of IC/BPS?
  2. 2.Which clinical phenotype of IC/BPS (Hunner or non-Hunner) do you think best describes my symptoms?
  3. 3.How can we be sure my symptoms aren't being caused by a hidden infection, overactive bladder, or endometriosis?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (17)
  1. 1

    Quality-of-life impact of interstitial cystitis and other pelvic pain syndromes.

    Cunningham AR, Gu L, Dubinskaya A, et al.

    Frontiers in pain research (Lausanne, Switzerland) 2023; (4()):1149783 doi:10.3389/fpain.2023.1149783.

    PMID: 37305204
  2. 2

    Compensatory coping and depression in women with interstitial cystitis/bladder pain syndrome.

    Sutherland S, Grace Kelly A, Ryden A, et al.

    Neurourology and urodynamics 2023; (42(1)):322-329 doi:10.1002/nau.25089.

    PMID: 36378850
  3. 3

    Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome.

    Clemens JQ, Erickson DR, Varela NP, Lai HH

    The Journal of urology 2022; (208(1)):34-42 doi:10.1097/JU.0000000000002756.

    PMID: 35536143
  4. 4

    The association between vulvodynia and interstitial cystitis/bladder pain syndrome: A systematic review.

    Bosio S, Perossini S, Torella M, et al.

    International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics 2024; (167(1)):1-15 doi:10.1002/ijgo.15538.

    PMID: 38655714
  5. 5

    Cystoscopic evaluation and clinical phenotyping in interstitial cystitis/bladder pain syndrome

    Acar Ö, Tarcan T

    Journal of the Turkish German Gynecological Association 2019; (20(2)):117-122 doi:10.4274/jtgga.galenos.2018.2018.0102.

    PMID: 30457110
  6. 6

    Prevalence of Overactive Bladder Symptoms Among Women With Interstitial Cystitis/Bladder Pain Syndrome.

    Dubinskaya A, Tholemeier LN, Erickson T, et al.

    Female pelvic medicine & reconstructive surgery 2022; (28(3)):e115-e119 doi:10.1097/SPV.0000000000001166.

    PMID: 35272344
  7. 7

    Editorial: Special Issue "Biomarkers in Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS)".

    Neuhaus J, Gonsior A, Berndt-Paetz M

    Diagnostics (Basel, Switzerland) 2022; (12(7)) doi:10.3390/diagnostics12071689.

    PMID: 35885593
  8. 8

    Pathophysiology of interstitial cystitis.

    Birder LA

    International journal of urology : official journal of the Japanese Urological Association 2019; (26 Suppl 1()):12-15 doi:10.1111/iju.13985.

    PMID: 31144735
  9. 9

    Correlates of 1-Year Change in Quality of Life in Patients with Urologic Chronic Pelvic Pain Syndrome: Findings from the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.

    Clemens JQ, Stephens-Shields AJ, Newcomb C, et al.

    The Journal of urology 2020; (204(4)):754-759 doi:10.1097/JU.0000000000001080.

    PMID: 32294397
  10. 10

    Difference in electron microscopic findings among interstitial cystitis/bladder pain syndrome with distinct clinical and cystoscopic characteristics.

    Lee YK, Jhang JF, Jiang YH, et al.

    Scientific reports 2021; (11(1)):17258 doi:10.1038/s41598-021-96810-w.

    PMID: 34446784
  11. 11

    Development of an interstitial cystitis risk score for bladder permeability.

    Lamb LE, Janicki JJ, Bartolone SN, et al.

    PloS one 2017; (12(10)):e0185686 doi:10.1371/journal.pone.0185686.

    PMID: 29088231
  12. 12

    Novel Application of T1ρ Magnetic Resonance Imaging for Noninvasive Assessment of Bladder Hyperpermeability Biomarkers: A Focus on Glycosaminoglycan Content.

    Suyama JA, Statum SM, Mohana-Borges AVR, et al.

    Neurourology and urodynamics 2025; (44(5)):1081-1089 doi:10.1002/nau.70058.

    PMID: 40320728
  13. 13

    Advances in Cytokines and Inflammatory Mechanisms in the Pathogenesis of Interstitial Cystitis/Bladder Pain Syndrome.

    Xiao Y, Zhu D, Zhou X

    Biomolecules 2026; (16(1)) doi:10.3390/biom16010138.

    PMID: 41594678
  14. 14

    Epstein-Barr Virus as a Potential Etiology of Persistent Bladder Inflammation in Human Interstitial Cystitis/Bladder Pain Syndrome.

    Jhang JF, Hsu YH, Peng CW, et al.

    The Journal of urology 2018; (200(3)):590-596 doi:10.1016/j.juro.2018.03.133.

    PMID: 29653163
  15. 15

    Tanezumab Reduces Pain in Women with Interstitial Cystitis/Bladder Pain Syndrome and Patients with Nonurological Associated Somatic Syndromes.

    Nickel JC, Mills IW, Crook TJ, et al.

    The Journal of urology 2016; (195(4 Pt 1)):942-8.

    PMID: 26576710
  16. 16

    Somatic symptoms are sensitive in predicting interstitial cystitis/bladder pain syndrome.

    Chen IC, Lee M, Wu SL, et al.

    International journal of psychiatry in medicine 2017; (52(1)):48-61 doi:10.1177/0091217417703286.

    PMID: 28486876
  17. 17

    Similarities between interstitial cystitis/bladder pain syndrome and vulvodynia: implications for patient management.

    Fariello JY, Moldwin RM

    Translational andrology and urology 2015; (4(6)):643-52 doi:10.3978/j.issn.2223-4683.2015.10.09.

    PMID: 26816866

This page explains the basics of interstitial cystitis (IC/BPS) for educational purposes only. Always consult your urologist or healthcare provider for an accurate diagnosis and treatment plan for bladder pain.

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