Joint Terminology Report: Terminology Standardization for Female Bladder Pain Syndrome

other OA: closed public-domain-us
Full text JSON View on PubMed View at publisher

Abstract

Female bladder pain syndrome (FBPS), previously known as interstitial cystitis/bladder pain syndrome, is a life-altering and morbid condition that occurs primarily in female patients and can be variable in presentation. Given the absence of pathognomonic symptoms and sensitive diagnostic tests, significant symptomatic overlap with numerous other pelvic conditions (such as pelvic floor tension myalgia or endometriosis) occurring in women makes diagnosis of FBPS challenging. The frequent co-occurrence of FBPS with other pain conditions and functional somatic syndromes further complicates diagnosis and management. The challenges have limited the progress made in understanding the pathophysiology of the condition and improving approaches to treatment and prevention. Improvement in standardization of the terminology used to describe this unique condition is needed to improve the accuracy of diagnosis and the clinical care for affected patients. Given the variability in presentation and the differing definitions for the condition world-wide, the American Urogynecologic Society and the International Urogynecologic Association convened a joint writing group to standardize terminology around common signs and symptoms of the condition and to clarify the diagnosis as it pertains to female patients with the condition. After careful consideration of a broad range of available data and clinical experiences, consensus opinion recommended adopting the term "FBPS" instead of the misleading "interstitial cystitis" to describe a chronic, intermittent condition of at least 3 months' duration affecting women involving symptoms of pain or discomfort localized to the bladder, often with bladder filling, which are not attributed to other pathology. This term will allow clinicians, researchers, and learners alike to standardize their understanding of FBPS.
Full text 18,913 characters · extracted from oa-doi-fallback · 3 sections · click to expand

Abstract

Female bladder pain syndrome (FBPS), previously known as interstitial cystitis/bladder pain syndrome, is a life-altering and morbid condition that occurs primarily in female patients and can be variable in presentation. Given the absence of pathognomonic symptoms and sensitive diagnostic tests, significant symptomatic overlap with numerous other pelvic conditions (such as pelvic floor tension myalgia or endometriosis) occurring in women makes diagnosis of FBPS challenging. The frequent co-occurrence of FBPS with other pain conditions and functional somatic syndromes further complicates diagnosis and management. The challenges have limited the progress made in understanding the pathophysiology of the condition and improving approaches to treatment and prevention. Improvement in standardization of the terminology used to describe this unique condition is needed to improve the accuracy of diagnosis and the clinical care for affected patients. Given the variability in presentation and the differing definitions for the condition world-wide, the American Urogynecologic Society and the International Urogynecologic Association convened a joint writing group to standardize terminology around common signs and symptoms of the condition and to clarify the diagnosis as it pertains to female patients with the condition. After careful consideration of a broad range of available data and clinical experiences, consensus opinion recommended adopting the term “FBPS” instead of the misleading “interstitial cystitis” to describe a chronic, intermittent condition of at least 3 months’ duration affecting women involving symptoms of pain or discomfort localized to the bladder, often with bladder filling, which are not attributed to other pathology. This term will allow clinicians, researchers, and learners alike to standardize their understanding of FBPS. Similar content being viewed by others

References

Clemens JQ, Meenan RT, Rosetti MC, Gao SY, Calhoun EA. Prevalence and incidence of interstitial cystitis in a managed care population. J Urol. 2005;173(1):98–102 (discussion 102). Konkle KS, Berry SH, Elliott MN, Hilton L, Suttorp MJ, Clauw DJ, Clemens JQ. Comparison of an interstitial cystitis/bladder pain syndrome clinical cohort with symptomatic community women from the RAND Interstitial Cystitis Epidemiology study. J Urol. 2012;187(2):508–12. Clemens JQ, Link CL, Eggers PW, Kusek JW, Nyberg Jr LN, McKinlay JB; BACH Survey Investigators. Prevalence of painful bladder symptoms and effect on quality of life in Black, Hispanic and white men and women. J Urol. 2007;177(4):1390–4. Nortjé N, Albertyn R. The cultural language of pain: a South African study. S Afr Fam Pract. 2015;57(1):24–7. Skene AJC. Diseases of the bladder and urethra in women. New York: Wood; 1878. Hunner GL. A rare type of bladder ulcer in women, report of cases. Boston Med Surg J. 1915;172:660–4. Hanno PM, Landis JR, Matthews-Cook Y, Kusek J, Nyberg L Jr. The diagnosis of interstitial cystitis revisited: lessons learned from the National Institutes of Health Interstitial Cystitis Database study. J Urol. 1999;161(2):553–7. Hanno PM, Erickson D, Moldwin R, Faraday MM, American Urological Association. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome: AUA guideline amendment. J Urol. 2015;193(5):1545–53. Akiyama Y, Luo Y, Hanno PM, Maeda D, Homma Y. Interstitial cystitis/bladder pain syndrome: the evolving landscape, animal models and future perspectives. Int J Urol. 2020;27(6):491–503. Van de Merwe JP, Nordling J, Bouchelouche P, Bouchelouche K, Cervigni M, Kurosch Daha L, et al. Diagnostic criteria, classification, and nomenclature for painful bladder syndrome/interstitial cystitis: an ESSIC proposal. Eur Urol. 2008;53(1):60–7. Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, et al. The standardisation of terminology in lower urinary tract function: report from the standardisation sub-committee of the International Continence Society. Urology. 2003;61(1):37–49. Ueda T, Sant GR, Hanno PM, Yoshimura N. Interstitial cystitis and frequency-urgency syndrome (OAB syndrome). Int J Urol. 2003;10(Suppl):S39–48. Proano A, Garde G, Garrido G, Mazza O. ESSIC criteria for the diagnosis of bladder pain syndrome/interstitial cystitis (BPS/IC) and comparison with the NIDDK criteria. Arch Esp Urol. 2013;66(2):206–14. Parsons CL. Interstitial cystitis: epidemiology and clinical presentation. Clin Obstet Gynecol. 2002;45(1):242–9. Warren JW, Meyer WA, Greenberg P, Horne L, Diggs C, Tracy JK. Using the International Continence Society’s definition of painful bladder syndrome. Urology. 2006;67(6):1138–42. Homma Y, Gotoh M. Symptom severity and patient perceptions in overactive bladder: how are they related? BJU Int. 2009;104(7):968–72. Homma Y, Ueda T, Tomoe H, Lin AT, Kuo H-C, Lee M-H, et al. Clinical guidelines for interstitial cystitis and hypersensitive bladder updated in 2015. Int J Urol. 2016;23(7):542–9. Engeler D, Baranowski AP, Berghmans B, et al. EAU Guidelines on Chronic Pelvic Pain. Paper presented at: EAU Annual Congress 2023; Milan, Italy. Hanno P, Cervigni M, Dinis P, et al. Bladder pain syndrome. In: Abrams P, Cardozo L, Wagg A, Wein A, eds. Incontinence. 6th Edition. Bristol: International Continence Society; 2017. Cox A, Golda N, Nadeau G, Nickel JC, Carr L, Corcos J, Teichman J. CUA guideline: diagnosis and treatment of interstitial cystitis/bladder pain syndrome. Can Urol Assoc J. 2016;10(5–6):E136–55. Doggweiler R, Whitmore KE, Meijlink JM, Drake MJ, Frawley H, Nordling J, et al. A standard for terminology in chronic pelvic pain syndromes: a report from the chronic pelvic pain working group of the international continence society. Neurourol Urodyn. 2017;36(4):984–1008. Tirlapur SA, Birch JV, Carberry CL, Khan KS, Latthe PM, Jha S, et al. Management of bladder pain syndrome: green-top guideline No. 70. BJOG. 2017;124(2):e46–72. Haylen BT, de Ridder D, Freeman RM, Swift SE, Berghmans B, Lee J, et al. An International Urogynecological Association (IUGA)/International Continence Society (ICS) joint report on the terminology for female pelvic floor dysfunction. Int Urogynecol J. 2010;21(1):5–26. Haylen BT, de Ridder D, Freeman RM, Swift SE, Berghmans B, Lee J, et al. An International Urogynecological Association (IUGA)/International Continence Society (ICS) joint report on the terminology for female pelvic floor dysfunction. Neurourol Urodyn. 2010;29(1):4–20. Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, et al. The standardisation of terminology of lower urinary tract function: report from the Standardisation Sub-committee of the International Continence Society. Am J Obstet Gynecol. 2002;187(1):116–26. Lai HH, Vetter J, Song J, Andriole GL, Colditz GA, Sutcliffe S. Management of symptom flares and patient-reported flare triggers in Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS)—findings from one site of the MAPP research network. Urology. 2019;126:24–33. Sutcliffe S, Bradley CS, Clemens JQ, James AS, Konkle KS, Kreder KJ, et al. Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network. Int Urogynecol J. 2015;26(7):1047–60. Sutcliffe S, Colditz GA, Goodman MS, Pakpahan R, Vetter J, Ness TJ, et al. Urological chronic pelvic pain syndrome symptom flares: characterisation of the full range of flares at two sites in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. BJU Int. 2014;114(6):916–25. Sutcliffe S, Colditz GA, Pakpahan R, Bradley CS, Goodman MS, Andriole GL, Lai HH. Changes in symptoms during urologic chronic pelvic pain syndrome symptom flares: findings from one site of the MAPP Research Network. Neurourol Urodyn. 2015;34(2):188–95. Whitmore KE, Fall M, Sengiku A, Tomoe H, Logadottir Y, Kim YH. Hunner lesion versus non-Hunner lesion interstitial cystitis/bladder pain syndrome. Int J Urol. 2019;26(Suppl 1):26–34. Ronstrom C, Lai HH. Presenting an atlas of Hunner lesions in interstitial cystitis which can be identified with office cystoscopy. Neurourol Urodyn. 2020;39(8):2394–400. Clemens JQ, Erickson DR, Varela NP, Lai HH. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome. J Urol. 2022;208(1):34–42. Hanno P. International Journal of Urology supplement 3rd International Consultation Interstitial Cystitis Japan (ICICJ) and International Society for the Study of Bladder Pain Syndrome (ESSIC) Joint Meeting 21–23 March 2013 Kyoto, Japan. Preface. Int J Urol. 2014;21(Suppl 1):3. Pastore EA, Katzman WB. Recognizing myofascial pelvic pain in the female patient with chronic pelvic pain. J Obstet Gynecol Neonatal Nurs. 2012;41(5):680–91. Lubeck DP, Whitmore K, Sant GR, Alvarez-Horine S, Lai C. Psychometric validation of the O’Leary-Sant interstitial cystitis symptom index in a clinical trial of pentosan polysulfate sodium. Urology. 2001;57(6 Suppl 1):62–6. Brewer ME, White WM, Klein FA, Klein LM, Waters WB. Validity of pelvic pain, urgency, and frequency questionnaire in patients with interstitial cystitis/painful bladder syndrome. Urology. 2007;70(4):646–9. Minaglia S, Ozel B, Nguyen JN, Mishell DR Jr. Validation of Spanish version of pelvic Pain and Urgency/Frequency (PUF) patient symptom scale. Urology. 2005;65(4):664–9. Goin JE, Olaleye D, Peters KM, Steinert B, Habicht K, Wynant G. Psychometric analysis of the University of Wisconsin Interstitial Cystitis Scale: implications for use in randomized clinical trials. J Urol. 1998;159(3):1085–90. Humphrey L, Arbuckle R, Moldwin R, Nordling J, van de Merwe JP, Meunier J, et al. The bladder pain/interstitial cystitis symptom score: development, validation, and identification of a cut score. Eur Urol. 2012;61(2):271–9. Arlandis S, Franco A, Mora AM, Rebollo P. Validation of the Spanish version of the Bladder Pain/Interstitial Cystitis-Symptom Score (BPIC-SS) questionnaire. A useful tool for the diagnosis of bladder pain syndrome. Actas Urol Esp (Engl Ed). 2018;42(7):457–64. Clemens JQ, Calhoun EA, Litwin MS, McNaughton-Collins M, Kusek JW, Crowley EM, et al. Validation of a modified National Institutes of Health chronic prostatitis symptom index to assess genitourinary pain in both men and women. Urology. 2009;74(5):983–7; quiz 987.e1–3). Kelly AM. Does the clinically significant difference in visual analog scale pain scores vary with gender, age, or cause of pain? Acad Emerg Med. 1998;5(11):1086–90. Offiah I, McMahon SB, O’Reilly BA. Interstitial cystitis/bladder pain syndrome: diagnosis and management. Int Urogynecol J. 2013;24(8):1243–56. Volpe KA, Griggs C, Dancz CE, Horton C, Velasco VS, Gomez G, et al. Translation and linguistic validation of the Female Genitourinary Pain Index in Spanish. Int Urogynecol J. 2021;32(12):3217–22. De Wachter S, Wyndaele JJ. Frequency-volume charts: a tool to evaluate bladder sensation. Neurourol Urodyn. 2003;22(7):638–42. Kim SH, Oh SA, Oh SJ. Voiding diary might serve as a useful tool to understand differences between bladder pain syndrome/interstitial cystitis and overactive bladder. Int J Urol. 2014;21(2):179–83. Boudry G, Labat JJ, Riant T, Le Normand L, Manunta A, Bensalah K, Rigaud J. Validation of voiding diary for stratification of bladder pain syndrome according to the presence/absence of cystoscopic abnormalities: a two-centre prospective study. BJU Int. 2013;112(2):E164–8. Friedlander JI, Shorter B, Moldwin RM. Diet and its role in interstitial cystitis/bladder pain syndrome (IC/BPS) and comorbid conditions. BJU Int. 2012;109(11):1584–91. Powell-Boone T, Ness TJ, Cannon R, Lloyd LK, Weigent DA, Fillingim RB. Menstrual cycle affects bladder pain sensation in subjects with interstitial cystitis. J Urol. 2005;174(5):1832–6. Al-Hadithi HN, Williams H, Hart CA, Frazer M, Adams EJ, Richmond DH, Tincello DG. Absence of bacterial and viral DNA in bladder biopsies from patients with interstitial cystitis/chronic pelvic pain syndrome. J Urol. 2005;174(1):151–4. Magalhaes TF, Baracat EC, Doumouchtsis SK, Haddad JM. Biomarkers in the diagnosis and symptom assessment of patients with bladder pain syndrome: a systematic review. Int Urogynecol J. 2019;30(11):1785–94. Waxman JA, Sulak PJ, Kuehl TJ. Cystoscopic findings consistent with interstitial cystitis in normal women undergoing tubal ligation. J Urol. 1998;160(5):1663–7. Cole EE, Scarpero HM, Dmochowski RR. Are patient symptoms predictive of the diagnostic and/or therapeutic value of hydrodistention? Neurourol Urodyn. 2005;24(7):638–42. Messing E, Pauk D, Schaeffer A, Nieweglowski M, Nyberg Jr LM, Landis JR, et al. Associations among cystoscopic findings and symptoms and physical examination findings in women enrolled in the Interstitial Cystitis Data Base (ICDB) Study. Urology. 1997;49(5A Suppl):81–5. Akiyama Y, Homma Y, Maeda D. Pathology and terminology of interstitial cystitis/bladder pain syndrome: a review. Histol Histopathol. 2019;34(1):25–32. Khullar V, Chermansky C, Tarcan T, Rahnama'i MS, Digesu A, Sahai A, et al. How can we improve the diagnosis and management of bladder pain syndrome? Part 1: ICI-RS 2018. Neurourol Urodyn. 2019;38(Suppl 5):S66–70. Lai HH, Newcomb C, Harte S, Appleby D, Ackerman AL, Anger JT, et al. Comparison of deep phenotyping features of UCPPS with and without Hunner lesion: a MAPP-II Research Network Study. Neurourol Urodyn. 2021;40(3):810–8. Pape J, Falconi G, De Mattos Lourenco TR, Doumouchtsis SK, Betschart C. Variations in bladder pain syndrome/interstitial cystitis (IC) definitions, pathogenesis, diagnostics and treatment: a systematic review and evaluation of national and international guidelines. Int Urogynecol J. 2019;30(11):1795–805. Constantinou CE, Hvistendahl G, Ryhammer A, Nagel LL, Djurhuus JC. Determining the displacement of the pelvic floor and pelvic organs during voluntary contractions using magnetic resonance imaging in younger and older women. BJU Int. 2002;90(4):408–14. Tyagi P, Moon CH, Janicki J, Kaufman J, Chancellor M, Yoshimura N, Chermansky C. Recent advances in imaging and understanding interstitial cystitis. 2018;7. Ackerman AL, Lee UJ, Jellison FC, Tan N, Patel M, Raman SS, Rodriguez LV. MRI suggests increased tonicity of the levator ani in women with interstitial cystitis/bladder pain syndrome. Int Urogynecol J. 2016;27(1):77–83. Neale A, Malik N, Taylor C, Sahai A, Malde S. Bladder pain syndrome/interstitial cystitis in contemporary UK practice: outcomes of phenotype-directed management. Low Urin Tract Symptoms. 2021;13(1):123–8. Gillenwater JY, Wein AJ. Summary of the National Institute of Arthritis, Diabetes, Digestive and Kidney Diseases Workshop on Interstitial Cystitis, National Institutes of Health, Bethesda, Maryland, August 28–29, 1987. J Urol. 1988;140(1):203–6. Kirkemo A, Peabody M, Diokno AC, Afanasyev A, Nyberg LM Jr, Landis JR, et al. Associations among urodynamic findings and symptoms in women enrolled in the Interstitial Cystitis Data Base (ICDB) Study. Urology. 1997;49(5A Suppl):76–80. Hanno P. Is the potassium sensitivity test a valid and useful test for the diagnosis of interstitial cystitis? Against. Int Urogynecol J Pelvic Floor Dysfunct. 2005;16(6):428–9. Abernethy MG, Rosenfeld A, White JR, Mueller MG, Lewicky-Gaupp C, Kenton K. Urinary microbiome and cytokine levels in women with interstitial cystitis. Obstet Gynecol. 2017;129(3):500–6. Ball C, Sackett D, Phillips B, Haynes B, Straus S. Levels of evidence and grades of recommendations. Centre for Evidence-Based Medicine. https://www.cebm.ox.ac.uk/resources/levels-of-evidence/oxford-centre-for-evidence-based-medicine-levels-of-evidence-march-2009. Accessed 13 Jan 2024. FitzGerald MP, Payne CK, Lukacz ES, Yang C, Peters KM, Chai TC, et al. Randomized multicenter clinical trial of myofascial physical therapy in women with interstitial cystitis/painful bladder syndrome and pelvic floor tenderness. J Urol. 2012;187(6):2113–8.

Acknowledgements

The International Urogynecological Association and the American Urogynecologic Society would like to extend special thanks to Dr. Sarah Collins for spearheading a thorough review of this document. The joint societies would also like to thank and acknowledge the substantial contributions made by Dr. A. Lenore Ackerman and Dr. Lauren de Winter in reviewing and extensively revising this document. The following writing group members are being recognized for their contributions to this article: Writing Group Chair: Vik Khullar. IUGA Writing Group Members: Vik Khullar, BSc, MBBS, MD, Imperial College, London, UK; Amita Jain, MS (Obs-Gyn), Medanta – The Medicity, Gurugram, India; Andreas Chrysostomou, MD, PhD, University of Witwatersrand, Johannesburg, South Africa; Genevieve Nadeau, MD, MSc, Université Laval, Quebec, Canada; Mauro Cervigni, MD, Catholic University, Rome, Italy; AUGS Writing Group Members: Radhika Patnam, MD, Allegheny Health Network, Pittsburgh, PA, USA; Rhonda K. Kotarinos, DPT, MS, Kotarinos Physical Therapy Limited, Vernon Hills, IL, USA; A. Lenore Ackerman, MD, PhD, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA; Doreen E. Chung, MD, Columbia University Irving Medical Center, New York, NY, USA; K. Lauren de Winter, MD, Praxis Urogynecology, Long Beach, CA, USA; Sarah Collins, MD, Chair, Terminology and Standardization Committee, IUGA, University of Chicago, Chicago, IL, USA. Author information Authors and Affiliations Consortia Ethics declarations Conflict of interest The authors have no conflicts of interest to declare. Additional information Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Individual writing group members are noted in the Acknowledgements section. This report is being published concurrently in International Urogynecology Journal and in Urogynecology. The report is identical except for minor stylistic and spelling differences in keeping with each journal’s style. Citations from any of the two journals can be used when citing this article. Correspondence: Vik Khullar, Imperial College, London, UK. E-mail: [email protected] Rights and permissions Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law. About this article Cite this article Developed by the Joint Writing Group of the International Urogynecological Association and the American Urogynecologic Society. Joint Terminology Report: Terminology Standardization for Female Bladder Pain Syndrome. Int Urogynecol J 36, 265–277 (2025). https://doi.org/10.1007/s00192-024-05923-z Accepted: Published: Version of record: Issue date: DOI: https://doi.org/10.1007/s00192-024-05923-z

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

Ask this paper AI returns verbatim quotes from the full text · source: oa-doi-fallback

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

Condition tags

mesh:D017699endometriosisinterstitial_cystitis

MeSH descriptors

Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial Cystitis, Interstitial

Citation neighborhood (no data yet)

We don't have any in-corpus citations linked to this paper yet. This is a recent paper (2025) — citers typically take a year or two to land, and the OpenAlex reference graph may still be filling in.

Source provenance

europepmc
last seen: 2026-06-04T01:30:01.192114+00:00
pubmed
last seen: 2026-05-26T00:31:57.943529+00:00
unpaywall
last seen: 2026-05-11T08:34:28.763810+00:00
License: public-domain-us · commercial use OK · attribution required
Courtesy of the U.S. National Library of Medicine