Skip to main content

Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network

International Urogynecology Journal volume 26, pages 1047–1060 (2015)Cite this article

Abstract

Introduction and hypothesis

Although in-depth qualitative information is critical to understanding patients’ symptom experiences and to developing patient-centered outcome measures, only one previous qualitative study has assessed urological chronic pelvic pain syndrome (UCPPS) symptom exacerbations (“flares”).

Methods

We conducted eight focus groups of female UCPPS (interstitial cystitis/bladder pain syndrome) patients at four sites from the MAPP Research Network (n = 57, mean = 7/group) to explore the full spectrum of flares and their impact on patients’ lives.

Results

Flare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent nonpelvic symptoms (e.g., diarrhea), symptom intensity (mild to severe), duration (minutes to years), and frequency (daily to < once/year), although the most commonly described flares were painful flares lasting days. These latter flares were also most disruptive to participants’ lives, causing some to cancel social events, miss work or school, and in the worst cases, go to the emergency room or on disability leave. Participants also reported a longer-term impact of flares, including negative effects on their sexual functioning and marital, family, and social relationships; and the loss of employment or limited career or educational advancement. Emerging themes included the need for a sense of control over unpredictable symptoms and reduced social engagement.

Conclusions

Given their negative impact, future research should focus on approaches to prevent flares, and to reduce their frequency, severity, and/or duration. Patients’ quality of life may also be improved by providing them with a sense of control over their symptoms through ready access to flare medications/therapy, and by engaging them socially.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price includes VAT (USA)
Tax calculation will be finalised during checkout.

References

  1. Hanno P, Dmochowski R (2009) Status of international consensus on interstitial cystitis/bladder pain syndrome/painful bladder syndrome: 2008 snapshot. Neurourol Urodyn 28(4):274–286. doi:10.1002/nau.20687

    PubMed  Article  Google Scholar 

  2. Clemens JQ, Link CL, Eggers PW, Kusek JW, Nyberg LM Jr, McKinlay JB, BACH Survey Investigators (2007) Prevalence of painful bladder symptoms and effect on quality of life in black, Hispanic and white men and women. J Urol 177(4):1390–1394. doi:10.1016/j.juro.2006.11.084

    PubMed  Article  Google Scholar 

  3. Berry SH, Elliott MN, Suttorp M, Bogart LM, Stoto MA, Eggers P, Nyberg L, Clemens JQ (2011) Prevalence of symptoms of bladder pain syndrome/interstitial cystitis among adult females in the United States. J Urol 186(2):540–544. doi:10.1016/j.juro.2011.03.132

    PubMed Central  PubMed  Article  Google Scholar 

  4. Hanno PM, Burks DA, Clemens JQ, Dmochowski RR, Erickson D, Fitzgerald MP, Forrest JB, Gordon B, Gray M, Mayer RD, Newman D, Nyberg L Jr, Payne CK, Wesselmann U, Faraday MM, Interstitial Cystitis Guidelines Panel of the American Urological Association Education and Research, Inc (2011) AUA guideline for the diagnosis and treatment of interstitial cystitis/bladder pain syndrome. J Urol 185(6):2162–2170. doi:10.1016/j.juro.2011.03.064

  5. Whitmore KE (1994) Self-care regimens for patients with interstitial cystitis. Urol Clin N Am 21(1):121–130

    CAS  Google Scholar 

  6. Nickel JC, Shoskes DA, Irvine-Bird K (2010) Prevalence and impact of bacteriuria and/or urinary tract infection in interstitial cystitis/painful bladder syndrome. Urology 76(4):799–803. doi:10.1016/j.urology.2010.03.065

    PubMed  Article  Google Scholar 

  7. Jeong HJ (2012) Effects of a short course of oral prednisolone in patients with bladder pain syndrome with fluctuating, worsening pain despite low-dose triple therapy. Int Neurourol J 16(4):175–180. doi:10.5213/inj.2012.16.4.175

    PubMed Central  PubMed  Article  Google Scholar 

  8. Sutcliffe S, Colditz GA, Pakpahan R, Bradley CS, Goodman MS, Andriole GL, Lai HH (2015) Changes in symptoms during urologic chronic pelvic pain syndrome symptom flares: findings from one site of the MAPP Research Network. Neurourol Urodyn 34(2):188–195. doi:10.1002/nau.22534

    PubMed  Article  Google Scholar 

  9. Sutcliffe S, Colditz GA, Goodman MS, Pakpahan R, Vetter J, Ness TJ, Andriole GL, Lai HH (2014) Urologic chronic pelvic pain syndrome symptom flares: characterization of the full spectrum of flares at two sites of the MAPP Research Network. BJU Int 114(6):916–925

    PubMed  Article  Google Scholar 

  10. Interstitial Cystitis Association Web survey. How do you define an IC flare? 2009. Available at: http://www.ichelp.org/Page.aspx?pid=525. Accessed February 17, 2011

  11. Webster DC, Brennan T (1995) Self-care strategies used for acute attack of interstitial cystitis. Urol Nurs 15(3):86–93

    CAS  PubMed  Google Scholar 

  12. Bassaly R, Downes K, Hart S (2011) Dietary consumption triggers in interstitial cystitis/bladder pain syndrome patients. Female Pelvic Med Reconstr Surg 17(1):36–39. doi:10.1097/SPV.0b013e3182044b5c

    PubMed  Article  Google Scholar 

  13. Koziol JA (1994) Epidemiology of interstitial cystitis. Urol Clin North Am 21(1):7–20

    CAS  PubMed  Google Scholar 

  14. Shorter B, Lesser M, Moldwin RM, Kushner L (2007) Effect of comestibles on symptoms of interstitial cystitis. J Urol 178(1):145–152. doi:10.1016/j.juro.2007.03.020

    PubMed  Article  Google Scholar 

  15. Bade JJ, Peeters JM, Mensink HJ (1997) Is the diet of patients with interstitial cystitis related to their disease? Eur Urol 32(2):179–183

    CAS  PubMed  Google Scholar 

  16. Landis JR, Williams DA, Lucia MS, Clauw DJ, Naliboff BD, Robinson NA, van Bokhoven A, Sutcliffe S, Schaeffer AJ, Rodriguez LV, Mayer EA, Lai HH, Krieger JN, Kreder KJ, Afari N, Andriole GL, Bradley CS, Griffith JW, Klumpp DJ, Hong BA, Lutgendorf SK, Buchwald D, Yang CC, Mackey S, Pontari MA, Hanno P, Kusek JW, Mullins C, Clemens JQ (2014) The MAPP research network: design, patient characterization and operations. BMC Urol 14(1):58. doi:10.1186/1471-2490-14-58

    PubMed Central  PubMed  Article  Google Scholar 

  17. O’Leary MP, Sant GR, Fowler FJ Jr, Whitmore KE, Spolarich-Kroll J (1997) The interstitial cystitis symptom index and problem index. Urology 49(5A Suppl):58–63

    PubMed  Article  Google Scholar 

  18. Clemens JQ, Calhoun EA, Litwin MS, McNaughton-Collins M, Kusek JW, Crowley EM, Landis JR (2009) Validation of a modified National Institutes of Health chronic prostatitis symptom index to assess genitourinary pain in both men and women. Urology 74(5):983–987. doi:10.1016/j.urology.2009.06.078, quiz 987 e981–e983

    PubMed Central  PubMed  Article  Google Scholar 

  19. Bernard HR (2006) Research methods in anthropology: qualitative and quantitative approaches. AltaMira Press, Oxford

    Google Scholar 

  20. Beckett MK, Elliott MN, Clemens JQ, Ewing B, Berry SH (2014) Consequences of interstitial cystitis/bladder pain symptoms on women’s work participation and income: results from a national household sample. J Urol 191(1):83–88. doi:10.1016/j.juro.2013.07.018

    PubMed Central  PubMed  Article  Google Scholar 

  21. Bogart LM, Suttorp MJ, Elliott MN, Clemens JQ, Berry SH (2011) Prevalence and correlates of sexual dysfunction among women with bladder pain syndrome/interstitial cystitis. Urology 77(3):576–580. doi:10.1016/j.urology.2010.10.016

    PubMed Central  PubMed  Article  Google Scholar 

  22. Slade D, Ratner V, Chalker R (1997) A collaborative approach to managing interstitial cystitis. Urology 49(5A Suppl):10–13

    CAS  PubMed  Article  Google Scholar 

  23. Simon LJ, Landis JR, Erickson DR, Nyberg LM (1997) The Interstitial Cystitis Data Base Study: concepts and preliminary baseline descriptive statistics. Urology 49(5A Suppl):64–75

    CAS  PubMed  Article  Google Scholar 

  24. Held PJ, Hanno PM, Wein AJ, Pauly MV, Cahn MA (1990) Epidemiology of interstitial cystitis. In: Hanno PM,Staskin D, Krane RJ et al (eds) Interstitial cystitis. Springer, New York, pp 29–48

    Chapter  Google Scholar 

  25. Clemens JQ, Brown SO, Calhoun EA (2008) Mental health diagnoses in patients with interstitial cystitis/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome: a case/control study. J Urol 180(4):1378–1382. doi:10.1016/j.juro.2008.06.032

    PubMed Central  PubMed  Article  Google Scholar 

  26. Hatchett L, Fitzgerald MP, Potts J, Winder A, Mickelberg K, Barrell T, Kusek JW, Urologic Pelvic Pain Collaborative Research Network (2009) Life impact of urologic pain syndromes. J Health Psychol 14(6):741–750. doi:10.1177/1359105309338973

  27. Webster DC, Brennan T (1995) Use and effectiveness of sexual self-care strategies for interstitial cystitis. Urol Nurs 15(1):14–22

    CAS  PubMed  Google Scholar 

  28. Webster D (1990) Comparing patients’ and nurses’ views of interstitial cystitis: a pilot study. Urol Nurs 10(3):10–15

    CAS  PubMed  Google Scholar 

  29. Payne C, Allee T (2009) Goal achievement provides new insights into interstitial cystitis/painful bladder syndrome symptoms and outcomes. Neurourol Urodyn 28(1):13–17. doi:10.1002/nau.20616

    PubMed  Article  Google Scholar 

  30. Michael YL, Kawachi I, Stampfer MJ, Colditz GA, Curhan GC (2000) Quality of life among women with interstitial cystitis. J Urol 164(2):423–427

    CAS  PubMed  Article  Google Scholar 

  31. Rothrock NE, Lutgendorf SK, Hoffman A, Kreder KJ (2002) Depressive symptoms and quality of life in patients with interstitial cystitis. J Urol 167(4):1763–1767

    PubMed  Article  Google Scholar 

  32. Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J (2010) Psychosocial phenotyping in women with interstitial cystitis/painful bladder syndrome: a case control study. J Urol 183(1):167–172. doi:10.1016/j.juro.2009.08.133

    PubMed  Article  Google Scholar 

  33. Konkle KS, Berry SH, Elliott MN, Hilton L, Suttorp MJ, Clauw DJ, Clemens JQ (2012) Comparison of an interstitial cystitis/bladder pain syndrome clinical cohort with symptomatic community women from the RAND Interstitial Cystitis Epidemiology study. J Urol 187(2):508–512. doi:10.1016/j.juro.2011.10.040

    PubMed Central  PubMed  Article  Google Scholar 

Download references

Acknowledgements

We thank the research coordinators at each focus group site (Mary Eno, Vivien Gardner, Megan Halvorson, Nuwanthi Heendeniya, Ginny Leone, Ratna Pakpahan, and Suzanne Smith) for recruiting participants and coordinating the focus groups; Sam Silver for re-coding the focus group transcripts; and, most importantly, the participants for their participation.

Funding

This study was funded by MAPP Research Network grants NIH DK082370, DK082344, DK082345, DK082315, and DK082316.

Conflicts of interest

None of the authors has any financial arrangements that might represent a conflict of interest with the present study. KJK is a consultant for Symptelligence, Medtronic, and Tengion (not related to the present study).

Author information

Authors and Affiliations

  1. Division of Public Health Sciences and the Alvin J. Siteman Cancer Center, Department of Surgery, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8100, St. Louis, MO, 63110, USA

    Siobhan Sutcliffe & Aimee S. James

  2. Department of Obstetrics and Gynecology, College of Medicine, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley

  3. Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley

  4. Department of Urology, College of Medicine, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley & Karl J. Kreder

  5. Division of Neurology and Pelvic Reconstructive Surgery, Department of Urology, The University of Michigan Medical Center, Ann Arbor, MI, USA

    James Quentin Clemens & Katy S. Konkle

  6. Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA

    Hing Hung Henry Lai

  7. Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA

    Sean C. Mackey

  8. Department of Neuroscience and Neurology, Stanford University School of Medicine, Palo Alto, CA, USA

    Sean C. Mackey

  9. Center for Neurobiology of Stress, David Geffen School of Medicine, University of California - Los Angeles, Los Angeles, CA, USA

    Cody P. Ashe-McNalley

  10. Institute of Urology, University of Southern California, Beverly Hills, CA, USA

    Larissa V. Rodriguez

  11. Department of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

    Edward Barrell, Xiaoling Hou & Nancy A. Robinson

  12. National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA

    Chris Mullins

  13. Rand Corporation, Santa Monica, CA, USA

    Sandra H. Berry

Authors
  1. Siobhan Sutcliffe
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Catherine S. Bradley
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. James Quentin Clemens
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Aimee S. James
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Katy S. Konkle
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Karl J. Kreder
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Hing Hung Henry Lai
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Sean C. Mackey
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Cody P. Ashe-McNalley
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Larissa V. Rodriguez
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Edward Barrell
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Xiaoling Hou
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Nancy A. Robinson
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Chris Mullins
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Sandra H. Berry
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Siobhan Sutcliffe.

Appendix

Appendix

An example of the moderator’s guide is shown in Table 7

Table 7 UCPPS symptom variability focus group discussion outline, MAPP Research Network
Full size table

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Sutcliffe, S., Bradley, C.S., Clemens, J.Q. et al. Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network. Int Urogynecol J 26, 1047–1060 (2015). https://doi.org/10.1007/s00192-015-2652-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00192-015-2652-6

Keywords

  • Urological chronic pelvic pain syndrome
  • Interstitial cystitis
  • Bladder pain syndrome
  • Symptom exacerbation
  • Flare
  • Focus group