Patient professional reference
Synonyms: interstitial cystitis, painful bladder syndrome, bladder pain syndrome, hypersensitive bladder syndrome, trigonitis
The common symptoms of interstitial cystitis/painful bladder syndrome (IC/PBS) include urinary urgency, frequency, nocturia and suprapubic or pelvic pain without any known aetiological factor. The term 'interstitial cystitis' is usually reserved for patients with typical cystoscopic features.
The European Association of Urology (EAU) guidelines refer to this condition as bladder pain syndrome (BPS). This condition is the occurrence of persistent or recurrent pain perceived in the urinary bladder region, accompanied by at least one other symptom, such as pain worsening with bladder filling and daytime and/or night-time urinary frequency. There is no proven infection or other obvious local pathology. It is often associated with negative cognitive, behavioural, sexual or emotional consequences, as well as with symptoms suggestive of lower urinary tract and sexual dysfunction.
- The exact prevalence is unknown because of misdiagnosis and also underdiagnosis. Although once thought to be rare, IC/PBS is now believed to have a much higher prevalence and the incidence is increasing globally.
- This condition primarily affects women.
- However, many women are often reluctant to seek treatment.
- More recently, the prevalence of the condition has increased to at least 2% among females, due to broader and more inclusive diagnostic criteria.
- The average age at diagnosis is 40 years.
- However, around 35% of patients actually have symptoms that started in childhood.
- This condition can occur in children.
- This condition has a multi-factorial aetiology including epithelial dysfunction, subclinical infection, mast cell and vascular abnormalities, neurogenic inflammation, autoimmune phenomena and up-regulation of sensory nerves in the bladder.
- It is thought that there is injury or dysfunction of the glycosaminoglycan layer that covers the urothelium. This injury can be caused by bacterial cystitis, childbirth, pelvic surgery or urological instrumentation.
- These factors provoke sensory nerve activation, neurogenic inflammation, pain and fibrosis.
- Changes in the somatosensory grey matter occur which may have an important role in pain sensitivity as well as affective and sensory aspects of interstitial cystitis.
Symptoms vary widely in severity and nature but the onset of symptoms is often acute and may be sudden.
- Recurrent symptoms similar to urinary tract infections (urgency, frequency, dysuria), lower abdominal pain, pressure in the bladder and/or pelvis, and dyspareunia.
- Characteristics of the pain include:
- Pain, pressure or discomfort perceived to be related to the bladder, increasing with increasing bladder content.
- Located suprapubically, sometimes radiating to the groins, vagina, rectum or sacrum.
- Relieved by voiding but soon returns.
- Aggravated by food or drink.
- In women the symptoms are often worse during menstruation.
- There is wide variation in symptoms between individuals and in any one individual over time.
- Examination may be normal apart from suprapubic tenderness.
- The severity of the symptoms often bears little correlation with the clinical findings.
- Trials of antibiotic treatment do not cure the condition.
- An association has been reported between BPS and non-bladder syndromes such as fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, vulvodynia, depression, panic disorders, migraine, sicca syndrome, temporomandibular joint disorder, asthma and systemic lupus erythematosus.
Other causes of urinary frequency, urgency of micturition and pelvic pain, including:
- Infection or other inflammatory conditions - eg, recurrent urinary tract infection, urethral diverticulum, infected Bartholin's gland, tuberculous, bacterial or viral vaginosis, schistosomiasis.
- Gynaecological - eg, pelvic malignancy, uterine fibroids, endometriosis, mittelschmerz (ovulation pain), pelvic inflammatory disease, genital atrophy.
- Urological - eg, bladder cancer, radiation cystitis, overflow incontinence, chronic pelvic pain syndrome, bladder outlet obstruction, urolithiasis, urethritis, chronic prostatitis, prostate cancer.
- Neurological - eg, detrusor overactivity, Parkinson's disease, lumbosacral disc disease, spinal stenosis, spinal tumour, multiple sclerosis, cerebrovascular disease.
- Others include inflammatory bowel disease, gastrointestinal neoplasm, diverticulitis and adhesions from previous surgery.
The diagnosis and management of this syndrome may be difficult in some patients. The diagnosis of interstitial cystitis is usually based on a thorough assessment and exclusion of other causes.
- Urinalysis and midstream urine for urine cultures: rule out urinary tract infection, including tuberculosis.
- Cervical swabs for herpes and chlamydia.
- Urodynamic studies: there are no specific findings but pain with bladder filling that reproduces the symptoms is very supportive of a diagnosis of IC/PBS.
- Most cases need cystoscopy to exclude bladder cancer. Hunner's ulcers (reddened mucosal areas often associated with small vessels radiating towards a central scar, sometimes covered by a small clot or fibrin deposit) may be seen in 10-50%.
- Men should have urethral swabs and prostatic secretion cultures (for chronic prostatitis).
- Investigations such as cystoscopy, hydro-distension and biopsy are often used for diagnosing IC/PBS in paediatric patients, as eliciting clinical symptoms can be difficult and unreliable.
- There are few clinical urogynaecological conditions that cause greater frustration than IC/PBS. This is due to its chronicity, serious impairment of quality of life, diagnostic difficulties and unsatisfactory treatment.
- Management is often difficult and only partially effective. Early diagnosis and management are important.
- A comprehensive assessment of patients is required to identify treatment options that are tailored to the needs of individual patients.
- Multimodal behavioural, physical and psychological techniques should always be considered alongside oral or invasive treatments of IC/BPS.
- Treatment is mainly symptomatic and supportive.
- Oral or intravesical therapies are the mainstay of treatment whilst surgical procedures are reserved for refractory cases.
- This condition usually warrants a multidisciplinary approach for optimum outcome.
- The following are important to consider regarding managing these patients:
- Self-awareness of the condition.
- Immediate urine culture test.
- Specifying the location of pain.
- The type of urinary incontinence.
- Helpful dietary control.
- Complementary and alternative medicine may be considered.
- Finding an expert early is ideal but not always possible.
- Behavioural therapy: biofeedback, pelvic floor exercises and bladder training programmes may be effective.
- Diet: certain foods and drinks such as alcohol, tomatoes, spices, chocolate, caffeinated and citrus drinks and acidic foods may contribute to bladder irritation and inflammation. Many patients find benefit in keeping a food diary to try to assess which foods exacerbate and worsen their symptoms.
- Some people report a reduction in symptoms following distension of the bladder during diagnostic cystoscopy. There is belief that distending the bladder causes the nerve cells to be stretched and thus less sensitive for a time.
- Transcutaneous electrical nerve stimulation (TENS) can help in conjunction with other therapies.
- Analgesics should be used preferably in collaboration with a pain clinic.
- There is no good evidence for corticosteroids, duloxetine or prostaglandins and they are not recommended for long-term treatment.
- Cimetidine can be considered for some patients as a valid oral option before invasive treatments.
- Amitriptyline may be beneficial for some patients.
- Offer oral pentosan-polysulfate sodium, although it is not currently licensed in the UK.
- Oxybutynin or gabapentin might be considered for some patients.
- Oral treatment with ciclosporin has been shown to be a beneficial therapeutic strategy for some patients with IC/PBS. However, adverse effects are significant and should be carefully considered.
- It is recommended that intravesical lidocaine plus sodium bicarbonate can be administered prior to more invasive methods.
- Intravesical pentosan-polysulfate sodium or intravesical heparin are sometimes used.
- Intravesical hyaluronic acid or intravesical chondroitin sulfate is also sometimes used and can be considered before more invasive measures.
- However, intravesical therapy with BCG is not recommended for these patients, nor is intravesical therapy with clorpactin.
- Bladder distension is also not recommended as a treatment.
Botulinum toxin type A is sometimes effective in managing this condition. However, it is not consistently effective in all patients.
All ablative organ surgery should be the last resort for experienced and knowledgeable surgeons only.
Major surgery (subtotal cystectomy and bladder augmentation or supravesical urinary diversion with intact bladder) is associated with good symptom relief in strictly selected patients with disabling IC/PBS, where conservative treatment has failed.
When all other treatment options fail to relieve disabling symptoms, surgical removal of the diseased bladder is the ultimate option, for which three major techniques are common: supratrigonal (trigone-sparing) cystectomy, subtrigonal cystectomy and radical cystectomy including excision of the urethra.
- The prognosis is very variable. The condition can:
- Have complete resolution of symptoms within months.
- Follow a waxing and waning course.
- Be completely asymptomatic with intermittent flares.
- Follow a chronically progressive course of increasing symptoms over several years.
- Some people do recover spontaneously, but individuals may have the condition for many years and there may be spontaneous resolution only to return days or months later.
- Short-term (up to one year) cure rates range from 50% to 75% for non-invasive or minimally invasive therapies but repeat administration of a therapeutic agent is required. Although definitive surgical intervention is associated with greater long-term cure rates (≥80%), significant short-term and long-term adverse effects occur more frequently.
- Interstitial cystitis can have a significant and even profound effect on quality of life.
Further reading and references
Management of Bladder Pain Syndrome; Royal College of Obstetricians and Gynaecologists (2016)
Interstitial Cystitis Diet; Confidence Choices
MacMullen NJ, Dulski LA, Martin PB, et al; Nursing Care of Women With Interstitial Cystitis/Painful Bladder Syndrome. Nurs Womens Health. 2016 Apr-May20(2):168-80. doi: 10.1016/j.nwh.2016.01.006.
Konkle KS, Berry SH, Elliott MN, et al; Comparison of an interstitial cystitis/bladder pain syndrome clinical cohort with symptomatic community women from the RAND Interstitial Cystitis Epidemiology study. J Urol. 2012 Feb187(2):508-12. doi: 10.1016/j.juro.2011.10.040. Epub 2011 Dec 15.
Wang Z, Zhang L; Treatment effect of cyclosporine A in patients with painful bladder syndrome/interstitial cystitis: A systematic review. Exp Ther Med. 2016 Jul12(1):445-450. Epub 2016 Apr 27.
Hanno P, Lin A, Nordling J, et al; Bladder Pain Syndrome Committee of the International Consultation on Incontinence. Neurourol Urodyn. 201029(1):191-8. doi: 10.1002/nau.20847.
Flores-Carreras O, Gonzalez-Ruiz MI, Martinez-Espinoza CJ, et al; Interstitial cystitis/painful bladder syndrome: diagnostic evaluation and therapeutic response in a private urogynecology unit. Transl Androl Urol. 2015 Dec4(6):620-3. doi: 10.3978/j.issn.2223-4683.2015.10.11.
Kairys AE, Schmidt-Wilcke T, Puiu T, et al; Increased brain gray matter in the primary somatosensory cortex is associated with increased pain and mood disturbance in patients with interstitial cystitis/painful bladder syndrome. J Urol. 2015 Jan193(1):131-7. doi: 10.1016/j.juro.2014.08.042. Epub 2014 Aug 14.
Guidelines on Chronic Pelvic Pain; European Association of Urology (2015)
Peters KM, Killinger KA, Ibrahim IA; Childhood symptoms and events in women with interstitial cystitis/painful bladder syndrome. Urology. 2009 Feb73(2):258-62. doi: 10.1016/j.urology.2008.09.014. Epub 2008 Nov 25.
Lamarre NS, Bjorling DE; Treatment of painful bladder syndrome/interstitial cystitis with botulinum toxin A: why isn't it effective in all patients? Transl Androl Urol. 2015 Oct4(5):543-54. doi: 10.3978/j.issn.2223-4683.2015.10.02.
Chung KJ, Han AN, Kim KH; Recommendations to the primary care practitioners and the patients for managing pelvic pain, especially in painful bladder syndrome for early and better prognosis. J Exerc Rehabil. 2015 Oct 3011(5):251-4. doi: 10.12965/jer.150226. eCollection 2015 Oct.
Interstitial cystitis: oral pentosan polysulfate sodium - Key points from the evidence; NICE advice, April 2015
Han XM, Wu XH, Li B, et al; The effects of intravesical therapy with hyaluronic acid for painful bladder syndrome: Preliminary Chinese experience and systematic review. Taiwan J Obstet Gynecol. 2015 Jun54(3):240-7. doi: 10.1016/j.tjog.2014.09.007.
Andersen AV, Granlund P, Schultz A, et al; Long-term experience with surgical treatment of selected patients with bladder pain syndrome/interstitial cystitis. Scand J Urol Nephrol. 2012 Aug46(4):284-9. doi: 10.3109/00365599.2012.669789. Epub 2012 Mar 27.
Davis NF, Brady CM, Creagh T; Interstitial cystitis/painful bladder syndrome: epidemiology, pathophysiology and evidence-based treatment options. Eur J Obstet Gynecol Reprod Biol. 2014 Apr175C:30-37. doi: 10.1016/j.ejogrb.2013.12.041. Epub 2014 Jan 13.
I have been off for 5 much now. I just wanted to write this post as encouragement for everyone going through withdrawal. It is awful and way worse for me than any of the s/e of the drug itself but.......Adkin67890
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.