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Interstitial cystitis – chronic, common, and sometimes complicated to treat


Carole Cranford, age 52, comes to the outpatient clinic complaining of pain and pressure in the bladder area, which she rates as a 10 on a 1-to-10 scale, as well as urinary urgency and frequency. She says she has been voiding 20 or more times per day for the past year. She reports pain during and after sexual intercourse, which at times has deterred her from having sex. The pain increases when her bladder is full, isn’t relieved when she voids, and isn’t cyclic or timed with her menstrual cycle.

Which condition would you suspect as the cause of Ms. Cranford’s symptoms? Most likely, you’d place interstitial cystitis (IC) at the top of your list. Also called painful bladder syndrome, IC is marked by pelvic and bladder pain of varying severity and lasting for an extended time, along with urinary frequency. Many patients with IC have pain on bladder filling and urination, as well as with sexual intercourse. They void frequently to decrease pain by eliminating urine in the bladder. Pain commonly occurs in the general pelvic region, inguinal area, inside of the thighs, in the labia or vaginal lips, deep inside the vagina, urethra, clitoris, and in the perineum.

The cause of IC remains unknown. Diagnosis and treatment can be controversial, and for many patients, the treatment is complicated. New research indicates IC is more prevalent than originally thought. According to the RAND IC Epidemiology (RICE) Study, the largest IC epidemiology study undertaken, about 3 to 8 million women in the United States (roughly 3% to 6% of all women) may have IC. Findings from the Boston Area Community Health (BACH) survey show that roughly 1 to 4 million men have IC. However, that number is probably lower than the true rate because IC in men may be mistaken for another disorder, such as chronic prostatitis or chronic pelvic pain syndrome. IC can start in childhood, although studies haven’t been done to establish its prevalence in this age group.


Several pathogenic mechanisms have been proposed to explain IC. According to one theory, injury to the bladder’s inner protective mucous lining causes leakage of urinary chemicals (such as potassium) into surrounding tissues, resulting in pain and bladder irritation. Many studies show that IC patients have bladder-lining abnormalities, which may appear in biopsies. Experts don’t know whether these abnormalities are primary or arise secondary to another (unrecognized) condition.

A second theory involves the glycosaminoglycan (GAG) layer, which normally coats the surface lining of the bladder, making it impermeable to solutes. According to this theory, defects in the GAG layer may allow urinary irritants to penetrate and activate underlying nerve and muscle tissues. This process may promote further tissue damage, pain, and hypersensitivity. Bladder mast cells also may play a role in proliferation of ongoing bladder damage after the initial injury.

A third theory involves antiproliferative factor (APF)—a unique protein found in urine in the bladder of IC patients. This protein may prevent growth of healthy new bladder cells and prevent bladder cells from repairing the damaged bladder lining.

Assessment and diagnosis

IC diagnosis rests on characteristic signs and symptoms and exclusion of other possible causes. (See Conditions that may mimic IC by clicking on the PDF icon above.) IC always causes pain associated with bladder filling or emptying, usually accompanied by urinary frequency, urgency, and nocturia. The pain, which originates from the bladder, usually is felt suprapubically. Urinary frequency occurs because voiding partially or completely relieves the pain caused by bladder filling; thus, patients prefer to maintain low bladder volumes.

IC patients commonly have several diagnoses, such as irritable bowel syndrome, endometriosis, vulvodynia, migraine, fibromyalgia, dyspareunia, increased pain during the luteal phase of the menstrual cycle, or dysmenorrhea. When one of these comorbid conditions flares or causes symptoms, the patient also may have a flare or exacerbation of IC.

Many clinicians use the Pelvic Pain, Urgency, and Frequency (PUF) questionnaire as a screening and diagnostic tool. A score of 10 or greater suggests IC. Patients may describe the pain as ranging from a mild burning sensation to severe and debilitating. They may report sitting on the toilet for hours at a time to let urine dribble from their bladders more or less continuously, to keep the bladder as empty as possible and thus minimize pain.

Potassium sensitivity test

Although the American Urological Association’s preliminary IC Clinical Guidelines don’t recommend the potassium sensitivity test to help
diagnose IC, many clinicians find it helpful. In this procedure, 40 mL of sterile water is instilled into the bladder via sterile technique, and the patient is asked if she has bladder pain. The bladder is drained and 40 mL of 0.4% potassium chloride is instilled. Increased pain on potassium instillation indicates bladder hypersensitivity and suggests IC.

Cystoscopy with hydrodistention

This test may be done in the office or in the operating room under general anesthesia. With the patient’s bladder filled to capacity with normal saline solution, the practitioner examines the epithelium with a telescopic fiber inserted through the urethra to the bladder. Glomerulations (tiny hemorrhages—the telltale signs of IC) appear only while the bladder is distended. These hemorrhages are found in 95% of IC patients.

Cystoscopy also may reveal bladder calculi, which can cause symptoms similar to those of IC. Less frequently, cystoscopy reveals epithelial ulcerations (Hunner’s ulcers), lesions, and scars. Hunner’s ulcers indicate IC, though hydrodistention isn’t needed to see them.

Tissue biopsy

A biopsy can distinguish between epithelial ulcers and cancerous lesions, as well as detect mast cells in the bladder, which sometimes are abundant in IC. But some IC sufferers lack epithelial glomerulations or ulcers.


Treatment aims to decrease or eliminate bladder and urethral discomfort and relieve urinary frequency and urgency. Modalities include drugs, bladder instillation, various procedures, and dietary modification.

Pharmacologic options

Pentosan polysulfate (Elmiron)—the only oral drug approved to treat IC—is given as 100 mg three times daily to reconstitute the deficient GAG layer over the bladder lining. Other pharmacologic options include:

  • antispasmodics
  • urinary analgesics (such as phenazopyridine)
  • anticholinergics (such as oxybutynin, tolterodine, darifenacin, and trospium chloride)
  • Prosed DS—a combination drug containing methenamine, salicylate, methylene blue, benzoic acid atropine, and hyoscyamine
    • past medical history: irritable bowel syndrome, polycystic ovarian syndromeUrelle—a combination drug containing hyoscyamine, methylene blue, methenamine, phenyl salicylate, and sodium biphosphate.Because mast cells play a critical role in development or maintenance of IC symptoms, drugs that act on mast cells (namely, antihistamines, such as hydroxyzine) may be given. Leukotrine receptor antagonists (such as montelukast sodium [Singulair]) also may be prescribed because leukotrines may play a role in proinflammatory mediators in IC.Drugs used to treat other pain syndromes, including amitriptyline and gabapentin, commonly are used to reduce pain in IC patients. Severe pain warrants referral to a pain management specialist, who typically prescribes an opioid.

      Bladder instillation

      Bladder instillation may be done to repair and rebuild the damaged uterine lining and ease IC symptoms. In 1997, the Food and Drug Administration (FDA) approved intravesical instillation of dimethylsulfoxide (DSMO) for IC patients. This treatment is thought to have anti-inflammatory and analgesic effects and to relax smooth muscles and inhibit mast cells. (However, DMSO is no longer the first choice for instillation.)

      In many cases, a “cocktail” may be distilled—containing, for example, DSMO, lidocaine, dexamethasone, and heparin or 8.4% sodium bicarbonate, lidocaine, dexamethasone, and heparin. The solution is instilled by catheter using sterile technique after the patient’s bladder has been drained. (See Nurse’s role in bladder instillation by clicking on the PDF icon above.)

      Procedural options

      Therapeutic cystoscopy with hydro­distention may be performed under anesthesia. Some patients repeat the procedure occasionally to alleviate pain and pressure.

      In implanted sacral neuromodulation, a lead is implanted along a sacral nerve root (usually the S3 nerve root) and attached to an implanted pulse generator. The device generates low-amplitude stimulation that decreases urinary urgency. The procedure is FDA-approved to treat urinary urgency and frequency, although not specifically IC.

      Percutaneous posterior tibial nerve stimulation is a noninvasive and less costly alternative to sacral neuromodulation. An acupuncture needle is placed about three fingerbreadths from the cephalic head of the ankle at a 60-degree angle. The needle is attached to a stimulation unit, which stimulates the tibia nerve innervating the bladder, thus decreasing bladder spasm. The procedure should be done once a week for 12 visits. One study found that eight (44%) of 18 patients with IC experienced benefits after twice-weekly tibial nerve stimulation.

      Physical therapy with electrical stimulation may be used for patients with dyspareunia or levator spasm. To improve efficacy, it may be done in conjunction with bladder instillation. In this technique, patients perform monitored Kegel exercises in conjunction with electrical stimulation for approximately eight sessions to strength­en pelvic-floor muscles. This treatment targets the levator ani muscle. Similar to neuromodulation, electrical stimulation remodels the neuronal reflex loop by stimulating afferent fibers of the pudendal nerve. By inhibiting bladder reflex contraction and using high-intensity stimulus for short durations, the treatment eases bladder spasms or calms the detrusor muscle.

      Myofacial release therapy may be recommended to ease tender points, trigger points, connective tissue restrictions, and muscular abnormalities or levator spasms. In a randomized trial, 50% of patients reported moderate or marked symptom improvement after a course of targeted treatments, compared to only 7% of controls who received global massage therapy.

      While not approved for IC, intra­vesical botulinum toxin has undergone clinical trials in IC patients. The theory behind its use is that botulinum modulates sensory neurotransmitters in the bladder to decrease bladder pain. Unfortunately, the incidence of chronic urinary retention, which may require self-catherization (a painful procedure), is unacceptably high with this treatment.

      Dietary modifications

      Advise patients to avoid all foods and beverages that can irritate the bladder and cause discomfort. (See Foods that may irritate the bladder by clicking on the PDF icon above.)

      Case study outcome

      In the outpatient clinic, you obtain Carole Cranford’s history and perform a physical exam. Her history reveals the following:

  • past surgical history: no gynecologic procedures
  • medications: none
  • allergies: none
  • obstetric/gynecologic history: three vaginal deliveries; largest birth weight 7 lb, 3 oz with no complications
  • voiding history: every 15 to 20 minutes during the day and about every hour during the night. Denies urinary incontinence.On physical examination, you find Ms. Cranford in no apparent distress. Her lungs are clear; her heart rate is regular with no murmur. Her extremities show no cyanosis, clubbing, or edema. Her abdomen is soft and nontender. The external genitalia are normal. No vaginal discharge is present; the vagina is well supported, with levator squeeze grade 2. You detect no cervical lesions or cervical motion tenderness. The uterus is small, anteverted, and nontender with no adnexal masses. On palpation, the bladder and urethra are tender; urethral exudate and diverticula are absent. You note suprapubic tenderness on palpation. Anal wink and bulbacavernosis are present.The physician orders diagnostic tests, which reveal the following:
    • urinalysis and culture and sensitivity testing: negative
  • PUF questionnaire score: 24
  • transvaginal ultrasound: negative
  • cystoscopy with hydrodistention during the filling phase: petechial lesions in all four quadrants of the bladder mucosa.Based on these findings, the phy­sician diagnoses IC and recommends bladder instillation for 8 to 12 treatments using a mixture of 50 mL sodi­um bicarbonate, 20,000 units heparin, 4 mg dexamethasone, and 20 mL lidocaine. Ms. Cranford also is prescribed:
    • Prosed DS for bladder and urethral discomfort two to three times daily as needed and 30 minutes before bladder instillations
  • pentosan polysulfate 100 mg three times daily
  • amitriptyline 25 mg at night
  • hydroxyzine 25 mg at night
  • dietary and behavior modification to eliminate foods and beverages that may irritate her bladder.After 12 bladder instillations, 8 weeks of pelvic-floor physiotherapy with electrical stimulation, and oral medication and dietary modification, Ms. Cranford reports that her urinary frequency is now every 3 hours and her pain has decreased to 1 on a 1-to-10 scale.

    The nurse’s role

    If your patient’s receiving drugs to treat IC, provide teaching about possible adverse effects. Tell her that certain activities, such as sexual intercourse, can aggravate IC symptoms. If appropriate, suggest physical therapy with electrical stimulation to relax the pelvic muscles. Inform her that other activities that can cause flares include sitting for long periods and exercises that increase intrabdominal pressure.

    Know that living with the pain of IC can cause problems with family members and friends, at work or school, and with general day-to-day living.

    Stress, anxiety, anger, depression, and frustration may worsen IC. As with any chronic pain disorder, psychosocial support is essential to treatment. Provide support to help the patient deal with these problems as well as the disorder itself.

    Professional counseling can help, too. A psychologist, psychiatrist, or social worker can explore the patient’s emotional responses to living with chronic pain, treatment successes or failures, and difficulties with personal relationships. Group psychotherapy allows patients to compare their experiences with IC, overcome the tendency to withdraw and become isolated in pain, and support each other’s attempts at more effective management. As appropriate, refer the patient to a local patient support group. (See Resources for IC patients by clicking on the PDF icon above.)

    Finally, depression is common in people with chronic pain and can reduce the chance for successful treatment. If needed, refer the patient for evaluation and treatment of depression.

    As Ms. Cranford’s case shows, patients can learn to manage IC and control pain—but they need plenty of education and psycho-­social support. Learn as much as you can about the disorder so you can provide information and support. Listen empathetically as they describe how IC has affected their lives so you can help them cope with this painful condition.

    Selected references

    Berry SH, Stoto MA, Elliott M, Suttorp M, Bogart L, Eggers P, Nyberg L, Clemens JQ. Prevalence of symptoms of interstitial cystitis/painful bladder syndrome among adult females in the U.S. Poster presented at 2009 American Urological Association’s annual meeting. Accessed October 22, 2010.

    Dimitrakov J, Kroenke K, Steers WD et al. Pharmacological management of painful bladder syndrome/interstitial cystitis: a systematic review. Arch Intern Med. 2007;167:1922. Accessed September 20, 2010.

    Halls SA, Link CL, Pulliam SJ et al. The relationship of common medical conditions and medications use with symptoms of painful bladder syndrome: results from the Boston area community health survey. J Urol. 2008;180:593. Accessed September 20, 2010.

    Hsieh CH, Chang ST, Hsieh CJ et al. Treatment of cystitis with hydrodistention and bladder training. Int Urogynecol J Pelvic Floor Dysfunct. 2008;19(10):1379-84. Accessed September 20, 2010.

    Parsons CL. The role of the urinary epithelium in the pathogenesis of interstitial cystitis/prostitis/urethritis. Urology. 2007;69:S9.

    Peters KM, Feber KM, Bennett RC. A prospective single-blind, randomized crossover trial of sacral vs. pudendal nerve stimulation from interstitial cystitis. BJU Int. 2007;100:835.

    Cherrilyn F. Richmond is a women’s health nurse practitioner in the Urogynecology and Reconstructive Pelvic Surgery Department at the Yale School of Medicine in New Haven, Connecticut. The planners and authors of this continuing nursing education activity have no other financial rela­tion­ships with any commercial companies pertaining to this activity.


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