Patient information: Painful bladder syndrome and interstitial cystitis

Patient information: Painful bladder syndrome and interstitial cystitis

Author
Mary P Fitzgerald, MD
Section Editor
Linda Brubaker, MD, FACS, FACOG
Deputy Editor
Leah K Moynihan, RNC, MSN
Sandy J Falk, MD



Last literature review version 16.2: May 2008 | This topic last updated: July 12, 2007 (More)


INTRODUCTION — Painful bladder syndrome/interstitial cystitis (PBS/IC) is a group of disorders with symptoms of mild to severe bladder pain and an urgent and/or frequent need to urinate. The disorder can affect women and men, but is more common in women. It can be difficult to diagnose and treat because the underlying cause is not well understood.

The symptoms and diagnosis of PBS/IC will be discussed here. Treatment of this disorder is reviewed separately. (See "Patient information: Treatment of painful bladder syndrome and interstitial cystitis").


DEFINITION — The definitions of painful bladder syndrome and interstitial cystitis have evolved over the years, and will probably continue to change as the cause is better understood.

Painful bladder syndrome — PBS is defined as a group of symptoms that include bladder pain and a frequent and/or urgent need to urinate during the day and/or night.

Interstitial cystitis — IC is the diagnosis used to describe people who have symptoms of PBS as well as changes in the bladder lining (seen during cystoscopy, see "Cystoscopy" below).

It is difficult to know for sure how many people are affected by PBS/IC; estimates range from 0.01 to 11 percent of women and 0.04 to 5 percent of men.

CAUSES — Little is known about the cause of PBS/IC. Many studies have shown that patients with IC have abnormalities in the lining of the bladder. However, it is not known if these bladder abnormalities are the cause of symptoms or develop as a result of some unknown underlying disorder that also causes painful bladder symptoms.

It is likely that the nerves in the bladder become highly sensitive to pain and pressure as PBS/IC develops. Nerves outside the bladder, including nerves of the abdomen, pelvis, and hips, and legs, may also become more sensitive.

One or more events may lead to the symptoms of PBS/IC, including:

Urinary tract infection
• An episode of vaginitis or prostatitis (eg, a yeast infection of the vagina or a bacterial infection of the prostate)
• Bladder, pelvic, back or other type of surgery
• Trauma (eg, fall onto the tailbone [coccyx] or car accident)

However, in many people, there is no clear explanation for why or how the symptoms of PBS/IC first began.


SYMPTOMS — The symptoms of PBS/IC can vary from one person to another and from time to time for each person. All patients with PBS/IC have bladder pain that is relieved at least partially by urinating. Symptoms usually include a frequent and urgent need to urinate during the day and/or night. Most, although not all, people with PBS/IC do not have urinary leakage (incontinence). Most people describe pain in the suprapubic area (in the lower abdomen, above the pubic bone) or urethral area (show figure 1). Some people describe one-sided lower abdominal pain or low back pain. The severity of pain ranges from mild burning to severe and debilitating pelvic pain.

Most people describe symptoms that begin gradually, with worsening discomfort, urgency and frequency over a period of months. A smaller subset of patients describes symptoms that are severe from the beginning. When symptoms of PBS/IC begin suddenly, some patients are able to name the exact date on which symptoms began (see "Causes" above).

Some people have chronic pelvic pain that is distinct from bladder pain, sometimes with other pain symptoms. Some people have several pain-related diagnoses, such as irritable bowel syndrome, painful menstrual periods, endometriosis, vulvar pain (vulvodynia), or fibromyalgia. PBS/IC symptoms are sometimes at their worst during times when other pain symptoms are also at their worst. (See "Patient information: Irritable bowel syndrome" and see "Patient information: Endometriosis" and see "Patient information: Fibromyalgia").

Symptoms may vary from one day to the next. Worsening of PBS/IC symptoms may occur after consuming certain foods or drinks (eg, strawberries, oranges, beer, coffee), or during the luteal phase of the menstrual cycle (14 to 28 days after the first day of the last period), during stressful times, or after activities such as exercise, sexual intercourse, or being seated for long periods of time (eg, during a plane trip).

A person with severe disease may have to urinate several times per hour, which can seriously disrupt daily activities and sleep. As a result of these symptoms, home and work life are often disrupted, interest in sex may be minimal, and difficulty coping with chronic pain and fatigue can occur. In surveys, 50 percent of patients reported being unable to work full-time, 75 percent described pain with intercourse, 70 percent reported sleep disturbance, and 90 percent reported that PBS/IC affected their daily activities [1] .

EVALUATION — The diagnosis of PBS/IC is based upon a person's symptoms and examination. A careful medical history, physical examination, and sometimes laboratory testing are needed to confirm the diagnosis and also to be sure that another condition (eg, bladder infection or kidney stone) is not the cause of symptoms. There is no single test that can definitively diagnose PBS/IC. (See "Patient information: Urinary tract infections in adolescents and adults" and see "Patient information: Kidney stones in adults").

Physical examination — The physical examination usually includes a complete pelvic examination with a brief rectal exam. Often, patients with PBS/IC have tenderness in the lower abdomen, hips, and buttocks. Women often have tenderness in the vagina and around the bladder, and men may have tenderness in the scrotum and penis. For this reason, being examined can be uncomfortable. In some individuals, it may be necessary to use ultrasound to ensure that the pelvic organs have no evidence of abnormalities.

If an examination or ultrasound is too uncomfortable, some healthcare providers will recommend that the patient begin a course of treatment for PBS/IC without further testing. If improvement is not seen, it may be necessary to perform more testing to confirm the diagnosis.

Some providers will measure the amount of urine remaining in the bladder after the patient urinates; this is called a post-void residual. This measurement can be done by inserting a small catheter into the bladder or by using ultrasound. While it is normal to have some urine in the bladder after voiding, having a large amount of urine is not normal. Urinary retention is the medical term for retaining urine in the bladder, and is not typical of PBS/IC.

Laboratory tests — Most clinicians will perform a urine test to confirm the diagnosis of PBS/IC and ensure that a person's symptoms are not related to another condition, such as a kidney stone or bladder infection. If a urinary tract infection is discovered, the person will be treated with antibiotics. If blood is detected in the urine, further urine and/or diagnostic testing (eg, cystoscopy) may be recommended. (See "Patient information: Urinary tract infections in adolescents and adults" and see "Patient information: Blood in the urine (hematuria)").


Recurrent urinary tract infection — PBS/IC is sometimes misdiagnosed as a chronic or recurrent urinary tract infection. Some people are given antibiotics to treat the pain, urgency, and frequency of PBS/IC, although there is no benefit of antibiotics unless an infection is present. The best way to determine if a urinary tract infection is present is to have a urine culture and sensitivity. (See "Patient information: Urinary tract infections in adolescents and adults").

Cystoscopy — Cystoscopy is a test that allows a doctor to examine the inside of the bladder. Cystoscopy is not required to diagnose PBS/IC, but may be recommended in certain situations. Cystoscopy can be done in the office, after a numbing gel is applied inside the urethra. It can also be done in an operating room while a patient is under anesthesia, sometimes in combination with other procedures (see "Hydrodistension" below).

To perform cystoscopy, a physician inserts a thin telescope with a camera through the urethra and into the bladder. The physician examines the inside (lining) of the bladder to determine if there are any abnormalities. A person with PBS/IC may have either a normal or abnormal-appearing bladder. If an abnormality is seen, further testing may be recommended.

Hydrodistension — Hydrodistension is a procedure that is sometimes recommended to diagnose interstitial cystitis. The procedure is done while a person is under anesthesia, after cystoscopy. The physician fills the patient's bladder with water to stretch the walls of the bladder. The water is released after a few minutes, and then filled again with a smaller amount of water. The lining of the bladder is then examined with a cystoscope to determine if there are signs of IC. Signs of IC can include glomerulations (small reddened areas) and Hunner's patches (larger red areas). Some patients with painful bladder symptoms can have a completely normal appearance during cystoscopy, however. A biopsy (small tissue sample) may be taken from any abnormal areas and later examined with a microscope.

There are conflicting opinions about the need for hydrodistension in the diagnosis of IC. Although some clinicians still perform hydrodistension, most clinicians believe is not necessary or helpful to see such evidence of IC before treating it.

TREATMENT — A topic review that discusses the treatment of painful bladder syndrome/interstitial cystitis is available separately. (See "Patient information: Treatment of painful bladder syndrome and interstitial cystitis").

WHERE TO GET MORE INFORMATION — Your healthcare provider is the best source of information for questions and concerns related to your medical problem. Because no two patients are exactly alike and recommendations can vary from one person to another, it is important to seek guidance from a provider who is familiar with your individual situation.

This discussion will be updated as needed every four months on our web site (www.uptodate.com/patients). Additional topics as well as selected discussions written for healthcare professionals are also available for those who would like more detailed information.

A number of web sites have information about medical problems and treatments, although it can be difficult to know which sites are reputable. Information provided by the National Institutes of Health, national medical societies and some other well-established organizations are often reliable sources of information, although the frequency with which they are updated is variable.

National Library of Medicine
(www.nlm.nih.gov/medlineplus/healthtopics.html)


National Institute of Diabetes and Digestive and Kidney Diseases
(http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/)


Interstitial Cystitis Association
(www.ichelp.org)


Interstitial Cystitis Network
(www.ic-network.com)


European Society for the Study of Interstitial Cystitis
(www.essic.eu)


United States Department of Health and Human Services
(www.4woman.gov/faq/intcyst.htm)