This booklet is for people who have interstitial cystitis interstitial cystitis: see cystitis. and for their family, friends, and coworkers who want to understand the experiences and challenges associated with the disorder.
It contains information on the causes, diagnosis, and treatment of interstitial cystitis as well as information on current research studies that aim to understand and treat the disorder.
Basic and clinical research is advancing our knowledge of interstitial cystitis, but the disorder still poses many questions that scientists cannot answer. Only further research and the efforts of patients and doctors working together will shed light on improved treatments and, ultimately, a cure for this debilitating de·bil·i·tat·ing
Causing a loss of strength or energy.
Weakening, or reducing the strength of.
Mentioned in: Stress Reduction disorder.
Interstitial Cystitis: A Bladder Disorder
The urinary system consists of the kidneys, ureters Ureters
Tubes that connect the kidneys to the bladder. Urine produced by the kidneys passes through the ureters to the bladder.
Mentioned in: Chronic Kidney Failure, Cystectomy , bladder, and urethra urethra (yrē`thrə), canal in most mammals that carries urine from the bladder to the outside of the body; in the male it also serves as a genital duct. . The kidneys, a pair of purplish-brown organs, are located below the ribs toward the middle of the back. The kidneys remove liquid waste from the blood in the form of urine, keep a stable balance of salts and other substances in the blood, and produce erythropoietin erythropoietin /eryth·ro·poi·e·tin/ (-poi´e-tin) a glycoprotein hormone secreted by the kidney in the adult and by the liver in the fetus, which acts on stem cells of the bone marrow to stimulate red blood cell production , a hormone that aids the formation of red blood cells Red blood cells
Cells that carry hemoglobin (the molecule that transports oxygen) and help remove wastes from tissues throughout the body.
Mentioned in: Bone Marrow Transplantation
red blood cells . Narrow tubes called ureters carry urine from the kidneys to the bladder, a triangle-shaped chamber in the lower abdomen. Like a balloon, the bladder's elastic walls relax and expand to store urine and contract and flatten when urine is emptied through the uredira. The typical adult bladder can store about 1 1/2 cups of urine.
Adults pass about a quart and a half of urine each day. The amount of urine varies, depending on the fluids and foods a person consumes. The volume formed at night is about half that formed in the daytime.
Normal urine is sterile. It contains fluids, salts and waste products, but it is free of bacteria, viruses and fungi. The tissues of the bladder are isolated from urine and toxic substances by a coating that discourages bacteria from attaching and growing on the bladder wall.
People with interstitial cystitis (IC) have an inflamed, or irritated, bladder wall. This inflammation can lead to scaning and stiffening of the bladder, decreased bladder capacity, glomerulations (pinpoint bleeding) and, in rare cases, ulcers in the bladder lining.
IC, also known as painful bladder syndrome and frequency-urgency-dysuria syndrome, is a complex, chronic disorder that has baffled doctors for as long as it has been recognized.
Estimates of the number of people who have IC run as high as 500,000, but no one knows for sure how many people have it. About 90 percent of IC patients are women. While people of any age can be affected, about two-thirds of patients are in their twenties, thirties, or forties. IC is rare in children. In a few cases, IC has afflicted both mother and daughter, but there is no evidence that the disorder is hereditary, or genetically passed from parent to child.
Two Types of IC
Because IC varies so much in its symptoms and severity, most researchers believe that it is not one but several diseases. Two types of IC are usually described; they are mainly distinguished by whether ulcers have formed on the bladder wall. Most researchers believe that IC does not generally progress from the nonulcerative to the ulcerative ulcerative /ul·cer·a·tive/ (ul´se-ra?tiv) (ul´ser-ah-tiv) pertaining to or characterized by ulceration.
pertaining to or characterized by ulceration. form.
This disorder is the most common type of IC. It usually affects young to middle-age women who have a normal, near normal, or increased bladder capacity when measured under general anesthesia Anesthesia, General Definition
General anesthesia is the induction of a state of unconsciousness with the absence of pain sensation over the entire body, through the administration of anesthetic drugs. . Glomerulations can be seen in the bladder wall.
This type of IC tends to be found in middle-age to older women. Bladder capacity is low (less than 1 1/2 cups) when measured under general anesthesia. The decrease is thought to result in part from fibrosis, the formation of threadlike tissue that makes the bladder stiff and small. Cracks, scars, and Hunner's ulcers (star-shaped sores) in the bladder wall may bleed when the bladder is filled to capacity during a cystoscopy Cystoscopy Definition
Cystoscopy (cystourethroscopy) is a diagnostic procedure that is used to look at the bladder (lower urinary tract), collect urine samples, and examine the prostate gland. .
No one knows what causes IC, but doctors studying the disorder believe it is a real, physical problem--not a result, symptom, or sign of an emotional problem.
One area of research on the cause of IC has focused on the lining of the bladder called the glycocalyx, made up primarily of substances called mucins and glycosaminoglycans (GAGs). This layer normally protects the bladder wall from toxic effects of urine and its contents. Researchers at the University of California, San Diego UCSD is consistently ranked among the top ten public universities for undergraduate education in the United States by U.S. News & World Report. It is a Public Ivy.  For graduate studies, most of UCSD's Ph.D. , found that this protective layer of the bladder was "leaky" in about 70 percent of IC patients they examined and may allow substances in urine to pass into the bladder wall and trigger IC symptoms. The researchers also found that patients with Hunner's ulcers had "leakier" bladders than patients without the ulcers.
Some people are diagnosed with IC after taking antibiotics for a presumed urinary tract infection urinary tract infection (UTI),
n infection in one or more of the structures that make up the urinary system. Occurs more often in women and is most commonly caused by bacteria. . Therefore, it has been suggested that antibiotics may damage the bladder wall and make it "leaky." This idea has been studied carefully, but antibiotics have never been found to harm the bladder wall. Thus, other ideas are more likely to explain why some IC patients are diagnosed after a urinary tract infection. It is possible that the infection started an autoimmune response against the bladder, the patient's original symptoms were from IC all along, or an infeering organism is in bladder cells but is not detectable through routine tests.
The symptoms of IC vary greatly from one person to another but have some similarities to those of a urinary tract infection:
* decreased bladder capacity
* an urgent need to urinate urinate /uri·nate/ (u´ri-nat) to discharge urine.
To excrete urine.
to void urine. frequently day and night
* feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum perineum /peri·ne·um/ (-ne´um)
1. the pelvic floor and associated structures occupying the pelvic outlet, bounded anteriorly by the pubic symphysis, laterally by the ischial tuberosities, and posteriorly by the coccyx. (the area between the anus and vagina or anus and scrotum scrotum: see testis. ), which may increase as the bladder fills and decrease as it empties
* painful sexual intercourse sexual intercourse
or coitus or copulation
Act in which the male reproductive organ enters the female reproductive tract (see reproductive system). in men, discomfort or pain in the
* penis and scrotum.
In most women, symptoms usually worsen around the menstrual cycle menstrual cycle
The recurring cycle of physiological changes in the uterus, ovaries, and other sexual structures that occur from the beginning of one menstrual period through the beginning of the next. . As with many other illnesses, stress may also intensify symptoms but does not cause them.
Because the symptoms of IC, are similar to those of other disorders of the urinary system, and because there is no definitive test to identify IC, doctors must rule out other conditions before considering a diagnosis of IC. Among these disorders are urinary tract or vaginal infections, bladder cancer bladder cancer
Malignant tumour of the bladder. The most significant risk factor associated with bladder cancer is smoking. Exposure to chemicals called arylamines, which are used in the leather, rubber, printing, and textiles industries, is another risk factor. , bladder inflammation or infection caused by radiation to the abdomen, eosinophilic eosinophilic /eo·sin·o·phil·ic/ (-fil´ik)
1. readily stainable with eosin.
2. pertaining to eosinophils.
3. pertaining to or characterized by eosinophilia. and tuberculous tuberculous /tu·ber·cu·lous/ (too-ber´ku-lus) pertaining to or affected with tuberculosis; caused by Mycobacterium tuberculosis.
1. cystitis cystitis (sĭstī`tĭs), common acute or chronic inflammation of the urinary bladder. The disease occurs primarily in young women and frequently results from bacterial invasion of the urethra from the adjacent rectum, most commonly with , kidney stories, endometriosis endometriosis (ĕn'dəmē'trē-ō`sĭs), a condition in which small pieces of the endometrium (the lining of the uterus) migrate to other places in the pelvic area. , neurological disorders, sexually transmitted diseases Sexually transmitted diseases
Infections that are acquired and transmitted by sexual contact. Although virtually any infection may be transmitted during intimate contact, the term sexually transmitted disease is restricted to conditions that are largely , low-count bacteriuria bacteriuria /bac·te·ri·uria/ (bak-ter?e-u´re-ah) [bacteri- +-uria ] the presence of bacteria in the urine.
The presence of bacteria in the urine. , and, in men, chronic bacterial and abacterial a·bac·te·ri·al
1. Not caused by bacteria.
2. Free of bacteria.
abacterial (ā´baktir´ē- prostatitis prostatitis (prŏs'tətī`tĭs), inflammation of the prostate gland. Acute prostatitis is usually a result of infection in the urinary tract or infection carried by the blood; in many cases the infection spreads from the urethra and is .
Medical tests that help identify, other conditions include a urinalysis, urine culture Urine Culture Definition
A urine culture is a diagnostic laboratory test performed to detect the presence of bacteria in the urine (bacteriuria). , cystoscopy, biopsy of the bladder wall and, in men, laboratory examination of prostate secretions.
Urinalysis and Urine Culture
These tests can detect and identify the most common organisms in the urine that may be causing symptoms. There are, however, organisms such as the bacteria chlamydia chlamydia (kləmĭd`ēə), genus of microorganisms that cause a variety of diseases in humans and other animals. Psittacosis, or parrot fever, caused by the species Chlamydia psittaci, that can't be detected with these tests, so a negative culture does not rule out all types of infection. A urine sample is obtained either by catheterization catheterization
Threading of a flexible tube (catheter) through a channel in the body to inject drugs or a contrast medium, measure and record flow and pressures, inspect structures, take samples, diagnose disorders, or clear blockages. or by the "clean catch" method. For a "clean catch," the patient washes the genital area before collecting urine "midstream" in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, a doctor may consider a diagnosis of IC.
Culture of Prostate Secretions
In men, the doctor will obtain prostatic fluid prostatic fluid
A whitish secretion that is one of the constituents of semen. from the patient. This fluid will be examined for signs of an infection, which can be treated with antibiotics.
Cystoscopy Under Anesthesia With Bladder Distension dis·ten·tion also dis·ten·sion
The act of distending or the state of being distended.
[Middle English distensioun, from Old French, from Latin
During cystoscopy to diagnose IC,
the doctor uses a cystoscope--an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light--to see inside the bladder and urethra. The doctor will also distend di·stend
To swell out or expand or cause to swell out or expand from or as if from internal pressure. or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distension is painful in IC patients, before the doctor inserts the cystoscope cys·to·scope
A tubular instrument equipped with a light and used to examine the interior of the urinary bladder and ureter. Also called lithoscope.
cys through the urethra into the bladder, the patient must be given either regional or general anesthesia. These tests can detect inflammation; a thick, still bladder wall; Hunner's ulcers; and glomerulations (pinpoint bleeding) that may be seen only after the bladder is stretched.
The doctor may also test the patient's maximum bladder capacity, the amount of liquid or gas the bladder can hold under anesthesia. Without anesthesia, capacity is limited by either pain or a severe urge to urinate. Many people with IC have normal or large maximum bladder capacities under anesthesia. However, a small bladder capacity under anesthesia helps to support the diagnosis of IC.
A biopsy is a microscopic examination of tissue. Samples of the bladder and urethra may be removed during a cystoscopy and examined with a microscope later. A biopsy helps rule out bladder cancer and confirm bladder wall inflammation.
Scientists have not vet found a cure for IC, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, however, they may return after days, weeks, months, or years. Scientists do not know why.
Because doctors do not know what causes IC, treatments are aimed at relieving symptoms. Most people are helped for variable periods of time by one or a combination of treatments, many of which are described briefly in this booklet. However, as researchers learn more about IC, the list of potential treatments may change. Patients should discuss treatment options with a doctor.
Because some patients have noted an improvement in symptoms after a bladder distension done to diagnose IC, the procedure is often thought of as one of the first treatment attempts. Researchers are not sure why distension helps, but some believe that the procedure may increase bladder capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distension, but should then return to predistension levels or improve after 2 to 4 weeks.
This procedure may also be called a bladder wash or bath. During a bladder instillation, the bladder is filled with a solution that is held for varying periods of time, from a few seconds to 15 minutes, before being drained through a narrow tube called a catheter.
The only drug approved by the U.S. Food and Drug Administration (FDA FDA
Food and Drug Administration
n.pr See Food and Drug Administration.
n.pr the abbreviation for the Food and Drug Administration. ) for bladder instillation is dimethyl sulfoxide dimethyl sulfoxide (DMSO)
Colourless, nearly odourless liquid organic compound. It mixes in all proportions with water, ethanol, and most organic solvents and dissolves a wide variety of compounds (but not aliphatic hydrocarbons). (DMSO DMSO dimethyl sulfoxide.
Dimethyl sulfoxide; a colorless hygroscopic liquid obtained from lignin, used as a penetrant to convey medications into the tissues.
n. , RIMSO[R]-50). With DMSO treatments a narrow tube (catheter) is guided up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks, and repeated as needed. Most people with IC who respond to DMSO notice improvement of symptoms 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize cath·e·ter·ize
To introduce a catheter into.
cathe·ter·i·za themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration of DMSO is less expensive and more convenient than going to the doctor's office.
Doctors think DMSO works in several ways. Because it passes into the bladder wall, DMSO may more effectively reach tissue to reduce inflammation and block pain. It may also prevent muscle contractions that may cause pain, frequency, and urgency.
A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor from the breath and skin. This may last up to 72 hours after a treatment. Long-term DMSO treatments have caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a complete blood count and kidney and liver function tests Liver Function Tests Definition
Liver function tests, or LFTs, include tests for bilirubin, a breakdown product of hemoglobin, and ammonia, a protein byproduct that is normally converted into urea by the liver before being excreted by the kidneys. , should be done about every 6 months.
A variety of other drugs have been used experimentally for bladder washes, including silver nitrate, sodium oxychlorosene (Clorpactin[R] WCS-90), heparin, and pentosanpolysulfate (Elmiron[R]).
Silver nitrate and oxychlorosene sodium are thought to work by first attacking the bladder lining. This triggers the body's immune system to step in and start the healing process. Some patients have been successfully treated with these drugs, but the frequent, painful treatments usually must be done under general anesthesia. Neither drug can be used in people who have urinary reflux, a condition in which urine flows backward up the ureters into the kidneys.
Heparin and pentosanpolysulfate are thought to work by replacing or repairing the "leaky" bladder lining.
There are no oral drugs approved by the FDA specifically for the treatment of IC, but a variety of drugs such as aspirin, ibuprofen ibuprofen (ī`byprō'fən), nonsteroidal anti-inflammatory drug (NSAID) that reduces pain, fever, and inflammation. , and histamines, and the urinary tract pain reliever phenazopyridine (available by prescription as Pyridium[R], and over-the-counter as Azo-Standard[TM]) may help lessen symptoms.
A blend of atropine atropine (ăt`rəpēn, –pĭn), alkaloid drug derived from belladonna and other plants of the family Solanaceae (nightshade family). , hyoscyamine hyoscyamine /hyo·scy·amine/ (hi?o-si´ah-men) an anticholinergic alkaloid that is the levorotatory component of racemic atropine and has similar actions but twice the potency; used as an antispasmodic in gastrointestinal and urinary tract , methenamine methenamine /meth·en·amine/ (meth?en-am´in) an antibacterial used in urinary tract infections; administered as the hippurate and mandelate salts.
n. , methylene blue, phenyl salicylate and benzoic acid (Urised[R]) may inhibit the growth of organisms in the urine and reduce bladder spasms that cause frequency, urgency, and nighttime trips to the bathroom. Drugs such as oxybutynin chloride (Ditropan[R] also may reduce bladder spasms. In separate studies of only a few patients each, hydroxyzinc (Vistaril[R] and Atarax[R]), an antihistamine antihistamine (ăn'tĭhĭs`təmēn), any one of a group of compounds having various chemical structures and characterized by the ability to antagonize the effects of histamine. , and nifedipine nifedipine /ni·fed·i·pine/ (ni-fed´i-pen) a calcium channel blocking agent used as a coronary vasodilator in the treatment of coronary insufficiency and angina pectoris; also used in the treatment of hypertension. (Procardia[R]), a heart disease and high blood pressure treatment, have been reported to reduce symptoms in some IC patients. But, as stated by the authors of these reports, further studies are needed to determine the drugs' true value in IC patients. All of these drugs must be prescribed by a physician.
Amitriptyline amitriptyline /am·i·trip·ty·line/ (am?i-trip´ti-len) a tricyclic antidepressant with sedative effects; also used in treating enuresis, chronic pain, peptic ulcer, and bulimia nervosa. (Elavil[R]) is an FDA-approved tricyclic antidepressant, but its ability to block pain and reduce bladder spasms makes it helpful in treating IC. Amitriptyline may cause drowsiness but can be taken at night to reduce this effect. Most people who respond to this drug show improvement 3 or 4 weeks after starting treatment. The dose may need adjustment for the best possible results.
The experimental drug sodium pentosanpolysulfate (Elmiron[R]) is thought to repair the layer lining the bladder. In several studies, 19 percent to 65 percent of patients reported at least partial symptom relief. Most people who respond to pentosanpolysulfate see improvement within 6 to 8 weeks after starting treatment. There are few side effects, but the most common is skin rash. Clinical trials have been completed, and the drug's manufacturer has requested FDA approval to market pentosanpolysulfate as a treatment for IC. Until approved by FDA, doctors can prescribe the drug only by first obtaining approval for compassionate use in individual patients, or by having patients participate in an FDA-approved clinical trial.
Another experimental drug, nalmefene nalmefene /nal·me·fene/ (nal´me-fen?) an opioid antagonist, used as the hydrochloride salt in the treatment of opioid overdose and postoperative opioid depression. hydrochloride hydrochloride /hy·dro·chlo·ride/ (-klor´id) a salt of hydrochloric acid.
A compound resulting from the reaction of hydrochloric acid with an organic base. (Incystene[TM), blocks the body's receptors to pain, thus inhibiting the sensation of pain. Nalmefene is currently being evaluated in the treatment of IC in an FDA-approved clinical study sponsored by the drug's manufacturer.
Because drugs have side effects, patients should always consult a doctor before using any drug for an extended time.
TENS (Transcutaneous Electrical Nerve Stimulation transcutaneous electrical nerve stimulation
Transcutaneous electrical nerve stimulation (TENS)
A method for relieving the muscle pain of TMJ by stimulating nerve endings that do not transmit pain. )
With TENS, mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the lower back or the supra-pubic region, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. Although scientists don't know exactly how it works, it has been suggested that the electric pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, and trigger the release of hormones that block pain.
TENS is relatively inexpensive and allows the patient to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. TENS has been most helpful in relieving pain and decreasing frequency in IC patients who have Hunner's ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, change usually occurs in 3 to 4 months.
There is no scientific evidence linking diet to IC, but some doctors and patients believe that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also notice a worsening of symptoms after eating or drinking products containing artificial sweeteners. Patients may try eliminating such products from their diet and reintroduce them one at a time to determine which, if any, affect symptoms. It is important, however, to maintain a well-balanced and varied diet.
Many IC patients feel that smoking worsens their symptoms. (Because smoking is the major known cause of bladder cancer, one of the best things a smoker can do for the bladder is to quit smoking.
Many IC patients feel that regular exercise helps relieve symptoms and, in some cases, hastens remission.
People who have found some relief from pain may be able to reduce frequency using bladder training techniques. Methods vary, but basically the patient decides to void at designated times and use relaxation techniques and distractions to help keep to the schedule. Gradually, the patient tries to lengthen the time between the scheduled voids. A diary of voids is usually helpful in keeping track of progress.
This option is considered only if an IC patient has failed all available treatments and the pain is severe. Most doctors are reluctant to operate because the outcome is unpredictable in individual patients--some people have surgery and still have symptoms.
Anyone considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon and family, as well as with people who already have had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery, and as the complexity of the procedure increases, so do the chances for complications and failure.
To locate a surgeon experienced in performing specific procedures, check with your doctor.
Transurethral transurethral /trans·ure·thral/ (trans?u-re´thral) performed through the urethra.
performed through the urethra. fulguration ful·gu·ra·tion
The destruction of tissue, usually malignant tumors, by means of a high-frequency electric current applied with a needlelike electrode. and resection of ulcers. Fulguration involves burning Hunner's ulcers using electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments, done under anesthesia, use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should only be done by doctors who have the special training and expertise needed to perform the procedure.
Denervation denervation /de·ner·va·tion/ (de?ner-va´shun) interruption of the nerve connection to an organ or part.
denervation is a complicated procedure done by surgeons who have special training and expertise. Rarely used in the treatment of IC, it involves cutting some of the nerves to the bladder, interfering with pain signals. Many approaches and techniques are used, each of which has its own advantages and complications that should be discussed with the surgeon.
Augmentation makes the bladder larger, most often by adding a section of the patient's small intestine, a tube-like structure that absorbs and transports nutrients from food for use by the body. With this treatment, scarred, ulcerated Ulcerated
Damaged so that the surface tissue is lost and/or necrotic (dead).
Mentioned in: Adenoid Hyperplasia and inflamed sections of the patient's bladder are removed, leaving only healthy tissue and the base of the bladder. A piece of the patient's small intestine is removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may be able to void normally.
Even in carefully selected patients--those with small, contracted bladders--the pain, frequency, and urgency may remain or return after surgery and the patient may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened intestine. Some patients are incontinent in·con·ti·nent
1. Lacking normal voluntary control of excretory functions.
2. Lacking sexual restraint; unchaste. while others cannot void at all and must insert a catheter into the urethra to empty urine from the bladder.
Bladder Removal (Cystectomy Cystectomy Definition
Cystectomy is a surgical procedure to remove the bladder.
Cystectomy is performed to treat cancer of the bladder. Radiation and chemotherapy are also used to treat bladder cancer. ).
Different methods can be used to reroute urine once the bladder has been removed. In most cases, the ureters are attached to a piece of bowel that opens onto the skin of the abdomen, called a stoma stoma
Any of the microscopic openings or pores in the epidermis of leaves and young stems. They are generally more numerous on the undersides of leaves. . Urine empties through the stoma into a bag outside the body. This procedure is called a urostomy u·ros·to·my
Surgical construction of an artificial excretory opening from the urinary tract.
A diversion of the urinary flow away from the bladder, resulting in output through the abdominal wall. . Some urologists are using a technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with ether type of urostomy must use very clean, or sterile, steps to prevent infections in and around the stoma.
With a third method, a new bladder is made from a piece of the patient's bowel (large intestine) and attached to the urethra in place of the removed bladder. After a time of healing, the patient may be able to empty the bladder by voiding at scheduled times or may insert a catheter into the urethra. Few surgeons have the special training and expertise needed to perform this procedure.
Even after total bladder removal, some patients still experience variable symptoms of IC. Therefore, the decision to undergo a cystectomy should only be undertaken after serious deliberation on the potential outcome.
Electrical Nerve Stimulation Electrical Nerve Stimulation Definition
Electrical nerve stimulation, also called transcutaneous electrical nerve stimulation (TENS), is a noninvasive, drug-free pain management technique. . This surgical treatment is a variation of TENS, described previously, but invokes permanent implantation of electrodes and a unit that emits continuous electrical pulses. This relatively new procedure has variable short-term results, unknown long-term effects and, therefore, is not widely used.
There is no evidence that IC increases the risk of bladder cancer. However, the long-term effects of IC require further observation and research.
Researchers have little information about pregnancy and IC, but believe that the disorder does not affect fertility or the health of the fetus. Some women have a remission from IC during pregnancy, while others have more pain and pressure during the third trimester, possibly due to the weight of the fetus on the bladder.
Symptom flare-ups that result in frequent absences from work may make it difficult to get or keep a job. The Social Security Administration provides information on Social Security Disability benefits. The National Organization of Social Security Claimants' Representatives can refer you to a lawyer experienced with Social Security claims. (See "Other Resources."
The emotional support of family, friends, and other people with IC is very important in helping patients cope with the disorder. Studies have found that IC patients who learn about the disorder and become involved in their own care do better than patients who do not. The Interstitial Cystitis Association can provide the address and phone number of the nearest support group. (See "Other Resources.")
Although answers may seem slow in coming, researchers are working every day to solve the painful riddle of IC. Some scientists receive funds from the Federal Government to help support their research, and some receive support from other sources such as their employing institution, drug companies, and the Interstitial Cystitis Association. Researchers and doctors around the country, regardless of who funds their work, may competently diagnose and treat IC.
The National Institute of Diabetes and Digestive and Kidney Diseases About NIDDK
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), of the U.S. National Institutes of Health, conducts and supports research on many of the most serious diseases affecting public health. (NIDDK NIDDK National Institute of Diabetes and Digestive and Kidney Diseases ), a part of the National Institutes of Health (NIH "Not invented here." See digispeak.
NIH - The United States National Institutes of Health. ), leads the Federal Government's research efforts on IC. Most studies funded by the NIDDK are a result of unsolicited grant applications sent to NIH by scientists at universities and medical centers throughout the United States. Other NIDDK-funded studies result from solicitations issued to encourage increased research on a certain topic.
By law, all applications sent to NIH are first reviewed by non-Government experts in the field of the proposed research for scientific merit and feasibility before being reviewed by the NIDDK's National Advisory Council. The council is made up of non-Government scientists, health professionals, and individuals who represent voluntary groups with an interest in the research of the institute. Approved applications are eligible for funding based on a scientific merit rating, or priority score, assigned by the initial reviewers. applications are usually funded in priority score order, with the best applications funded first.
The NIDDK's investment in scientifically meritorious IC research has grown considerably since 1987, largely due to special solicitations. We now support research across the country that is looking at various aspects of IC, such as how urine contents may injure the bladder and what possible role organisms identified using nonstandard non·stan·dard
1. Varying from or not adhering to the standard: nonstandard lengths of board.
2. methods may have in causing IC. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.
An important part of the NIDDK IC research program is the National IC Database Study, which will provide the first systematic, long-term look at a large number of people with IC. The database is expected to provide clues about how IC develops, how to diagnose and categorize patients, and how to treat the disorder more effectively.
Nine clinical centers and a data coordinating center have joined forces in this national project to collect and analyze dietary, diagnostic, symptom, treatment, and other information from more than 1,300 people with mild, moderate, or severe symptoms of IC. Patients may enroll at any listed center, regardless of where they live, but must be willing to travel to that center for evaluation and followup. Patients will be enrolled and monitored through April 1997.
National Interstitial Cystitis Database Study
University of California, San Diego Medical Center
Mail Code 8897
200 West Arbor
San Diego, CA 92103-8897
Diana LeBow, 619/543-5611
Northwestern University Medical School
707 North Fairbanks Court, Suite 618
Chicago, IL 60611
Mary Nieweglowski, R.N., 312/908-7019
William Beaumont Hospital This article is about William Beaumont Hospital, Michigan. For for the hospital in Dublin, see Beaumont Hospital, Dublin.
William Beaumont Hospital is a regional medical system in the greater Detroit, Michigan area. Research Institute
3601 West 13 Mile Road
Royal Oak, MI 48073
Alexandre Afanasyev, M.D., 313/551-0885
Henry Ford Hospital Henry Ford Hospital is a hospital located in Detroit, Michigan a few blocks from Wayne State University and the New Center area, near the Fisher Building and Cadillac Place. The hospital was founded in 1915 by Henry Ford as a philanthropic project.
2799 West Grand Boulevard
Detroit, MI 48202
Michelle Fedon, R.N., 313/556-8265
University of Oklahoma University of Oklahoma, abbreviated OU, is a coeducational public research university located in the U.S. state of Oklahoma. Founded in 1890, it existed in Oklahoma Territory near Indian Territory 17 years before the two became the state of Oklahoma.
Health Sciences Center
920 Stanton L. Young Boulevard
Fifth Floor, Room 330
Oklahoma City, OK 73104
Linda Walker, R.N.,
405/271-1693 or 6900
Hospital of The University of Pennsylvania (body, education) University of Pennsylvania - The home of ENIAC and Machiavelli.
Address: Philadelphia, PA, USA.
Division of Urology
3400 Spruce Street
Fifth Floor Silverstein Pavilion
Philadelphia, PA 19104
Marilou Foy, R.N., 215/349-5874
The Graduate Hospital
1800 Lombard Street, Suite 606
Philadelphia, PA 19146
Marilou Foy, R.N., 215/349-5874
Temple University Hospital
Department of Urology
3401 North Broad Street
Parkinson Pavilion, Suite 350
Philadelphia, PA 19140
Marilou Foy, R.N., 215/349-5874
University of Wisconsin Hospital and Clinics The University of Wisconsin Hospital and Clinics (UWHC) constitute the academic health care system for the University of Wisconsin System, with more than 60 locations throughout the state, including the UW Hospital and American Family Children’s Hospital in Madison, Wisconsin.
600 Highland Avenue
Madison, WI 53792
Diane Pauk, B.S., 608/263-9721 or 1363
Data Coordinating Center (not accepting patients)
Center for Biostatistics and Epidemiology
Hershey Medical Center
Pennsylvania State University Pennsylvania State University, main campus at University Park, State College; land-grant and state supported; coeducational; chartered 1855, opened 1859 as Farmers' High School. College of Medicine
500 University Drive
Hershey, PA 17033
Diagnostic Criteria for Research Studies
Patients enrolled in NIDDK-supported research studies must fit strict diagnostic criteria so that researchers can reliably compare patients and study results. When too many variables are involved in research studies it is difficult, if not impossible, to clearly evaluate disease processes and potential treatments.
The diagnostic criteria for research studies were established in 1987 and refined in 1988 as a result of NIDDK-sponsored workshops that brought together basic and clinical researchers and patient groups. As our knowledge about IC develops, these criteria likely will be revised.
The materials listed below may be found in medical libraries, many college and university libraries, through interlibrary loan in most public libraries, add at bookstores. Items are listed for information only; inclusion does not imply endorsement by the NIH.
Articles and Book Chapters
Bavendam, TG. "A Common Sense
Approach To Lower Urinary Tract
Hypersensitivity hypersensitivity, heightened response in a body tissue to an antigen or foreign substance. The body normally responds to an antigen by producing specific antibodies against it. The antibodies impart immunity for any later exposure to that antigen. , in Women.
Contemporary Urology, 1992; 4(4):25-40.
Fleischmann, JD, et al. "Clinical and
Immunological Response to, Nifedipine for the Treatment of Interstitial Cystitis."
The Journal of Urology, 1991; 146:1235-1239.
Hanno, PM, et al. "Diagnosis of Interstitial Cystitis." The Journal of Utology, 1990; 143(2):278-281.
Interstitial Cystitis Association. "IC and Social Security Disability." ICA Ica (ē`kä), city (1993 pop. 108,724), capital of Ica dept., SW Peru, on the Pan-American Highway. It is a commercial center for the cotton, wool, and wine produced in the region. There are several summer resorts nearby. Update, 1988; 3 (3): 1.
Messing, EM. "Interstitial Cystitis and Related Syndromes." Campbell's Urology.
Eds. Walsh, PC, et al. Philadelphia, WB
Saunders Company, 1986. 1070-1083.
Mosedale, L. "Embattled Bladders."
Health, 1990; 22(5):40-78.
Parsons, CL. "Managing Interstitial
Cystitis." Contemporary Urology, March 1690; 2:4549.
Perez-Marrero, R, Emerson, LE.
"Interstitial Cystitis." The Canadian Journal of OB/GYN, February 1990; 4-10.
Ratner, V, et al. "Interstitial Cystitis: A Bladder Disease Finds Legitimacy."
Journal of Women's Health, 1992; 1 (1):63-68.
Sant SANT South African Native Trust , GR. "Interstitial Cystitis: Pathophysiology pathophysiology /patho·phys·i·ol·o·gy/ (-fiz?e-ol´ah-je) the physiology of disordered function.
1. , Clinical Evaluation, and Treatment." Urology Annual Ed.
Rous, SN. Connecticut, Appleton
Lange, 1989. 171-196.
Schmidt, RA, Vapnek, JM. "Pelvic Floor Behavior and Interstitial Cystitis."
Seminars in Urology, 1991; 9(2):154-159.
Schmidt, RA. "Treatment of Unstable Bladder." Urology. 1991; 37(1):28-32.
Tanagho, EA. "Interstitial Cystitis."
General Urology. Eds. Tanagho, EA,
McAninch, JW. Connecticut, Appleton & Lange, 1988. 554-555.
Theoharides, TC. "Hydroxyzine for Interstitial Cystitis." Journal of Allergy and Clinical Immunology The Journal of Allergy and Clinical Immunology is a scientific journal in the field of allergy and immunology, with an emphasis on clinical relevance. It's the official journal of the American Academy of Allergy, Asthma, and Immunology. . 1993; 91:686-687.
Books and Booklets
Budish, AD. Avoiding the Medicaid Trap: How To Beat the Catastrophic Costs of Nursing Hame hame
One of the two curved wooden or metal pieces of a harness that fits around the neck of a draft animal and to which the traces are attached. Care. New York, Holt, 1989.
Chalker, R, Whitmore, KE. Overcoming Bladder Disorders. New York, Harper Row, 1990.
Gillespie, L., Blakeslee, S. You Don't Have To Live With Cystitis! New York, Avon Books, 1986.
Hanno, PM, et al., ed. Interstitial Cystitis. New York, Springer, Verlag, 1990.
National Institutes of Health, Office of Clinical Center Communications. Single copies are available from NIH/OCCC, Relieving Pain/IC, Building 10, Room 1C255,9000 Rockville Pike, Bethesda, MD 20892.
Pitzele, SK. We Are Not Alone--Learning To Live With Chronic Illness. Minneapolis, Thompson, 1985.
Sant, GR, Guest ed. "Interstitial Cystitis 1987." Supplement to Urology. 26(4). New Jersey, Hospital Publications, Inc., 1987.
Schrotenboer, K, Berkman, S. The Woman Doctor's Guide To Overcoming Cystitis. New York, Nal Penguin, Inc., 1987.
American Foundation for Urologic Disease
The Bladder Health Council
300 West Pratt Street, Suite 401
Baltimore, MD 21201
410/727-2908 or 1-800-242-2383
American Pain Society
5700 Old Orchard Road
Skokie, IL 60077
American Uro-Gynecologic Society
401 North Michigan Avenue
Chicago, IL 606114267
International Pain Foundation
909 Northeast 43rd Street, Suite 306
Seattle, WA 98105-6020
Interstitial Cystitis Association of America, Inc.
P.O. Box 1553
Madison Square Station
New York, NY 10159-1553
212/979-6057 or 1-800-ICA-1626
National Chronic Pain Outreach Association
7979 Old Georgetown Road, Suite 100
Bethesda, MD 20814
National Kidney Foundation Not to be confused with American Kidney Fund.
The National Kidney Foundation, Inc. (NKF) is a major voluntary health organization in the United States. Its mission is to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and
30 East 33rd Street
New York, NY 100 1 6
212/889-2210 or 1-800-622-9010
National Kidney and Urologic Diseases
3 Information Way
Bethesda, MD 20892-3580
National Organization of Social Security
6 Prospect Street
Midland Park, NJ 07432
201/444-1415 or 1-800-431-2804
Social Security Administration write or call your local office (found in the telephone book under U.S. Government, Department of Health and Human Services Noun 1. Department of Health and Human Services - the United States federal department that administers all federal programs dealing with health and welfare; created in 1979
Health and Human Services, HHS ) or call 1-800-234-5772
United Ostomy ostomy
Surgical opening in the body, or the operation creating it, usually to allow discharge of wastes through the abdominal wall. It may be temporary, to relieve strain on damaged organs, or permanent, to replace normal channels congenitally missing or surgically removed Association
36 Executive Park, Suite 120
Irvine, CA 92714
This booklet was written by Mary M. Harris of NIDDK's Office of Health Research Reports. Scientific review was provided by Dr. Philip Hanno, Temple University Medical Center, Philadelphia; Dr. C. Lowell Parsons, University of California, San Diego; Dr. Grannum Sant, New England Medical Center, Boston; Dr. Deborah Erickson, Pennsylvania State University College of Medicine, Hershey; Dr. Leroy Nyberg, NIDDK; and Dr. Vicki Ratner and Debra Slade, ICA.
This booklet is not copyrighted. Readers are encouraged to duplicate and distribute as many copies as needed. Single copies may be obtained from the National Kidney and Urologic Diseases Information Clearinghouse, 3 Information Way, Bethesda, MD 20892-3580.