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MoonDragon's ObGyn Information
INTERSTITIAL CYSTITIS (IC)
(Bladder Wall Inflammation)


"For Informational Use Only"
For more detailed information contact your health care provider
about options that may be available for your specific situation.




BASIC INFORMATION


DESCRIPTION

Interstitial cystitis (IC) is an inflammation of the bladder wall resulting in recurring discomfort or pain in the bladder and the surrounding pelvic region. Interstitial cystitis has symptoms similar to cystitis (bacterial infection of the bladder), but urine cultures are negative for bacteria and antibiotics usually do not help. The average age of onset is 40, but it affects women of all ages. Symptoms range from mild to severe and may vary from case to case and even in the same individual.




FREQUENT SIGNS AND SYMPTOMS

Interstitial cystitis is a chronic, painful inflammatory condition of the bladder wall characterized by pressure, mild discomfort, tenderness and/or intense pain above the pubic area and pelvic region along with increased frequency and/or urgency of urination. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse with menstruation. They may sometimes experience pain with vaginal intercourse. These symptoms occur because of chronic inflammation of the lining of the bladder and swelling of the interior walls of the bladder. Affected individuals urinate frequently with pain even though there is no diagnosed bladder infection. In a small percentage of cases, people with interstitial cystitis also have scarring and ulcerations on the membranes that line the bladder. Interstitial cystitis typically affects young and middle-aged women, although men can also have this disorder.

Interstitial Cystitis (IC) & Painful Bladder Syndrome (PBS)

Because interstitial cystitis varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC/PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

In IC/PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC/PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).

IC/PBS is far more common in women than in men. Of the estimated 1 million Americans with IC, up to 90 percent are women.





CAUSE

Exact cause for interstitial cystitis is unknown. Several explanations have been advanced to explain the underlying cause of this disease but some have not been substantiated. Studies suggest that it is a syndrome of bladder inflammation possibly initiated by bacterial infection, autoimmune process (misdirected immune response in which the body's defenses become self destructive) or contact irritants. It is probably not an infectious disease. Although no bacteria or viruses (pathogens) have been found in the urine of IC sufferers, an unidentified infectious agent may be the cause.

An explanation which has been widely accepted in recent years involves ischemia (tissue death) or a defect in the glycosaminoglycan (GAG) layer on the inner lining (epithelium) of the bladder wall. This defect in the GAG layer is thought to cause abnormal permeability in the inner lining of the bladder thus allowing urinary substances to infiltrate the bladder wall. This infiltration of the bladder wall by urinary substances is thought to be responsible for the irritative lower urinary tract symptoms of patients with interstitial cystitis. It may be an autoimmune disease, in which the immune system attacks healthy cells, perhaps following a bladder infection.

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.

More recently, another explanation was put forth when it was discovered that patients with interstitial cystitis have diminished nitric oxide synthase activity in the urine. Nitric oxide synthase is necessary for the production of nitric oxide which is required for bladder muscle relaxation. Furthermore, inhibition of nitric oxide synthase has been shown to increase bladder wall permeability.

Yet another proposal is based on electron microscopy findings of focal inflammation involving the nerves in and around the urinary bladder wall. This could explain the pain experienced by patients with interstitial cystitis. This then provides the basis for the use of anti-inflammatory agents in this condition.

Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. Some evidence suggests an increased risk for IC in people of Jewish ancestry; and studies of mothers, daughters, and twins who suffer from it suggest a hereditary risk factor.

Spasms of the pelvic floor muscles may also contribute to the IC symptoms. It is likely that several factors cause the condition. Other conditions associated with IC include the following:
  • Asthma.
  • Endometriosis.
  • Food allergies.
  • Hay fever (pollen allergy).
  • Incontinence.
  • Irritable bowel syndrome.
  • Lupus.
  • Migraine.
  • Rheumatoid arthritis.
  • Sinusitis.

The connection between IC and these conditions is not understood. IC may occur following gynecological surgery.





RISK INCREASES WITH

  • A history of sensitivities or allergies to medications, food, or other substances; hay fever or asthma.


  • Rheumatoid arthritis.


  • Previous hysterectomy.





  • PREVENTIVE MEASURES

  • None known.





  • EXPECTED OUTCOME

  • Treatments are available that may control or minimize the symptoms, but do not cure the disorder. Medical studies are ongoing to help determine the cause, more beneficial treatments and a possible cure.


  • Women with the disorder may have flare-ups and remissions; also, different women respond to different treatment. In some women, a treatment may work and then lose its effectiveness.





  • POSSIBLE COMPLICATIONS

  • Unrelieved symptoms that come and go and may vary in intensity from mild to severe.




  • TREATMENT


    GENERAL MEASURES

    Because symptoms are similar to those of other disorders of the urinary bladder and because there is not definitive test to identify IC/PBS, health care providers must rule out other treatable conditions before considering a diagnosis of IC/PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC/PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

    The diagnosis of IC / PBS in the general population is based on:
    • Presence of pain related to the bladder, usually accompanied by frequency and urgency.


    • Absence of other diseases that could cause the symptoms.

    Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.

    Differential Diagnosis: Several diseases and conditions have symptoms similar to IC. They may be ruled out, diagnosed instead of IC, or found to be coexistent:
    • Bladder stones (urolithiasis)
    • Carcinoma of the bladder in situ
    • Gynecological disorders (endometriosis, ectopic pregnancy, fibroids, ovarian tumor)
    • Inflammation of the bladder (caused by chronic low-grade bacterial cystitis, cyclophosphamide cystitis, tuberculosis cystitis, radiation cystitis)
    • Kidney disease (renal tuberculosis)
    • Neurological disorders (multiple sclerosis)
    • Pelvic floor dysfunction (PFD)
    • Prostatitis (men)
    • Sexually transmitted diseases (e.g., genital herpes, chlamydia)
    • Surgical adhesions
    • Urethrocele (bladder hernia into the vagina) or cystocele (tissue growth around the urethra)


    DIAGNOSTIC TESTS

  • Initial diagnostic tests will include urine studies (which are usually normal) and a pelvic examination. Conditions that have similar symptoms (bladder infection, kidney problems, vaginal infections, endometriosis, and sexually transmitted diseases) will need to be excluded.


  • Urinalysis and Urine Culture: Examining urine under a microscope and culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC/PBS. A urine sample is obtained either by catheterization 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, the health care provider may consider a diagnosis of IC/PBS.

    Culture of Prostate Secretions: Although not commonly done, in men, the health care provider might obtain prostatic fluid and examine it for signs of a prostate infection, which can then be treated with antibiotics.

  • If other tests are negative, a cystoscopy (use of a small lighted telescope to view the inside of the bladder) is often recommended. A biopsy is taken at this time to rule out a malignancy. As an added benefit, cystoscopy often helps relieve symptoms. It involves distention of the bladder by filling it with water, thereby stretching the bladder and increasing its capacity.


  • cystoscope


    Cystoscopy Under Anesthesia With Bladder Distention: The health care provider may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the examiner 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 examiner might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful in patients with IC/PBS, they must be given some form of anesthesia for the procedure.



    Glomerulations: Left image shows glomerulations (tiny hemorrhages that are the telltale sign of IC). These are only revealed while the bladder is distended and are present in 95 percent of IC cases. The image on the right shows a healthy bladder. Less frequently, epithelial ulcerations (Hunner's ulcers), lesions and scars are found. Hunner's ulcers are not indicative of IC, though hydrodistention is not needed to see them. Cystoscopy may also reveal bladder stones, which can cause symptoms similar to IC.

    The examiner may also test the patient's maximum bladder capacity - the maximum amount of liquid or gas the bladder can hold. This procedure must be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate.

    Parson's Test: The potassium chloride (KCl) sensitivity test (Parsons test) is an experimental procedure used occasionally to test for IC and evaluate a patient's potential response to treatments such as Elmiron® that work on the bladder lining. A catheter is used to instill the bladder with a potassium chloride solution. The KCl solution is thought to reveal deficiencies in the GAG layer of the bladder wall. The test is painful and may be only 60% to 75% accurate. It is not yet widely accepted as a diagnostic test for IC.

    Biopsy: A biopsy is a tissue sample that can be examined under a microscope. Samples of the bladder and urethra may be removed during a cystoscopy. A biopsy helps rule out bladder cancer.

    Future Diagnostic Tools: Researchers are investigating and validating some promising biomarkers such as anti-proliferative factor (APF), some cytokines, and other growth factors. These might provide more reliable diagnostic markers for IC and lead to more focused treatment for the disease.

    CONVENTIONAL MEDICAL TREATMENT

    There is not consistently effective treatment for the disorder nor have scientists have yet found a cure for IC/PBS, nor can predictions be made about 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, they may return after days, weeks, months, or years. Scientists do not know why.

    Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with their health care provider.

    Options include various oral medications, medications instilled into the bladder, special routines for stretching the bladder, diet changes, bladder retraining, relaxation training, and transcutaneous electrical nerve stimulation (TENS).

    Bladder Distention: Many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC/PBS. In many cases, the procedure is used as both a diagnostic test and initial therapy. Researchers are not sure why distention helps, but some believe that it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.

    Bladder Instillation: During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied. The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, RIMSO-50). DMSO treatment involves guiding a narrow tube called a catheter 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 who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize themselves may, after consultation with their health care provider, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to their health care provider's office or clinic. Health care providers think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency. A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 72 hours after treatment. Long-term treatment has 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, should be done about every 6 months.

    Oral Drugs: Pentosan polysulfate sodium (Elmiron) - This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Health care providers do not know exactly how it works, but one theory is that it may repair defects that might have developed in the lining of the bladder. The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms. Elmiron's side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications. Elmiron may affect liver function, which should therefore be monitored by the health care provider. Because Elmiron has not been tested in pregnant women, the manufacturer recommends that it not be used during pregnancy, except in the most severe cases.

    Other Oral Medications: Aspirin and ibuprofen may be a first line of defense against mild discomfort. Health care providers may recommend other drugs to relieve pain. Some patients have experienced improvement in their urinary symptoms by taking tricyclic antidepressants (amitriptyline) or antihistamines. Amitriptyline may help to reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some patients may not be able to take it because it makes them too tired during the day. In patients with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer acting narcotics may be necessary.

    Note: All drugs-even those sold over the counter-have side effects. Patients should always consult a health care provider before using any drug for an extended amount of time.

    Transcutaneous Electrical Nerve Stimulation: With transcutaneous electrical nerve stimulation (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 just above the pubic area, 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 do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances 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. It has been most helpful in relieving pain and decreasing frequency in patients with Hunner's ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.

    Bladder Training: People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void (empty their bladder) at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, patients try to lengthen the time between scheduled voids. A diary in which to record voiding times is usually helpful in keeping track of progress.



    Counseling, Biofeedback, Self-hypnosis, Self-relaxation Therapy: is often recommended to help manage the stress, anger, anxiety and sometimes, depression that accompanies disorders of chronic pain.

    Surgery: Surgical measures are rarely used (only as a last resort when other methods of treatment have failed and quality of life with disabling pain warrants drastic steps). Many approaches and techniques are used, each of which has its own advantages and complications that should be discussed with a surgeon. Your health care provider may recommend consulting another surgeon for a second opinion before taking this step. Most health care providers are reluctant to operate because the outcome is unpredictable: Some people still have symptoms after surgery.

    People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon and with their family, as well as with people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and for failure.

    To locate a surgeon experienced in performing specific procedures, check with your health care provider.

    Two procedures - fulguration and resection of ulcers - can be done with instruments inserted through the urethra. Fulguration involves burning Hunner's ulcers with 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 are done under anesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for patients with Hunner's ulcers and should be done only by health care providers who have had special training and have the expertise needed to perform the procedure.

    Another surgical treatment is augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient's bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient's colon (large intestine) is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC/PBS can sometimes recur on the segment of colon used to enlarge the bladder.

    Even in carefully selected patients - those with small, contracted bladders - pain, frequency, and urgency may remain or return after surgery, and patients may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients are incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.

    A surgical variation of TENS, called sacral nerve root stimulation, involves permanent implantation of electrodes and a unit emitting continuous electrical pulses. Studies of this experimental procedure are now under way.

    Bladder removal, called a cystectomy, is another, very infrequently used, surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body.

    Some urologists are using a second 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 either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.

    A third method to reroute urine involves making a new bladder from a piece of the patient's colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.

    Even after total bladder removal, some patients still experience variable IC/PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and after seriously considering the potential outcome.

    SPECIAL CONCERNS

  • Cancer: There is no evidence that IC/PBS increases the risk of bladder cancer.


  • Pregnancy: Researchers have little information about pregnancy and IC/PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC/PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.


  • Coping: The emotional support of family, friends, and other people with IC/PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.


  • RESEARCH

    Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC/PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.

    NIDDK's investment in scientifically meritorious IC/PBS research across the country has grown considerably since 1987. The Institute now supports research that is looking at various aspects of IC/PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC/PBS. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.

    The Interstitial Cystitis Clinical Research Network (ICCRN) is a product of two NIDDK programs: the Interstitial Cystitis Database (ICDB) Study and the Interstitial Cystitis Clinical Trials Group (ICCTG). Established in 1991, the ICDB was a five-year prospective cohort study of more than 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. The study described the longitudinal changes of urinary symptoms, the impact of IC on quality of life, treatment patterns, and the relationship between bladder biopsy findings and patient symptoms. The ICCTG was established in 1996 as a follow-up to the ICDB study. The clinical trials group developed two randomized, controlled clinical trials of promising therapies, one using oral therapies-pentosan polysulfate sodium (Elmiron) and hydroxyzine hydrochloride (Atarax)- and the other administering intravesical treatment using Bacillus Calmette-Guérin (BCG). BCG is a vaccine for tuberculosis that stimulates the immune system and may have an effect on the bladder. The ICCTG also developed and conducted ancillary studies of various biomarkers such as heparin-binding-growth-factor-like-growth-factor (HB-EGF) and anti-proliferative factor (APF).

    In 2003, the ICCTG became the Interstitial Cystitis Clinical Research Network (ICCRN), which is conducting additional clinical trials, either sequentially or concurrently, over a second five-year period. Ancillary studies will be developed and conducted in conjunction with the trials. One of these trials is studying the effectiveness of amitriptyline (Elavil) in treating painful bladder syndrome, which includes IC. Amitriptyline has FDA approval for the treatment of depression, but researchers believe the drug may work to block nerve signals that trigger pain in the bladder and may also decrease muscle spasms in the bladder, helping to cut both pain and frequent urination. Participants in the trial will be randomly assigned to take up to 75 milligrams of amitriptyline or a placebo each day for 14 to 26 weeks.

    Additional information available from a variety of resources. Here are some to start off your research (please note that some may be listed more than once with a different address - both were included in the event there was a change of location by an organization and one may be outdated):
      American Foundation for Urologic Disease
      1000 Corporate Boulevard
      Suite 410
      Linthicum, MD 21090
      Phone: 1-800-828-7866 or 410-689-3990
      Email: admin@afud.org
      Internet: www.afud.org

      American Foundation for Urologic Disease
      1128 North Charles Street
      Baltimore, MD 21201
      Tel: 410-468-1800
      Fax: 410-468-1808
      Tel: 800-242-2383
      Email: admin@afud.org
      Internet: www.afud.org

      American Pain Society
      4700 West Lake Avenue
      Glenview, IL 60025
      Phone: 847-375-4715
      Email: info@ampainsoc.org
      Internet: www.ampainsoc.org

      National Chronic Pain Outreach Association
      7979 Old Georgetown Road, Suite 100
      Bethesda, MD 20814-2429
      Phone: 301-652-4948
      Fax: 301-907-0745


      American Urogynecologic Society
      2025 M Street NW., Suite 800
      Washington, DC 20036
      Phone: 202-367-1167
      Fax: 202-367-2167
      Email: augs@dc.sba.com
      Internet: www.augs.org

      International Association for the Study of Pain
      909 Northeast 43rd Street, Suite 306
      Seattle, WA 98105-6020
      Phone: 206-547-6409
      Email: iaspdesk@juno.com
      Internet: www.iasp-pain.org

      The Interstitial Cystitis Association (ICA)
      P.O. Box 1553, Madison Square Station
      New York, 02NY 10159
      Tel: 212-979-6057 or 800-422-1626

      Interstitial Cystitis Association
      110 North Washington St
      Suite 340
      Rockville, MD 20850
      Tel: 301-610-5300
      Fax: 301-610-5308
      Tel: 800-435-7422
      Email: ICAmail@ichelp.org
      Internet: www.ichelp.org

      National Kidney Foundation
      30 East 33rd Street
      New York, NY 10016
      Phone: 800-622-9019 or 212-889-2210
      Email: info@kidney.org
      Internet: www.kidney.org

      NIH/National Kidney and Urologic Diseases Information Clearinghouse
      3 Information Way
      Bethesda, MD 20892-3580
      Tel: 800-891-5390
      Email: nkudic@info.niddk.nih.gov
      Internet: http://kidney.niddk.nih.gov/

      National Organization of Social Security Claimants' Representatives
      6 Prospect Street
      Midland Park, NJ 07432-1691
      Phone: 800-431-2804
      Email: webmaster@nosscr.org
      Internet: www.nosscr.org

      Social Security Administration
      Write or call your local office: look in the telephone book under U.S. Government, Department of Health and Human Services or call 1-800-772-1213, visit www.ssa.gov on the Internet, or write to: Social Security Administration
      Office of Public Inquiries
      Windsor Park Building
      6401 Security Boulevard
      Baltimore, MD 21235-6401

      United Ostomy Association
      19772 MacArthur Boulevard, Suite 200
      Irvine, CA 92612
      Phone: 800-826-0826 or 949-660-8624
      Fax: 949-660-9262
      Email: info@uoa.org
      Internet: www.uoa.org





    MEDICATION

  • Antihistamines, anticholinergics, nonsteroidal anti-inflammatory drugs (NSAIDs), and antidepressants all have limited success with decreasing the symptoms.


  • Sodium pentosanpolysulfate has demonstrated effectiveness in relieving symptoms for some women.


  • DMSO (dimethyl sulfoxide) or other medications may be instilled (placed directly) into the bladder. The DMSO is left in for about 15 minutes and then expelled. The treatment is repeated every 2 weeks or until symptoms are relieved and then repeated as needed. DMSO use produces a garlic-like smell to the skin and breath lasting up to 72 hours.


  • Medications used to treat IC are administered by different methods. They include:
    • Local Medication - medication instilled directly into the bladder via a catheter.
    • Systemic medication - drugs taken orally.
    • Chronic pain medications.

    LOCAL MEDICATIONS

    Dimethyl Sulfoxide (DMSO, Rimso-50®) may be instilled (intravesical) through the urethra and directly into the bladder via a catheter. It is the only FDA-approved instillation treatment for IC. It enters the bladder wall and reduces inflammation, pain, and painful muscle contractions; it may be mixed with heparin, steroids, or other local anesthetics. It may leave a garlicky taste and smell on the skin and in the breath for up to 72 hours. Heparin is similar to GAG and may help to repair problems caused by GAG deficiency in the bladder. Blood, liver, and kidney tests are required every 6 months during DMSO therapy.

    Hyaluronic acid (Cystistat®) and Bacille Calmette-Guerin (BCG) are undergoing clinical trials for IC treatment and are not widely available in the United States. Similar to heparin and GAG, Cystistat may help to repair a deficient bladder lining. BCG is a weakened form of cow tuberculosis (Mycobacterium bovis), which is used in tuberculosis vaccine in some European countries. Research shows that it may stimulate the immune system and improve the cellular makeup of the epithelium. The risk factors of BCG treatment are not fully understood, but may include inflammatory response in the bladder, tuberculosis-like chest infection, and the development of fibrous lumps (granulomas) in the bladder.

    Silver nitrate and sodium oxychlorosene (Clorpactin®) were once used for instillation but are now considered outdated, because they cause irritation and greater risk for complications in the abdomen.

    Temporary worsening of symptoms can occur up to 36 hours after any instillation treatment. Chemical cystitis is also a possible side effect.

    SYSTEMIC MEDICATION

    Pentosan polysulfate sodium (Elmiron®) is the only oral medication approved by the Food and Drug Administration (FDA) for IC. It is thought to prevent irritating elements in the urine from affecting the cells that line the bladder, but its precise method of action is unknown. Since Elmiron is chemically similar to glycosaminoglycan (GAG), it helps to rebuild the epithelium by coating the bladder wall. It may take up to 6 months to provide relief from symptoms. Elmiron must be taken on a long-term basis to keep symptoms from recurring. Side effects include gastrointestinal discomfort and reversible hair loss, but these are uncommon.

    Hydroxyzine (Vistaril®, Atarax®) is an antihistamine and mild anti-anxiety drug. It prevents mast cell degranulation, which is thought to play a role in IC, particularly in patients who have a history of allergies, migraine, and irritable bowel syndrome. Hydroxyzine decreases nighttime urination (nocturia), frequency, pain, and bladder pressure. Side effects include dry mouth and sedation.

    Oxybutynin chloride (Ditropan XL®), Detrol®, and a combination of atropine, hyoscyamine, methenamine, methylene blue, phenyl salicylate, and benzoic acid (Urised®) may reduce bladder spasms that cause frequency, urgency, and nighttime urination. Valium and other muscle relaxants may also be used to reduce spasms associated with IC.

    Amitriptyline (Elavil®) and doxepin (Sinequan®) are tricyclic antidepressants that help to block pain, calm bladder spasms, and reduce inflammation; they may be useful in small doses.

    CHRONIC PAIN MEDICATIONS

    A typical IC treatment regimen includes medication for chronic pain:
    • Anticonvulsant drugs - Tegretol®, Neurontin®
    • Benzodiazepines - Xanax®, Ativan®
    • Narcotics - Vicodin®, Percocet®
    • Nonsteroidal anti-inflammatory drugs (NSAIDs) - Advil®, Aleve®, Celebrex®
    • Trycyclic and SSRI antidepressants - Tofranil®, Prozac®

    Generally, these are calming drugs. Benzodiazepines, for example, are used to treat anxiety; they are now thought to exert analgesic effects and reduce pelvic floor muscle spasm. Antidepressant medications affect levels of neurotransmitters in the brain, which are responsible for mood, concentration, and the ability to manage difficult situations. They, too, are used for their pain-blocking effects. IC sufferers typically have sensitivities to foods and drugs, which may be activated by these medications. It may be necessary to take them initially in small doses. Some may be combined, under the supervision of a health care provider, to control severe pain.

    Many of these drugs carry a risk for kidney and liver dysfunction, and some require routine monitoring and blood tests. Pregnant women should consult their health care providers before taking them. Due to potentially severe gastrointestinal and cardiovascular side effects, NSAIDs should only be used as instructed.

    Discuss with your health care provider or pharmacist the side effects and precautions that are associated with each type of medication.





    HOLISTIC, NUTRITIONAL & HERBAL TREATMENT METHODS

    Interstitial cystitis (IC) is a chronic inflammation of the urinary bladder. Naturopathic treatment involves inhibiting the inflammatory process by removing inflammatory and irritating foods from the diet, taking nutritional supplements, and using herbal support.

    NUTRITION & DIET:

    The importance of nutrition cannot be overstated and changing to a healthy diet may help relieve symptoms.
    • Eliminate food sensitivities, which are often the cause of chronic inflammatory conditions. To determine food sensitivities, use an elimination and challenge diet.


    • Eat whole, fresh, unrefined, and unprocessed foods. Include fruits, vegetables, whole grains, beans, seeds, nuts, olive oil, and cold-water fish (salmon, tuna, sardines, halibut, and mackerel).


    • Avoid sugar, dairy products, refined foods, fried foods, junk foods, some beans (fava, lima, black, soy) and caffeine. Coffee, chocolate, alcohol, carbonated drinks, citrus fruits, and tomatoes often worsen symptoms. Drink 50 percent of your body weight in ounces of water daily (e.g., if you weigh 150 lbs, drink 75 ounces of water daily).

    NUTRITIONAL SUPPLEMENTS

    Supplements include:
    HERBAL REMEDIES

    Herbal medicines usually do not have side effects when used appropriately and at suggested doses. Occasionally, an herb at the prescribed dose causes stomach upset or headache. This may reflect the purity of the preparation or added ingredients, such as synthetic binders or fillers. For this reason, it is recommended that only high-quality products be used. As with all medications, more is not better and overdosing can lead to serious illness and death. The following herbs may be used to treat IC:
    Herbs to consider as a tea:
    HOMEOPATHY

    Homeopathy - A trained homeopathic practitioner is needed to diagnose and prescribe a deep-acting, constitutional remedy. The standard dosage for acute symptom relief is 3 pellets of 30C every 4 hours until symptoms resolve. Lower potencies, such as 6X, 6C, 30X, may be given every 2 to 4 hours. If the right remedy is chosen, symptoms should improve shortly after the second dose. If there is no improvement after 3 doses, a different remedy is given. The following remedies may be effective in treating IC:
    • Apis Mellifica - Indicated for stinging pain that is worse with heat.




    • Cantharis - Indicated for intolerable urgency with burning, scalding urination.




    • Staphysagria - Indicated for a urinary tract infection that is the result of sexual intercourse.




    • Sarsaparilla - Indicated for pain that burns after urination has stopped.



    INTERSTITIAL CYSTITIS SUPPLEMENTAL PRODUCTS

    Information, supplements and products for interstitial cystitis.

    DMSO Liquid, 70% with 30% Distilled Water in Mist Sprayer, Clinic Service Co., 8 oz.

    DMSO Liquid, 70% with 30% Distilled Water, Clinic Service Co., 8 fl. oz.

    DMSO may be helpful for relieving pain, inflammation, scleroderma, and interstitial cystitis however, intended use is as a solvent only and the choice of using it in other applications is the sole responsibility of the user. Dimethyl Sulfoxide is a clear liquid known for its ability to permeate living tissue. It is believed to help stimulate cellular processes. It has a distinctive and slightly unpleasant odor, but Dr. Morton Walker, in his book, DMSO: The New Healing Power, describes how it appears to help block pain, reduce inflammation, kill bacteria and funguses, reduce blood clotting, improve circulation, neutralize free radicals, stimulate the immune system, and hasten the healing of wounds. It is not recommended to use this product if you are pregnant or nursing. Topical applications of DMSO should not exceed 70% in areas of the skin affected by poor circulation. The face and neck are more sensitive to topical DMSO than other parts of the body, and the maximum concentration of DMSO should therefore be reduced by diluting the concentrate with sterile or distilled water. If you develop a rash or redness, you may want to reconsider using this product.
    Yeast Connection Handbook, By William Crook, M.D.

    This easy-to-follow Yeast Connection Handbook brings readers the latest information about yeast related disorders and how to overcome them. Dr. William G. Crook's research has shown that many health disorders in both men and women can be traced to an overgrowth in the body of common yeast, Candida albicans. This revised edition of the Yeast Connection Handbook on the subject contains 25 percent new information, including data on health problems in children, interstitial cystitis, endometriosis, multiple sclerosis, alternative medicine, and non-prescription anti-yeast medications.
    Sutherlandia (Sutherlandia Frutescens), 300 mg, 60 Tabs

    Sutherlandia was used to treat urinary tract infections, including gonorrhea, and cystitis, particularly what would nowadays be termed 'interstitial cystitis'. As a dietary nutritional food supplement, take one (1) tablet daily or as prescribed by a health-care professional. Do not use during pregnancy or while breastfeeding. Consult your health-care professional of taking prescribed medication.


    PHYSICAL MEDICINE

    Castor oil packs can be applied for IC that has associated bladder cramping or pelvic discomfort.

    Herbal Remedies: Castor Oil, Expeller Pressed, 100% Pure, NOW Foods, 16 fl. oz.

    SUGGESTIONS FROM PEOPLE WITH IC

    Try this quick fix for pain right now: baking soda for IC pain, October 30, 2005 by Amazon Reviewer: anonymous - I have read many books on IC because I have it. I need to tell you that I have NOT read this one yet (The Interstitial Cystitis Survival Guide). but feel compelled to tell you that I have found relief from the pain and how you may be able to also, right now in about twenty minutes. Most people have baking soda in the house. Get a level teaspoon of it and add it to one third cup of water. Let it fully dissolve and drink it. It doesn't taste great but it will stop the pain in about twenty minutes. The burning will go away! I'm not kidding. This will solve the immediate problem. I think it changes the ph of the body which is too acid. It makes it more alkaline and that somehow works. The next thing I stumbled across while being treated for PTSD (post traumatic stress disorder) and anxiety was to be prescribed Neurontin (or generic name: Gabapentin). This seems to have gotten rid of IC almost entirely! My doctor and I didn't know this would happen! We just wanted to quell the anxiety problem. Now I only need to use baking soda one or two times a month. I had to increase the dosage of Neurontin slowly and after a while to everyone's amazement the pain went away. I don't have to tell you how life is such a drag with chronic pain, you know. So I just had to write this in the hope that it would help you. I didn't want invasive operations. And I read that they didn't work. I don't exactly want to push drugs but boy do I feel better. I hope you do too!!

    HELPFUL LINKS & PRODUCTS

    Fresh Tastes by Bev - Nutrition & Diet for IC






    ACTIVITY

    SMOKING: Many patients feel that smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC/PBS is unknown. Smoking, however, is the major known cause of bladder cancer. Therefore, one of the best things smokers can do for the bladder and their overall health is to quit.

    EXERCISE: Many patients feel that gentle stretching exercises may help IC/PBS symptoms. You may consider consult with a Yoga instructor or physical therapist about possible stretching exercises that may be helpful.






    DIET

  • Elimination of caffeine-containing beverages, alcohol, artificial sweeteners, spicy foods, chocolate, citrus fruits & beverages and tomatoes in the diet may help relieve symptoms. There is no scientific evidence linking diet to IC/PBS, but many health care providers and patients find that these substances and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.


  • MoonDragon's Health & Wellness: Allergies

    MoonDragon's Nutrition Information: Bland Diet - Helps some patients.




    NOTIFY YOUR OR HEALTH CARE PROVIDER IF...

  • You or a family member has symptoms of interstitial cystitis.


  • Intolerable pain occurs during treatment.


  • New, unexplained symptoms develop. Medications used in treatment may produce side effects.

  • Symptoms recur after treatment.





  • MoonDragon's ObGyn Information: Cystitis (Bladder Infection)

    MoonDragon's ObGyn Information: Sexually Transmitted Diseases (STDs)

    MoonDragon's ObGyn Information: Urethritis (Urethra Infection)

    MoonDragon's Health & Wellness: Allergies

    MoonDragon's Health & Wellness: Autoimmune Disorders





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  • Prescription for Nutritional Healing: The A-To-Z Guide To Supplements
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  • Prescription for Nutritional Healing: The A-To-Z Guide To Supplements
    -- by Phyllis A. Balch, James F. Balch - 4th Edition

  • Prescription for Herbal Healing: The A-To-Z Reference To Common Disorders
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  • The Complete Guide to Natural Healing



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