Urinary Tract Infections and Fibromyalgia Part II Interstitial Cystitis

Recurrent UTI symptoms may point at a problem known as interstitial cystitis (IC).

Interstitial cystitis is a chronic inflammatory condition of the bladder that causes frequent, urgent, and painful urination and pelvic discomfort. The lining of the bladder breaks down, allowing toxins to irritate the bladder wall, and the bladder becomes inflamed and tender and does not store urine well. The condition does not respond to antibiotics, since it is not associated with a bacterial infection like is UTI. Like UTI, IC is much more common among women than among men. Although the disease previously was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their 20s and younger. Data released just this year suggests that up to 12% of women may have early symptoms of IC.

Symptoms: The symptoms of IC are basically the symptoms of UTI, only more stubborn. IC is often misdiagnosed as UTI, until it refuses to respond to antibiotics. IC symptoms may also initially be attributed to prostatitis or epididymitis (in men) and endometriosis or uterine fibroids (in women).

Causes: The cause of interstitial cystitis is unknown, though several theories are being investigated, including autoimmune, neurological, allergic, and genetic. Regardless of the disease’s origin, IC patients clearly struggle with a damaged bladder lining. When this protective coating is compromised, urinary chemicals can leak into surrounding tissues, causing pain, inflammation, and urinary symptoms.

Diagnosis: IC diagnosis has been greatly simplified in recent years with the development of two new methodologies. The “Pelvic Pain Urgency/Frequency (PUF) Patient Survey,” created by C. Lowell Parsons, is a short questionnaire that helps doctors identify if pelvic pain could be coming from the bladder. The KCL test, also called the potassium sensitivity test, uses a mild potassium solution to test the integrity of the bladder wall. Though the latter is not specific for IC, it has been determined helpful in predicting the use of compounds designed to help repair the bladder lining.

Previously, IC was diagnosed by visual examination of the bladder wall after stretching it. This test, however, can contribute to the development of small hemorrhages, making IC worse. Thus, a diagnosis of IC is made by excluding other illnesses and reviewing a patient’s clinical symptoms.

Treatment of the bladder lining: Traditional medications work to repair and hopefully rebuild the wounded bladder lining, allowing for a reduction in symptoms. But FDA-approved therapies for IC have had recent setbacks in various research studies. Elmiron (pentosan polysulfate) is supposed to provide a protective coating in the bladder. But data released in late 2005 by Alza Pharmaceuticals suggests that 84% of Elmiron is eliminated—intact—in the feces. Another 6% is excreted in the urine. DMSO, a wood-pulp extract, can be instilled directly into the bladder via a catheter, yet it is much less frequently used in urology clinics. Research studies presented at recent conferences of the American Urological Association have demonstrated that at the FDA-approved dosage of a 50% solution of DMSO, irreversible muscle contractions and damage may occur. DMSO therapy has yielded mixed results, and long-term benefits appear fleeting.

Recently, the use of a new therapeutic instillation—implemented like DMSO—has generated considerable excitement in the IC community. And rightly so. Published studies report a 90% effectiveness in reducing symptoms. This treatment is called a “rescue instillation” and can be conducted with any number of “cocktails” to treat specific symptoms.

Another bladder-coating treatment, Cystistat, is believed to replace the deficient layer on the bladder wall. The primary component of Cystistat is sodium hyaluronate, a derivative of hyaluronic acid, which occurs naturally in the fluids of the eye, in the joints, and in the bladder-lining layer that is deficient in many patients with interstitial cystitis. This layer is believed to provide the bladder wall with a protective coating. Cystistat, however, is still in the process of approval and not yet available to the public.

Treatment of the pelvic floor: Pelvic-floor dysfunction may also be a contributing factor to IC symptoms. Thus most major IC clinics now evaluate the pelvic floor and/or refer patients directly to a physical therapist for a prompt treatment of pelvic floor muscle tension or weakness. The tension is often described as a burning sensation, particularly in the vagina.

Muscle tension is the primary cause of pain and discomfort in IC patients who experience pain during intercourse. Tender trigger points (small tight bundles of muscle) may also be found in the pelvic floor.

Exercises such as Kegels can be helpful as they strengthen the muscles, but they can provoke pain and additional muscle tension. A specially trained physical therapist can provide direct, specific evaluation of the muscles, both externally and internally.

Bladder distention (a procedure done under general anesthesia that stretches the bladder capacity) has shown some success in reducing urinary frequency and giving pain relief to patients. Unfortunately, the relief achieved by bladder distentions is only temporary (weeks or months) and consequently is not really viable as a long-term treatment for IC. It is generally only used in extreme cases.

Pain control is important in the treatment of IC, as the pain of this condition has been rated equivalent to cancer pain. A variety of traditional pain medications, including opiates, can be used to treat the varying degrees of pain. Electronic pain-killing options include TENS (a machine that sends electrical impulses to the skin through sticky pads) and PTNS (similar to a TENS treatment, except a needle is used).

Natural Remedies For IC

Alkalinizing the urine through diet seems to help reduce the burning pain and urinary urgency of IC in some patients. See the facing page for a list of common foods that seem to make IC worse. I know that the list can be intimidating, but I encourage my cystitis patients to conduct a modified elimination diet for 2–3 weeks, avoiding all the foods above. Then they challenge one of these foods at a time. If you do this, be sure to keep a food diary to keep up with what you learn about your body.

For more information about IC and your diet, visit www.ic-network.com/handbook and click under “Living with IC—Diet.”

Prelief by AkPharma, Inc. is calcium glycerophosphate, a food-grade mineral classified as a dietary supplement. It’s a natural
treatment for IC and also a good source of calcium. In a retrospective study conducted by AkPharma, over 200 patients consumed acidic foods and beverages with and without Prelief. Seventy percent of the patients had a reduction in IC pain and discomfort with the use of Prelief when consuming acidic foods. Sixty-one percent of them reported a reduction in urinary urgency after using Prelief. For more information or to order Prelief, visit www.prelief.com or call 1-800-994-4711.

Bioflavonoids are naturally occurring substances that act as mast-cell inhibitors (similar to an antihistamine), anti-inflammatories, and antioxidants. Since IC is associated with an increased number and activation of mast cells and inflammation in some patients, it has been suggested that bioflavonoids—quercetin in particular—have potential in the treatment of IC.

Cysta-Q, distributed by Farr Labs, is a quercetin-based dietary supplement that was specifically developed to target the symptoms of IC. Cysta-Q also contains bromelain, papain, nonacidic cranberry powder, nonacidic black cohosh, skull cap, wood betony, passionflower, and valerian in order to enhance the effectiveness of the quercetin. The quercetin used in Cysta-Q is derived from grape skin, onion skin, grapefruit rind and green algae. Initial studies have shown promise, but additional research is needed to access the long-term benefits of this natural formula. To find out more about Cysta-Q, visit www.CystaQ.com or call 1-877-284-3976.

Polysaccharides are long chains of sugar molecules. These naturally occurring substances may work by replacing the defective lining in the bladder, and they are thought to have a protective effect on the bladder. Elmiron is a synthetic polysaccharide. Examples of natural polysaccharides include glucosamine, chondroitin, marshmallow root, spirulina, and aloe vera. Desert Harvest, Inc., manufacturers a special IC-specific formula of aloe vera available in capsule form. It contains freeze-dried, whole-leaf aloe vera with no additives or fillers. Desert Harvest designed a double-blind, placebo-controlled study in which patients ingested three capsules twice a day with eight oz. of liquid for three months. Of the eight patients who completed the study, seven received relief from at least some of their symptoms. Of those seven, four experienced significant relief from all or most of their symptoms. Only one patient had no response after completing all six months of the study. For more information about Desert Harvest Aloe Vera products, visit www.desertharvest.com or call 1-800-222-3901.

Algonot-Plus combines polysaccharides (glucosamine and chondroitin) with quercetin and also adds an organic, unrefined olive seed oil from the island of Crete which increases absorption and adds its own antioxidants.

No formal research on this combined type of treatment for IC has yet been published, but several studies indicate that these supplements may be helpful, on their own, in the treatment of IC.
Glucosamine and chondroitin have previously been given to many IC patients in an open-label study with very good results when taken for a few months.

TC Theoharides, MD, and Grannum Sant, MD, have been involved in IC research and patient care for over 10 years. Their recent studies are encouraging for the benefits of combined therapies such as Algonot-Plus. For more information on Algonot-Plus, visit www.algonot.com, or call 1-800-254-6668.

 This information is taken from my book Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome.

Learn more at www.getfibrobooks.com