It is not unusual for patients to have been misdiagnosed with a variety of other conditions, including: overactive bladder, urethritis, urethral syndrome, trigonitis, prostatitis and other generic terms used to describe frequency/urgency symptoms in the urinary tract.
IC affects men and women of all cultures, socioeconomics, and ages. Although the disease previously was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their twenties and younger. IC is not a rare condition, however IC is more common in females than in men. Early research suggested that IC prevalence ranged from 1 in 100,000 to 5.1 in 1,000 of the general population. New epidemiological data released in 2006 by Dr. Matt Rosenberg now suggests that up to 12% of women may have early symptoms of IC.
In 2007, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) began using the umbrella term Urologic Chronic Pelvic Pain Syndromes (UCPPS) to refer to pain syndromes associated with the bladder (i.e. interstitial cystitis/painful bladder syndrome, IC/PBS) and the prostate gland (i.e. _CP.2FCPPS).
In 2008, terms currently in use in addition to interstitial cystitis include painful bladder syndrome, bladder pain syndrome and hypersensitive bladder syndrome, alone and in a variety of combinations. These different terms are being used in different parts of the world.
Recent work at the University of Maryland, Baltimore indicates that genetics may be a factor in a small subset of patients. Two genes, FZD8 and PAND, are associated with the syndrome. FZD8, at gene map locus 10p11.2, is associated with an antiproliferative factor secreted by the bladders of IC patients which "profoundly inhibits bladder cell proliferation," thus causing the missing bladder lining. PAND, at gene map locus 13q22-q32, is associated with a constellation of disorders (a "pleiotropic syndrome") including IC and other bladder and kidney problems, thyroid diseases, serious headaches/migraines, panic disorder, and mitral valve prolapse.
Often the symptoms of IC are misdiagnosed as a "common" bladder infection, or (cystitis). However, unlike cystitis, IC has not been shown to be caused by a bacterial infection, and the mis-prescribed treatment of antibiotics is ineffective. The symptoms of IC may also initially be attributed to prostatitis and epididymitis (in men) and endometriosis and uterine fibroids (in women).
In 2006, the ESSIC society proposed more rigorous and demanding diagnostic methods with specific classification criteria so that it cannot be confused with other, similar conditions. Specifically, they require that a patient must have pain associated with the bladder, accompanied by one other urinary symptom. Thus, a patient with just frequency or urgency would be excluded from a diagnosis. Secondly, they strongly encourage the exclusion of confusable diseases through an extensive and expensive series of tests including (A) a medical history and physical exam, (B) a dipstick urinalysis, various urine cultures, and a serum PSA in men over 40, (C) flowmetry and post-void residual urine volume by ultrasound scanning and (D) cystoscopy. A diagnosis of IC/PBS/BPS would be confirmed with a hydrodistention during cystoscopy with biopsy.
They also propose a ranking system based upon the physical findings in the bladder. Patients would receive a numeric and letter based score based upon the severity of their disease as found during the hydrodistention. A score of 1-3 would relate to the severity of the disease and a rating of A-C represents biopsy findings. Thus, a patient with 1A would have very mild symptoms and disease while a patient with 3C would have the worst available symptoms.
The problem with diet triggers is that they vary from person to person: the best way for a person to discover his or her own triggers is to use an elimination diet. This is where someone cuts out all foods except the basics (e.g. potatoes, bread, rice, water) and then introduces new foods one at a time. Trying to discover which foods are one's own triggers without the use of an elimination diet is like trying to do a scientific experiment whilst altering 10 variables all at once.
The two US FDA approved therapies for IC have had recent setbacks in various research studies. Oral Elmiron (aka pentosan polysulfate) is believed to provide a protective coating in the bladder, however data released in late 2005 by Alza Pharmaceuticals suggests that 84% of Elmiron is eliminated, intact, in feces. Another 6% is excreted via urine. In addition, the NIH funded ICCTG study of pentosan revealed results only slightly better than placebo. The latter study was criticized, however, for targeting only the most severe IC patients who were also the least likely to respond (i.e. the NIDDK diagnostic criteria).
DMSO, a wood pulp extract, is the only approved bladder instillation for IC yet it is much less frequently used in urology clinics. Research studies presented at recent conferences of the American Urological Association by C. Subah Packer have demonstrated that the FDA approved dosage of a 50% solution of DMSO had the potential of creating irreversible muscle contraction. However, a lesser solution of 25% was found to be reversible. Long term use is questionable, at best, particularly given the fact that the method of action of DMSO is not fully understood.
More recently, the use of a "rescue instillation" composed of elmiron or heparin, Cystistat, lidocaine and sodium bicarbonate, has generated considerable excitement in the IC community because it is the first therapeutic intervention that can be used to reduce a flare of symptoms. Published studies report a 90% effectiveness in reducing symptoms.
Other bladder coating therapies include Cystistat(TM) (sodium hyaluronate) and Uracyst(TM) (chondroitin). They are believed to replace the deficient GAG layer on the bladder wall. Like most other intravesical bladder treatments, this treatment may require the patient to lie for 20 - 40 minutes, turning over every ten minutes, to allow the chemical to 'soak in' and give a good coating, before it is passed out with the urine.
Pelvic floor dysfunction is a fairly new area of specialty for physical therapists world wide. The goal of therapy is to relax and lengthen the pelvic floor muscles, rather than to tighten and/or strengthen them as is the goal of therapy for patients with incontinence. Thus, traditional exercises such as Kegels, can be helpful as they strengthen the muscles, however they can provoke pain and additional muscle tension. A specially trained physical therapist can provide direct, hands on, evaluation of the muscles, both externally and internally. While weekly therapy is certainly valuable, most providers also suggest an aggressive self-care regimen at home to help combat muscle tension, such as daily muscle relaxation audiotapes, stress reduction and anxiety management on a daily basis. Anxiety is often found in patients with painful conditions and can subconsciously trigger muscle tension.
Electronic pain-killing options include TENS (a machine connected to sticky pads which one places on their body at certain pressure points; the TENS machine sends electrical impulses to the skin, using the human body as an 'earth'). PTNS stimulators have also been used, with varying degrees of success. This is similar to a TENS treatment, except a needle is used rather than sticky pads.
Surgical interventions are rarely used for IC. Neurostimulation techniques are not FDA approved for IC.
Alternative Clinical Studies have shown that certain Aloe Vera species may assist some symptoms. Visit www.icaloe.com study information to read more about. This is a company that has been around since 1992 and actually founded the Interstitial Cystitis Aloe Vera movement and research.