In spite of all that is now known about IC, it remains a condition that is diagnosed by exclusion. Physicians, usually a urologist, will eliminate confusing and confounding conditions before arriving at a diagnosis of IC. Once identified as IC, the patient is either treated by the physician or referred to an IC center. In either case, medications known to be beneficial in treating the symptoms of IC will be used.
Despite on-going research throughout the world, the root cause of IC remains a mystery. The symptoms of frequency, urgency and pain, however, are well documented. Unfortunately, these same symptoms could be present in whole or in part in other conditions. Proposed etiologies include the following:
- Deficiency in the glycosaminoglycan (GAG) layer on the luminal surface of the bladder, resulting in an increased permeability of the underlying submucosal tissues to toxic substances found in the urine
- Pathogenic role of mast cells in the detrusor and/or mucosal layers of the bladder
- Infection with an unknown, poorly characterized agent, i.e. slow growing virus
- Production of a toxic substance in the urine
- Neurogenic hypersensitivity or inflammation mediated locally at the bladder or at the spinal cord level
- Pelvic floor dysfunction or dysfunctional voiding
- Autoimmune disorder
The main symptoms of IC/PBS are:
- Painful bladder
- Increased frequency of urination
- Increased urge to urinate
The diagnosis for this condition is challenging. It is still diagnosed by exclusion in spite of numerous efforts by urologists all over the world to come to an agreement on the parameters to define IC. Criteria used for clinical research have not proven to be successful as they miss many patients with the condition. Unfortunately, at this time, there are no specific biological markers available to be used in diagnosis of IC.
Once a diagnosis of IC has been reached, there are many considerations regarding therapy. The most important is to reduce symptoms and improve quality of life for those affected. Given that IC may have co-morbid and other conditions impacting on the quality of life, a multi-modal approach is normally needed.
Oral medications used to treat the overall symptoms may be (in no particular order) analgesics, anti-depressants, anti-inflammatories, antispasmodics, anticholinergics, anticonvulsants, histamine-receptor antagonists, immunosuppressive agents, pentosan polysulfate sodium and prostaglandins. Various intravesical therapies are used alone or in combination. These are: DMSO, chondroitin sulfate (for example Uracyst®), hyaluronate, heparin and oxybutynin. Many physicians use their own proprietary combinations of the above therapies with other agents added with varying degrees of success.
Research has shown that there is no all-encompassing etiological mechanism for IC/PBS so the search for one product to be the panacea is futile. While clinical trials normally use one product and a placebo, in a clinical setting many products are employed.
The Interstitial Cystitis Association (ICA) advocates for interstitial cystitis (IC) research dedicated to discovery of a cure and better treatments, raises awareness, and serves as a central hub for the healthcare providers, researchers and millions of patients who suffer with constant urinary urgency and frequency and extreme bladder pain.
The Urology Care Foundation is committed to promoting urology research and education. They work with researchers, healthcare professionals, patients and caregivers to improve patients' lives. The Urology Care Foundation is the official foundation of the American Urological Association (AUA)—an organization of roughly 19,000 urologists.
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). It provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.
The IPBF is a non-profit, voluntary, umbrella organization, active worldwide, that promotes knowledge and awareness of interstitial cystitis, bladder pain syndrome/painful bladder syndrome, hypersensitive bladder, chronic pelvic pain and associated disorders among patients, patient support groups, health professionals and the general public. The IPBF promotes the interests of IC patients around the globe.
The Interstitial Cystitis Network is a woman owned,“social advocacy” health education company dedicated to interstitial cystitis, overactive bladder and other pelvic pain disorders. Using the internet, they create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 16 years, they have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at no cost to the patients who visit their website.