I just want to make it clear that interstitial cystitis is not the same as cystitis.
I have had IC 8 yrs now. Persons with IC often seek alternative treatments due to the nature of this disease. Every case has different symptoms and western medicine just can't offer treatment to a disease that is like a finger print. The problem seems to be that there aren't many well versed healers out there learning of IC.
It is thought that several reasons have caused IC. Normally IC stems from a problem that has brewed for time and finally a serious out of balance disease know as IC is present. Persons with long history of yeast infections, chronic UTI's , improper diet, hormonal imbalnces, all play a roll in IC. Every person will have a series of events that led them to IC. A lot of patients have had the feeling of a UTI where no bacteria is present the use of antibiotics are used over a long period of time leading to yeast and poor immune system leading to IC.Regardless of the origin, it is clear that the majority of IC patients struggle with a damaged urothelium, or bladder lining. When the surface GAG layer is damaged (via a UTI, excessive consumption of coffee or sodas, traumatic injury, etc.), urinary chemicals can "leak" into surrounding tissues, causing pain, inflammation, and urinary symptoms. Oral medications like Elmiron and medications that are placed directly into the bladder via a catheter work to repair and rebuild this damaged/wounded lining, allowing for a reduction in symptoms.
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.
(Numerous publications by Keay & colleagues available at PubmeD Keay, S, Zhang, C., Chai, T., Warren, J., Koch, K., Grkovic, D., Colville, H., Alexander, R. Antiproliferative factor, heparin-binding epidermal growth factor-like growth factor, and epidermal growth factor in men with interstitial cystitis versus chronic pelvic pain syndrome. J. Urol. 2004 63:22-26.)
Unfortunately, there is no definitive diagnostic test for IC. A diagnosis is usually based upon a patient's symptoms, a cystoscopic examination of the bladder under anesthesia and exclusion of other bladder diseases. During the cystoscopy urologists carefully examine the bladder wall for signs of IC, including small petechial hemorrhages (aka glomerulations or small wounds) and/or larger Hunner's Ulcers.
IC has many other disease that often come along with it. Some examples are IBS,vulvodynia,pelvic floor disorder,Migraines, CFS, Fibro,endometriosis, lupus,lyme and more.
I hope that more people become aware of this disease. It is painful in it's nature and difficult to treat. I myself have been going at this alone for the past 5 years due to not finding proper care. I end up teaching the dr's and they can not help me. I hope more people learn about this painful disease so that so many of us ICers do not have to feel alone and helpless.
I have come a long way in my healing but I still continue to look for someone willing to work with me.
For those of you willing to learn more good sites to look are the IC network and Amrit Willis RN solving the interstitial cystitis puzzle. She has a support group on yahoo and a newly revised book out.
I am located in south west Florida in the St. Pete Bradenton area for any of you willing to learn and help me find a light at the end of this road.