Anyone know what interstitial cystitis is?

I have had intenst pain during sex since I began doing it (7 yrs). I have seen doctor after doctor and I went to one yesterday who told me that I could possibly have interstitial cystitis. Does anyone out there have it that can give me a personal experience on how the medications work? Any alternatives to medication out there? How did the test feel for you? It sounds agonizing to me and I just am quite confused about the whole process, disorder and prognosis. Thanks!

Interstitial Cystitis is a chronic pelvic pain disorder. IC affects an estimated 700,000 Americans; 90% of which are female. Symptoms may include feelings of pressure or tenderness around the bladder, intense pelvic pain, fatigue, dysuria (pain or burning with urination), hematuria (blood in the urine), urinary frequency, urgency or retention, and dyspareunia. Women's symptoms will often get worse during menstruation.

Some sufferers also complain of IBS, allergies and migraines.

Typically, all urine cultures will be negative and symptoms will not respond to typical antibiotic therapy.

While there are several theories regarding the etiology of IC, definitive causes remain unknown. One theory being studied with respect to IC is that it is an autoimmune response following a bladder infection. Other theories include the belief that bacteria may be present in the bladder cells, but remains undetectable through routine cultures; that certain substances in urine may be irritating to IC sufferers; and that the condition may be hereditary.

IC is a diagnosis of exclusion. Physicians must rule out other disorders like urinary tract or vaginal infections, cancer of the bladder, cystitis, kidney stones, neurological disorders, STDs (sexually transmitted diseases), bacteria in the urine, chronic bacterial and nonbacterial prostatitis (in men), and Endometriosis of the urogenitoury tract.

The most important test to confirm IC is the cystoscopy. Pinpoint hemorrhages on the bladder wall, discovered during the cystoscopy, are hallmark signs of IC.

IC is currently incurable; however, there are many treatment options. Symptom relief can potentially be obtained through such measures as bladder distention, bladder instillation (or "bladder wash"), medications like Elmiron (pentosan polysulfate sodium), aspirin and ibuprofen for discomfort, antidepressants, antihistamines, narcotics like Tylenol with Codeine, TENS units (Transcutaneous Electrical Nerve Stimulation), alternative therapies, and modifications in nutritional and lifestyle habits, such as eliminating alcohol, high acid foods like tomatoes or spices, chocolate, caffeinated and citric beverages, and those products with artificial sweeteners from the diet, quitting smoking, and performing gentle stretching exercises.

Surgery can also be considered when other treatments have failed. In severe, extreme cases, bladder removal can be performed. However, some patients will still continue to experience variable IC symptoms.

Patients with IC speak of underdiagnosis and undertreatment of the condition, though it has gained recent attention through celebrity awareness campaigns. Sufferers relate experiences of feeling ignored, experiencing depression and suffering from chronic pelvic pain, seemingly with no end or relief in sight. Research is desperately needed to discover what causes IC and more importantly, how to cure it.

Symptom snapshot:
pressure or tenderness around the bladder
mild to intense pelvic pain
dysuria (pain or burning with urination)
dyspareunia (painful intercourse)
hematuria (blood in the urine)
fatigue
urinary frequency, urgency or retention
symptoms may be worse during menstruation


The meds and treatment take time and dont always work

Interstitial cystitis is a chronic, painful inflammatory condition of the bladder wall characterized by pressure and pain above the pubic area along with increased frequency and urgency of urination. This occurs 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. The exact cause of interstitial cystitis is not known.