A 1987 survey of IC sufferers by the Urban Institute of Washington showed that 40 percent were unable to work; 27 percent were unable to have sex due to pain; 27 percent had marriage breakdown; 55 percent contemplated suicide and 12 percent attempted suicide.
For Dr. Vicki Ratner, now an orthopedic surgeon, who developed an intensely painful bladder condition as a medical student, it took 11 months of desperate search and visits to ten urologists and two allergists before the diagnosis of IC was made. Dr. Ratner founded the Interstitial Cystitis Association (ICA) in 1984. It was born, as she says, out of patient desperation.
Now, thanks to the hard work of the ICA, both doctors and the public are much more aware of this incapacitating condition. ICA has also lobbied successfully for eleven million dollars in research funds for IC and related areas.
Typically, if you have this problem, you experience recurrent and disabling bladder pain and urinary frequency, but urine cultures keep coming back normal, that is, showing no signs of bacterial infection.
During these painful episodes, you feel a painful burning sensation when you pass urine. You can also experience urgency which means the urgent need to go to the toilet to urinate, but little result when you do. Most likely you also have urinary frequency, that is, you have to urinate more frequently than normal and often during the night as well. Some sufferers urinate as many as fifty times a day.
In interstitial cystitis, the interstitium, the protective layer that lines the inside of the bladder is damaged. Normally this layer protects the bladder from the acids and toxins in the urine and prevents bacteria from adhering to the bladder wall.
There may be other co-factors as well including neurological, inflammatory and auto-immune aspects, which may dictate different forms of treatment.
Treatment of IC requires the help of a urologist, preferably one who is experienced in treating IC. A natural substance known as dimethyl sulfoxide (DMSO) is the most common treatment used. DMSO is a liquid anti-inflammatory agent instilled in the bladder through a catheter. The patient holds the medication in her bladder for up to a half an hour. Approximately 50 to 90 percent of those with mild to moderate interstitial cystitis get improvement with DMSO.
Some women have been helped by very low doses of elavil (an antidepressant medication) in the range of 10 to 40mg a day, usually taken at bedtime. In these low doses, the drugs help by blocking pain, calming bladder spasms and reducing inflammation.
In clinical trials, the anti-histamine known as hydroxyzine has been shown to improve IC symptoms, especially those with a history of allergies, migraines and irritable bowel syndrome.
Elmiron or sodium pentosanpolysulfate is an expensive oral medication that is believed to coat the bladder and protect it from irritants. The major side effects are diarrhea and reversible hair loss. In FDA clinical trials, 38 percent of those treated with Elmiron for three months reported improvement of their symptoms.
Dr. Ramon Perez-Marrero believes heparin (a drug that decreases blood clotting) acts like elmiron in the bladder. Since heparin is far cheaper, Dr. Perez-Marrero feels it might make more sense to put heparin into the bladder.
In his experience with severe IC, instillation of heparin into the bladder helped 40 to 50 percent of people with severe IC. Patients can be taught to self-catheterize and do the daily treatments at home for three to four months.
For women who fail to respond to any other treatment a new and pricey product known as Cystistat (R) may be helpful. Bioniche Inc of London Ontario manufactures this product (1-888-567-2028 in Canada and 1-800-567-2028 in the United States).
Cystistat is instilled directly into the bladder. It acts as a temporary replacement for the defective bladder lining. Cystistat has been approved as a medical device. It is actually a solution of sterile sodium hyaluronate, a natural substance found in the body, which acts as a binding and protective agent.
A preliminary study of 21 patients, who previously failed to respond to all other treatments, showed that with Cystistat, 70 percent experienced significant relief and 30 percent had some improvement. Further studies are underway at ten medical centers across Canada. A FDA pilot study at the New England Medical Center in Boston is underway.
New research has shown that BCG (tuberculosis vaccine) can help IC. Several studies showed that six weekly instillations of BCG into the bladder produced a 60 percent response rate when compared to a 27 percent placebo response rate. Moreover, 89 percent of the positive responders maintained improvement two years after treatment.
In my experience, it is also important to determine food allergies through an elimination diet. Foods to which a person is sensitive definitely can trigger a bladder attack. So can artificial sweeteners like cyclamates or aspartame.
Other natural methods that can be used as an adjunct to treatment include TENS or "transcutaneous electrical nerve stimulation" which means using electrical stimulation of acupuncture points to reduce pain. A minimum four to six week trial should be tried. Biofeedback, hypnosis and bladder retraining may also be useful.
Studies have shown abnormalities of the fourth and fifth lumbar vertebrae in women with IC. Chiropractor adjustment of these vertebrae may result in improvement of pain and frequency of urination.
Some have obtained excellent relief using a combination of diet, herbs, vitamins and homeopathic remedies. Chinese medicine in the form of acupuncture and herbs works well for some. Good results for all these methods depends on the supervision of an experienced practitioner who can individualize your treatment program.
A recent study showed that taking an amino acid known as L-arginine in doses of 1.5 grams per day for six months resulted in a decrease of IC symptoms.
While there is still a lot we don't know about IC, much can be done to bring the problem under control and allow a person to lead a normal life.
For more information contact the Canadian Interstitial Cystitis Society at 250-758-3207 and the Interstitial Cystitis Association in New York at 212-979-6057. ICA's website has fact sheets on all the treatments at www.ichelp.org.
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