Are You Positive It's A Bladder Infection?

A recurrence of bladder infections or urinary tract infections may in fact be something completely different. Ask your doctor if he or she is knowledgeable about the bladder disease Interstitial Cystitis.

What exactly is interstitial cystitis? First of all, one must fully understand what interstitial cystitis is not. It is not a disease causing incontinence. It is not a weak bladder. And it is not a figment of a patient's imagination.

The onslaught of the disease is typically mistaken for something else""a bladder infection or urinary tract infection, but the prescribed antibiotics never quite alleviate all the symptoms. Within weeks or months at best the symptoms return. Compounding the problem is the frequency with which the patient has to urinate, followed by the inability to completely empty her bladder. Sometimes doctor after doctor diagnoses that which has already been treated""bladder infections and UTI's. They eventually question illnesses like depression and Post Traumatic Stress Disorder. It is not unusual for a patient suffering from Interstitial Cystitis to be told her symptoms are "all in her head".

Determined not to listen to these statements as a physician's excuse for failing to diagnose her symptoms, one thirty-five year old woman explored other options in seeking a diagnosis and subsequent treatment. A complete fluke led her in the right direction.

This patient had suffered enough. Already seeing a psychologist for her clinical depression, she conferred with him regarding the doctor's suggestion that her symptoms were imagined. A resounding "No" from her therapist and further conversation sparked a memory in this sharp doctor's mind.

Another of his patients had suffered similar symptoms ten years before and had only recently been diagnosed. For years she endured excruciating pain and the need for frequent urination. Subsequent research had directed this patient to Dr. Gramman Sant at New England Medical Center in Boston, Massachusetts.

Sant, considered to be the national expert on Interstitial Cystitis, was not only practicing medicine in the field of urology, but was also actively pursuing studies on this disease. Interstitial Cystitis, or IC as it is called, is a deterioration of the bladder's lining. Leaving the bladder raw, the pain is caused from the acid in the urine. What starts as mild pain and burning will often become debilitating. An autoimmune disease, IC is believed to be related to such diseases as fibromyalgia and lupus.

Although both men and women are known to have the disease, it is far more prevalent in women. The disease cannot be accurately diagnosed without a procedure called a cystoscopy. A cystoscopy involves distending the patient's bladder to full capacity in order to get a clear image. A diagnosis is made when the presence of Hunners Ulcers denotes the presence of Interstitial Cystitis. This procedure is performed in a hospital under general anesthesia.

Many patients express euphoric symptoms over simply being diagnosed. An intern at New England Medical Center confirms that this kind of reaction is typical.

There are a few options for attempting to relieve the symptoms of IC, although there is as of yet no cure. The instillation of a solvent called DMSO (dimethyl sulfoxide) is supposed to coat the bladder, providing relief from the pain. It doesn't work in all cases, but if effective the relief can last up to six months.

A procedure of a bleach-like chemical called Chlorpactin is surgically instilled, in an attempt to burn the remaining bladder lining. The hope is to trick the immune system into action, and generate a re-growth of new bladder lining tissue.

The drug Elmiron is known to be effective in a fairly high percentage of cases. The biggest drawback to this drug is cost. Many IC patients have not worked for some time due to their pain, and subsequently often have no medical benefits or prescriptions coverage.

Atarax is an antihistamine that provides relief to some IC patients. The anti-depressant Elavil contains some strong pain properties, and is another option for attempting to alleviate the pain. Other painkillers used are Tylenol with Codeine, Percocet, and in extreme cases the drug Methadone is prescribed. While Methadone often kills most of the pain, it also causes serious side effects such as extreme drowsiness. Many patients are unable to drive while taking this drug. Methadone also comes with a stigma attached, as it is commonly associated with being a treatment for heroin patients.

Some patients respond initially to the DMSO. Occasionally they will experience a remission lasting up to six months. However often upon coming out the remission, the symptoms are worse than ever. The Elmiron produces similar results in some patients, but also loses its effectiveness with time.

Another option to distract the patient from the pain is a TENS Unit. Transcutaneous Electrical Nerve Stimulators are designed to transmit a "shock" when sensing a tightening associated with pain. They sometimes help manage the pain rather than relieving the pain.

The Interstitial Cystitis Association (ICA), while making it clear they do not dispense medical advice, is the largest (and perhaps the only) support system for sufferers of IC in the United States. Often connecting patients with one another as a means of support, they also help raise money to fund research and educate people on the atrocities of this disease.

In March 2000, the ICA gave Public Witness Testimony at the U.S. Capitol before the House Appropriations Subcommittee on Labor, Health, and Human Services and Education. In an effort to encourage the support of Congress in funding an additional $2.5 million over last year's budget for IC research at the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK), 25-year old Allison Gollin from Philadelphia gave the following statement:

"It was the summer of 1997 when I first realized something was drastically wrong with my lower abdomen. The pain of the illness I would come to know as Interstitial Cystitis had taken over my life. Day in and day out I had an overwhelming urge to urinate and a pain in my pelvic region so sharp it nearly took my breath away. Imagine a shoe constantly crushing shards of glass inside your lower belly, and you have a picture of what an IC patient feels daily."

Since then, IC patients have been encouraged to participate in the political process to promote Federal funding for IC research by accessing the Cyberadvocacy page at the ICA's Web site

The outcome of the funding decision is still pending.

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