The "UTI" That Wouldn't Go Away

A few days later you receive a call from the doctor's office. The nurse on the phone is happy to report that there was a mistake, despite the high WBC count in your urine (which is an indication of inflammation or infection) you do not actually have a UTI. This news does not sound too good to you as you are still in pain and still urinating several times per hour. You let the nurse know that you are still not feeling well and the doctor starts you on a different type of antibiotics despite the fact that you have no infection. You finish the next round of antibiotics and still feel sick. Maybe you even have been drinking three glasses of cranberry juice a day and swallowing natural cranberry supplements.

Tales like this are all too familiar to Interstitial Cystitis patients. If you have Interstitial Cystitis instead of a UTI, antibiotics and cranberry juice may actually be making you sicker.

Most people have heard of cystitis, a fancy name for a UTI, but not everyone has heard of Interstitial Cystitis (IC). IC and plain old cystitis are very different. Cystitis is a temporary infection of the urinary tract which occurs when foreign bacteria makes its way into the urinary system. Most cases of cystitis can be cured with a solid round of antibiotics.

IC on the other hand is a chronic illness with no cure. Many people who have IC may start out believing that they have a UTI. Some of the symptoms are very similar: frequency, pain, burning. High WBC counts occur often in the urine of an IC patient as IC patients can have thin, inflamed bladder linings and spastic pelvic floors. IC patients do not have infections. IC patients have damaged bladders all the time. This is a permanent issue which the cause of is still not known. The pain an IC patient experiences is not caused by an infection or a sexually transmitted disease.

IC patients pee anywhere from once per hour up to sixty times a day. Many IC patients experience burning with urination. IC patients also can have issues with painful sex, urethra pain, vulva pain, pelvic floor spasms and more. 

The easiest way to describe the life of an IC patient to someone else is to say that having IC is like having a 24/7 UTI that never goes away.

IC is hard to diagnose. Currently, it is a disease of exclusion, meaning there is no one solid test. Some doctors diagnose using a potassium sensitivity test or a cystoscopy with hydrodistension where pictures of the bladder are taken. Other doctors will run tests for every other illness which can be causing pelvic and bladder pain and if all of those tests come back negative the patient will receive a diagnosis of IC.

Not all IC patients are the same. Some have relatively normal looking bladders while others have bladders covered in bleeding ulcers. If you are having painful urinary symptoms, it is important to find an educated doctor who will take you seriously.

Most IC patients do not get diagnosed on the first try. It is important not to give up if a doctor is dismissing you. IC bladders are often sensitive to acidic food and beverages so it can be a good idea to avoid coffee, cranberry juice and other items of this nature while waiting for a diagnosis. If one doctor accuses you of making up the pain or having a chronic UTI (even though there is no bacteria in the test) it is time for you to get a new doctor. Know that the pain is not in your head. Many family doctors or urologists who mainly specialize in the male prostate may simply be unfamiliar with the disease. If you are suffering, make an appointment with a specialist or a urogynecologist.

The more people who speak up about IC, the faster women can start being diagnosed. The worst thing you can do for your body and the IC community is to give up and try to live with the pain and agony because doctors seem not to believe you. Many women are shamed into giving up while seeking diagnosis. This is wrong and the IC community is starting to fight back.

Although there is no cure for IC, treatments are available. Since no two IC patients are the same, not everyone responds to the same treatments. You need to work with a knowledgeable doctor to find treatments that work for you. Possible treatments include oral medications, pelvic floor therapy, botox and a specialized diet.

September is IC awareness month. If you or someone you know suffers from IC or another invisible disease make sure to repost and spread the word.