Interstitial Cystitis: The Long Road to Diagnosis

In my last article I discussed Interstitial Cystitis or painful bladder syndrome, its causes and symptoms. This article will discuss how to get a proper diagnosis. Since researchers are not sure what causes IC, the diagnosis is often missed entirely or misdiagnosed. Women may go misdiagnosed for as long as 7 years. This is how serious the misdiagnosis problem is.

Risk Factors: This condition seems to occur in women who already have IBS, Fibromyalgia, Vulvodynia or vulvar syndrome, Endometriosis, sensitive skin or spasms in the pelvic floor muscle. Make sure you let your doctor know you have these health problems.

Why is there such a problem diagnosing IC. When women seek medical help they think they have a common bladder infection. When the test comes out negative for a bladder infection they are still given a round of antibiotics even though there is no sign of infection present. Many doctors do not know what else to do. The woman goes home, takes the antibiotics, gets little or no results, then goes back to the doctor still in pain. The urine test again comes out negative but he gives her a different antibiotic. He is still looking for a common bladder infection despite the lack of bacteria in the sample. After several visits to a general physician that result in unsolved pain, he sends her to a specialist that may or may not figure out that she may have IC. You can also have IC and a common bladder infection at the same time which really confuses the issue. Antibiotics may work to some degree but not for long. This is the viscous circle that most women go through with IC. This cycle results in many years of suffering.

How then is IC diagnosed? IC/PBS is diagnosed after repeated visits to doctors that result in negative urine tests. They may take a catheterized sample of your urine because a standard urine test can be contaminated. The doctor then may require many lab tests (cat scan, MRI) and physical exams that rule out other health problems such as kidney stones, cancer, obstructions, and other possible explanations for your pain.

No SpecificTest for IC/PBS: There is not a specific test that identifies pelvic bladder syndrome. Its symptoms confuse the patient and the doctors because they mimic other bladder problems. A physician will look at your health history, perform a physical exam, run a urinalysis to rule out infection, a urine culture to determine why antibiotics are not working on your pain, and cytology. If you don't have health insurance, you may not have the money to get this diagnosed. Even with insurance, there are some pretty steep patient costs on these tests. Since this is the case, women suffer for lack of money to go through all these exams and expensive tests. If you are on Medical, they may refuse to fund the needed tests. Most GPs are not familiar with IC/PBS.

Patient History Important Key to Diagnosis: Most doctors who are educated on IC/PBS feel the patient history is one of the most important tools in diagnosing IC/PBS.

Symptom Markers For IC/PBS: consistent, chronic pelvic pain, urinary urgency and frequency. When you then add in the other common symptoms such as pelvic and bladder pain with negative urine results for infection; antibiotics that have no effect on the bladder pain; bladder pain after sexual intercourse; and bladder pain that occurs after drinking tea or coffee, the doctor then has a good basis to suspect IC.

Find a Doctor Educated and Experienced with IC/PBS: He must be educated on the research concerning IC. Since many women who have IC also have IBS and Fibromyalgia, you need to inform your doctor of these other health conditions. A urologist may not normally think IBS or Fibromyalgia is important to his diagnosis when you are complaining of bladder pain. He may not get the connection without your pressing the issue. The problem is most women do not realize either that all of these health conditions and symptoms are related and connected, so they don't give the doctor this information.

The Potassium Test: This test is used to diagnose IC. They inject both a water and potassium solution into your bladder. In a healthy bladder, the lining protects against acid urine and potassium in the urine. In IC , the lining is defective. When the potassium is injected into the bladder, they assess your pain level. If you are in severe pain, that supports the IC/PBS diagnosis. After researching this article, the test is not always conclusive to diagnose IC, is extremely painful, and the effect of the test can last for weeks afterward. It's like putting scalding water on a sunburn. Most women were not informed on how painful the test would be and that its effects could last for days or weeks afterward. Many doctors feel the test is not conclusive, unnecessary, and extremely painful. They feel the patient health history in itself, lab tests, and physical exam is sufficient with the cystoscopy to diagnose IC/PBS

Cystoscopy Under Anesthesia: This is a test where a tube with a camera called a cystoscope is inserted into your urethra and up into the bladder to view the urethra and bladder wall. In IC, there are often ulcers in the bladder lining which show up with this test. This test also rules out other possible causes for your pain such as bladder stones, bladder cancer, obstructions, and abnormalities. This test is much better at diagnosing IC . This test can miss the IC if the patient is in the early stages of the disease where the ulceration has not yet occurred. The ulcers are called Hunner's ulcers. In the early stages of IC both the potassium test and cystoscopy may not show results. The damage to the bladder wall and the ulceration may not be present until the later stages of the disease.

Please research diagnosis of IC/PBS before you submit to these tests. I have provided links to get you started. Always research your health problem, the tests, the treatment before you submit yourself to the program.

References:

Interstitial Cystitis Network, http://www.ic-network.com/forum/showthread.php?t=60395

Interstitial Cystitis Association, http://www.ichelp.org/Page.aspx?pid=748

http://www.ic-network.com/forum/archive/index.php/t-60395.html

http://www.arhp.org/Publications-and-Resources/Clinical-Fact-Sheets/Understanding-ICPBS

http://www.ichelp.org/Page.aspx?pid=748

www.webmd.com/a-to-z-guides/cystoscopy-16692