Below are the questions most frequently asked about IC. Contact us with your questions by email or through the ICA Question Corner.
Also, check out the common IC terminology and the results of the online surveys, which are snapshots of the knowledge, beliefs, and experiences of our readers on key issues.
There is no definitive diagnostic test for IC. Hydrodistention, while useful in the diagnosis, misses IC approximately 10% of the time. To diagnose IC, doctors evaluate symptoms, perform tests to rule out other conditions, and provide a diagnosis of IC based on symptoms and expert judgement. If you have symptoms of IC and no other bladder problems (no stones, acute infection, etc.), a diagnosis of IC can be made with or without performing a cystoscopy with hydrodistention. Also, if you have been diagnosed with IC via hydrodistention, there is no need to have repeated hydrodistentions done unless you and your doctor determine that they help your IC symptoms.
There are a few steps you may want to take:
1. Ask you current doctor to treat your symptoms. Printing out the list of treatment options from the ICA website and giving it to your doctor may help spark the discussion about potential therapies to treat your symptoms.
2. Send a written request to your previous doctor, the one who made the diagnosis, and ask to have your records sent to your new provider.
3. Let us put you in touch with healthcare providers in your area who treat IC. Complete the Healthcare Provider Registry request form.
Yes. There are two types of IC: (1) Non-ulcerative IC and (2) Ulcerative IC (Hunner's patches or ulcers). Read more about the different types of IC.
The Multidisciplinary Approach to the Study of Pelvic Pain Research Network, sponsored by the National Insitutes of Health (NIH), is further investigating IC and the different subtypes of the condition.
Because IC symptoms vary from patient to patient, there is no single "best" treatment that will work for everyone. IC patients respond to various treatments differently. It sometimes takes a period of "trial and error" before just the right treatment or combination of treatments is found. The best treatment strategies use a combination of therapies. It is also extremely important to recognize that medicines may take time to work.
Read an overview of treatment options and review the ICA Treatment Guidelines. Learn about self-help (diet, bladder retraining, and over-the-counter products), oral medicines, bladder instillations, electrical nerve stimulation, and surgery.
Urine cultures of IC patients are typically negative, meaning that bacteria cannot be found. Some theorize that IC may be triggered by an initial bacterial infection, or that bacteria are somehow connected with the disease. Some IC patients have a history of recurrent UTIs prior to developing IC. However, many IC patients have no history of UTIs. No evidence of bacteria or viruses in the urine cultures or bladder biopsies of IC patients has been found.
IC patients can experience a UTI in addition to suffering from IC. This will require treatment with antibiotics. Patients who do experience occasional UTIs may need further urological evaluation to seek a cause. Since UTIs can have such a negative impact on the symptoms of IC, it is important to treat the UTI as soon as it is found. To prevent UTIs, techniques such as antibiotic prophylaxis (taking low doses of a given antibiotic to prevent infection), and hormone replacement therapy (in post-menopausal women) can sometimes be helpful.
In the majority of IC patients, IC is not a progressive disease. There is little evidence to suggest that IC symptoms and characteristics of IC pain tend to worsen with time. It is thought that the earlier a diagnosis of IC is made, the better the chance of treatment response. For many IC patients, symptoms tend to wax and wane, and some IC patients experience remissions for extended periods of time. In a small percentage of patients, IC can worsen rapidly, causing the bladder to decrease in size, reducing its ability to hold a normal volume of urine.
Many IC patients (men and women) have problems with pain -- before, during and after sexual intercourse. Loss of sex drive can also occur in IC patients. Learn more about IC and intimacy.
No. It is important, however, to completely exclude bladder cancer when making the diagnosis of interstitial cystitis. Your urologist will look for cancer when you undergo cystoscopy with hydrodistention to help diagnose IC. Urine cytology (the study of cells within the urine) and bladder biopsy may also be needed to completely rule out bladder cancer.