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Interstitial Cystitis: Understanding What It Is, and the Interstitial Cystitis Association’s Role in an IC Patient’s Life

November 20, 2015
If you mention Interstitial Cystitis (IC) to most people, including physicians, the majority of people have no idea what you are talking about. This is alarming because IC affects between 4-12 million people, just in the U.S. alone.  The majority of IC patients are women, but both men and children can receive the diagnosis as well.  So what is IC and how do you know if you have it?

Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). IC may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain.  Currently there are two recognized subtypes of IC: non-ulcerative and ulcerative. Non-ulcerative: 90% of IC patients have the non-ulcerative form of IC. Non-ulcerative IC presents with pinpoint hemorrhages, also known as glomerulations, in the bladder wall. However, these are not specific for IC and any inflammation of the bladder can give that appearance. Ulcerative: 5 to 10% of IC patients have the ulcerative form of IC. These patients usually have Hunner’s ulcers or patches, which are red, bleeding areas on the bladder wall.  There is NO definitive test for IC, unless Hunner’s ulcers are present, which can only be found by doing an a cystoscopy, which involves inserting a camera through the urethra to actually observe the bladder lining.  Currently research is being done to find a biomarker for IC which could allow for much a quicker and much more comfortable diagnosis of this condition.

As stated.  IC has NO CURE.  This is in part due to the fact that there is not a clear understanding of what causes it in the first place. Many experts in IC believe that some sort of trauma to the pelvic floor such as surgery or frequent UTI’s may trigger the onset of symptoms. Some believe that IC is an autoimmune condition, along the same line as fibromyalgia or irritable bowel syndrome (IBS).  Other research suggests that there may be a small genetic component as well.  For most patients the cause is secondary to the treatment of IC, which is surprisingly limited.  Treatment options can include; dietary modification to protect the bladder wall from irritants, both over-the counter and opioid pain management, topical medications, physical therapy, antidepressants, antihistamines, bladder instillations, immunosuppressants, neuromodulation, and in advanced cases, surgery.  Every bladder is different, so it can take months to figure out what may work for a specific patient.  In the meantime, every aspect of an IC patient’s life can be affected.  Many IC patients find their symptoms to be so severe that it renders them unable to work or maintain normalcy in their daily lives.

This is where the Interstitial Cystitis Association (ICA) can help.  The ICA is the only nonprofit charitable organization dedicated solely to improving the quality of healthcare and lives of people IC.  We provide the latest information regarding diagnosis, treatment, research and support.  Through our comprehensive website, patients are able to find IC literate doctors, find support groups in their area, have access to webinars on topics such as intimacy, coping with pain, and even shop for IC specific literature.

We also maintain an online patient forum and provide one-on-one assistance by answering individual phone calls and emails by utilizing highly trained volunteers and staff.  None of this would be possible without the generosity of the IC community and their friends and family. The ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by IC.