What is Interstitial Cystitis (IC)?
If you’re struggling with urinary frequency (need to urinate often), urgency (needing to urinate suddenly because of pain), pressure and/or pain, you could have interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs).
Interstitial cystitis/bladder pain syndrome (IC/BPS) officially defined as “An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.” (1) In other words, your urinary symptoms may be interfering with your sleep, your work, your sexuality and your ability to live normally.
IC/BPS is no longer considered an “incurable” bladder disease. Rather, we refer to it as a chronic pelvic pain condition because structures outside of the bladder may also be triggering these symptoms. Physicians should complete a comprehensive diagnostic workup that screens for “high tone” pelvic floor muscles, fibroid tumors, endometriosis, tarlov cysts and several other conditions which can trigger these symptoms.
One of the challenges that many IC patients face is that their bladder appears perfectly normal upon examination. This is good news. It’s time, then, to consider structures outside of the bladder as the source of their symptoms.
Is it IC? BPS? HBS
If you’re confused about the name of this condition, don’t be. Collectively, we call it Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). In Europe, only patients with Hunner’s lesions are diagnosed with IC. Patients without lesions are diagnosed with BPS. In Japan, they use the name Hypersensitive Bladder Syndrome (HBS). In the USA and on our website, we use IC/BPS. Learn more about the history and names for IC.
Types of IC/BPS
For more than a century, IC was considered a “bladder disease” and/or dysfunction of the bladder wall. In the past decade, however, researchers & clinicians have come to accept that IC patients can have problems beyond their bladder, usually in their pelvic floor muscles and/or nerves.
Two subtypes became obvious years ago.
IC: Hunner’s Lesions – Roughly 5 to 10% of patients have Hunner’s lesions on their bladder wall. This is known as “classic IC” and it is very clear that they have a bleeding, damaged bladder wall. This video should resolve any thoughts that IC is “psychological.” New research from Europe has found active virus in the urine of these patients, including the polyoma BK virus and the Epstein Barr virus.
BPS: Non-Ulcer – The remaining 90% of patients often have a normal bladder yet struggle with bladder and pelvic pain symptoms. This group of patients is often difficult to treat. Some have tight muscles or an injured bladder wall, while others are struggling with nerve dysfunction. Clearly, a “one treatment fits all approach” does not work. In recent years, researchers have been trying to create more specific and accurate subtypes
Five Proposed Subtypes of IC
The system proposed by Dr. Christopher Payne in 2015 shows the great diversity we now see in the IC patient population.(2) No wonder older research and treatment studies were so ineffective. They were putting many different types of patients into the same study.
Subtype 1 – Hunner’s Lesions – The most severe form of IC occurs in the 5 to 10% of patients who have Hunner’s lesions. These are wounds on the bladder that, when biopsied, show severe inflammation. Hunner’s lesions can be very painful, require a strict diet and specific treatments. Hunner’s lesions may be the only true bladder “disease” in the IC community and, in 2015, were linked to a rare viral infection.
Subtype 2 – Bladder Wall Injury – These patients symptoms start after a UTI, chemotherapy, bad diet, chemical exposure. Because the bladder wall has been injured, urine penetrates deeply into the tissues where it causes severe irritation.
Subtype 3 – Pelvic Floor Injury – Having a baby, repetitive pelvic trauma (bicycling, falling), car accident or fall may cause the pelvic floor muscles to tighten around the bladder, nerves and blood vessels where it can cause bladder symptoms and pelvic pain. Pelvic floor physical therapy is now considered one of the best therapies for IC/BPS and research studies have found it to be more effective than oral medications and/or bladder treatments for many patients. However, there are some patients whose muscles continue to tighten despite physical therapy. In these cases, it’s important to look beyond the muscles to the bones. Is there an underlying hip, SI, knee or foot disorder that is triggering long-term tension in the pelvic floor muscles? This is called a “mechanical dysfunction.”
Subtype 4 – Pudendal Neuralgia – These patients often have muscles so tight that they are squeezing or pressing on nerves. Known as bike riders syndrome, sitting can become quite painful. A painful arousal sensation can also occur.
Subtype 5 – Chronic Overlapping Pain Conditions / Central Sensitization Syndrome – These patients struggle with more than just IC, including: irritable bowel syndrome, vulvodynia, prostatodynia, fibromyalgia, TMJ, eye pain and more. Patients who have two or more of these conditions are diagnosed with “Chronic Overlapping Pain Conditions” which is believed to be driven by a maladaptive nerves in the central nervous system and brain. In some cases, it is hereditary while in others in is the result of injury, trauma or chronic pain. While it’s easy to focus on bladder symptoms, these patients must embark upon a program that will help to calm and “wind down” their nervous system to restore proper functioning. There is absolutely no suggestion that IC is “all in your head.” Rather, we’re talking about how nerves are physically functioning. Essential to calming pain is the reduction of anxiety and catastrophic thinking, which acts to “wind up” and increase nerve and pain sensitivity. Mind-Body medicine (guided relaxation, meditation, etc,) is remarkably effective at calming the nervous system and reducing pain throughout the body.
Prevalence & Epidemiology
Once considered a rare condition, IC/BPS affects millions of men and women around the world. In the USA alone, an estimated 3.2 to 7.9 million women (2.7 to 6.5% of women) and 1 to 4 million men have symptoms.
- The average age of onset for IC is 40 years, with 25% of patients under the age of 30.
- Up to 50% of patients experience spontaneous remissions with a duration ranging from 1 to 80 months.
- Patients with IC are 10 to 12 times more likely than controls to report childhood bladder problems.
- 50% of IC patients have pain while riding in car.
- 63% of IC patients are unable to work full time.
- IC patients have suicidal thoughts 3-4 times above the national average.
- The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.
- 52% of women with IC reported panic attacks and over 30% reported depression.
- IC patients pay twice as much out of pocket for direct medical care when compared with someone without the condition.
- Read more about the prevalence and epidemiology of IC here
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- Hanno PM, et al. AUA Guidelines for the diagnosis and treatment of IC/BPS J Urol. 2011;185(6):2162-2170
- Payne C. A New Approach To Urologic Chronic Pelvic Pain Syndromes: Applying Oncologic Principles To ‘Benign’ Conditions. Current Bladder Dysfunct Rep. Topical Collection on Pelvic Pain. March 2015
Author: Jill Osborne, MA
Revised: November 14, 2020