What is Interstitial Cystitis?

Pelvic pain
March 5, 2019
Nicole Cozean
Women_with_Intersitial_Cystitis_or_Endometriosis_holding_heat_pad_to_stomach

Interstitial cystitis (IC) is a term that describes long-term pelvic pain and urinary symptoms like urgency and frequency.  It is most often compared to the feeling of a urinary tract infection (UTI), though it is not caused by a bacterial infection.

A more formal definition is that IC is characterized by pain or pressure 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.

Other names may be given for interstitial cystitis, including bladder pain syndrome (BPS) or painful bladder syndrome(PBS).  

The underlying cause of interstitial cystitis is unknown, but it certainly involves a complex interaction between the bladder, pelvic floor muscles that control urination, and the central nervous system.  

About 10% of patients with the symptoms of interstitial cystitis have damage to the bladder lining, known as Hunner’s ulcers.  Additionally, more than 90% of patients with IC are confirmed to have pelvic floor dysfunction causing or contributing to symptoms.

While the Urological Society of Australia and New Zealand hasn’t published their own guidelines on interstitial cystitis, the most recent and comprehensive review of the condition was published by theAmerican Urological Association in 2014.

Incidence of IC

One of the most damaging myths about interstitial cystitis is that it is rare.  This makes it harder to get a correct diagnosis and delays effective treatment. The most recent, population-based studies on the incidence of IC were conducted in the United States by the RAND corporation, and found about one in twenty people have the symptoms of interstitial cystitis.

In Australia, that would equate to about 1.3million people living with IC.

Another myth is that IC is almost exclusively a women’s condition.  In fact, the most recent population-based studies found that the condition is almost as common in men (4.2%) as women (6.5%). Many men are also diagnosed with chronic prostatitis, when research suggests that the majority of these cases could or should be diagnosed as interstitial cystitis.

Finally, it has sometimes been reported that IC typically manifests in middle-aged or older women.  This myth may be due to the length of time it often takes patients to be formally diagnosed, but many begin experiencing symptoms in their 20s or even earlier. Interstitial cystitis shouldn’t be discounted as a possible diagnosis because of age.

Treatment approach

IC is best treated or managed with a combination of different treatments and a multi-disciplinary approach.

A single medication or procedure is often not enough, but by combining different options and a trial-and-error approach, symptoms can be eliminated or greatly reduced.

Experts suggest working from the most proven and most conservative treatments first. While Australian  The most comprehensive guide to treatment was published by the American Urological Association, which grouped treatments into six ‘Lines’.  

The first line consists of patient education, changes in lifestyle and diet, and stress reduction.  The first line of medical treatments recommended includes physical therapy (considered the most proven treatment for IC), oral medications, bladder instillations, and pain management.

Physical Therapy for IC

The American Urological Association Guidelines consider physical therapy the most proven treatment for interstitial cystitis, and studies have shown it has benefited about 85% of men and women with IC symptoms.  

In a study conducted at our clinic, PelvicSanity, patients saw significant improvements in pain, symptom bother, and how much symptoms limited them on a daily basis.

Dealing with IC

So what should you do if you’ve been diagnosed, or suspect that you might have, interstitial cystitis? The first step is education – there are some great resources out there that can be an important guide in your journey.  The Interstitial Cystitis Association and Interstitial Cystitis Network .

The next step is to assemble a great medical team.  

This should certainly include a physical therapist who is familiar with the condition, and a physician (often a urologist or urogynecologist). Other important members can be a pain management specialist, a nutritionist (especially if you find you’re highly diet sensitive) or an acupuncturist.

Education for IC

We’re so excited to be doing the first continuing education course on interstitial cystitis in Australia!  We’ll be teaching in Sydney on August 24th and 25th, a two-day course about physical therapy techniques for interstitial cystitis and helping patients with medical management.  

Healing journey

Resolving symptoms of IC isn’t easy, but it’s certainly possible.  The first line of the Interstitial Cystitis Solution is

Thousands of people with interstitial cystitis live healthy, pain-free lives, and so can you.

There is so much that can be done, even if you’ve had symptoms for years.

Additional resources

·      Interstitial Cystitis Overview (printable)

·      The Interstitial Cystitis Solution -available in Australia and NZ here and in the USA here

·      Patient groups include the Interstitial Cystitis Association (ICA) and the IC Network, which both have fantastic resources for patients.

·      The AUA Guidelines for IC

·      IC Flare-Busting Plan

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