Introduction to Interstitial Cystitis

Interstitial cystitis is a chronic pain condition causing both pelvic pain and urinary issues.

Pain is often experienced above the pubic bone, as urethral burning or any other pain/discomfort perceived to be related to the bladder.
Urinary urgency (the urgent need to use the bathroom) and frequency (going more than 8 times per day) are also hallmark symptoms.

The actual name is misleading and many leading researchers suggest using more accurate terms like “bladder pain syndrome.” Cystitis is the medical word for inflammation of the bladder, which is actually not present in the vast majority of IC patients, and “interstitial” also refers to the lining of the bladder. This term was coined almost 150 years ago, when we knew almost nothing about the condition.

It’s incredibly important to note that 90% of patients diagnosed with IC have no discernable bladder lining issues.

We also need to note IC is a “condition”, not a “disease” – it’s not something that is going to inevitable get worse (degenerative) and can absolutely get better.

In reality, IC is a complex interaction between the brain, pelvic floor muscles and bladder, and often the bladder is an “innocent bystander” in a larger issue.

The good news? Thousands of people with IC live healthy, pain-free lives, and so can you!

IC is a Diagnosis of Exclusion

It’s also important to note interstitial cystitis is a diagnosis of exclusion – there’s no specific test or procedure that “proves” you have IC.

In fact, the definition of IC is basically just a description of your symptoms. It says nothing about the true underlying reason for your symptoms.

Do I really have IC?

Many patients wonder “do I really have IC?” The definition is so broad many people can be diagnosed with the condition, but often it leads patients down the wrong road of the “IC Diet” (more on that later) and exclusively bladder-focused treatments, instead of a more holistic approach

So what is IC?

The easiest definition of interstitial cystitis is pain that feels somehow related to the bladder accompanied by urinary symptoms without any other known cause.

It’s important to realize it’s not just about the bladder, but the brain (where pain and urinary urgency are processed) and the pelvic floor muscles (which are often a major driver of symptoms).

Symptoms of Interstitial Cystitis

The defining symptoms of interstitial cystitis are pain or discomfort perceived to be related to the bladder and urinary issues. For many people IC feels like a urinary tract infection (UTI).

Pain with Interstitial Cystitis

Pain with IC can manifest very differently in different patients. Here are some of the ways bladder/pelvic pain can be experienced:

Suprapubic pain: Pain centered just a few inches below the belly button (and directly above where the bladder sits). This may be so tender even the pressure of wearing pants can cause additional pain
Urethral burning: A burning sensation in the urethra where urine exits the body, this can occur at any time but most often during or after urination
Bladder pain: This can be intense, localized around the bladder and described as a twisting knife or ground glass

Urinary Symptoms with IC

The second hallmark symptom of interstitial cystitis is urinary issues. These include:

Urinary Urgency: The sudden and powerful need to urinate (even if you reach the toilet and realize you really didn’t have to go). When the pelvic floor muscles are irritated, it can even be difficult to start a stream sometimes!
Urinary Frequency: Defined as urinating more than 6-8 times daily, urinary frequency obviously accompanies urinary urgency. A good rule of thumb is if you’re urinating for less than a count of 10, your bladder wasn’t truly full.
Nocturia: Having to wake at night to go to the bathroom. Waking once at night to use the bathroom is considered normal in pregnancy and in seniors, but otherwise we should not have to wake up to use the bathroom.
Urinary Hesitancy: The inability to start or maintain a urine stream. This generally occurs because the pelvic floor muscles are overly tight and irritated and they have to relax in order to allow urine to leave the body. This can lead to the extremely frustrating experience of urgently having to use the bathroom but then getting to the toilet and finding it hard to actually go.

Additional IC Symptoms

There are many other symptoms that can manifest with IC that aren’t part of the diagnosis (but can be extremely impactful to our daily lives). These are often due to pelvic floor muscle issues rather than any relation to the bladder, and include:

Low back pain: The pelvic floor muscles that control urination are secondary stabilizers for the low back. They can radiate pain to the low back themselves, or long-term low-back pain can actually be a major driver of IC symptoms (though this often is neglected by the medical community who aren’t familiar with IC).
Painful intercourse: Similarly, the pelvic floor muscles control intercourse. When they are irritated with IC, intercourse and sexual activity (for both men and women) can be painful. These muscles have to relax and contract in rapid succession during intercourse, so this is often one of the first symptoms noticed.
Hip, groin or tailbone pain: Like low back pain, pain in these areas can be contributing to overall IC symptoms. They may predate an IC diagnosis and be a driving factor or be more of a symptom of the overall issue. Either way, they need to be addressed for lasting relief.
Incontinence: When the pelvic floor muscles are overly taxed and unable to perform their normal function of holding back urine with IC it can cause incontinence. This is not a matter of the muscles being too weak, but instead being overly tight and unable to perform their normal jobs.
Prolapse: Another common symptom of pelvic floor dysfunction, prolapse results in a feel of heaviness or pressure in the pelvic region and again results from the pelvic floor being unable to successfully support the pelvic organs in addition to other responsibilities.
Constipation and Bloating with IC: Bowel issues are also common with pelvic floor dysfunction and can often cause or exacerbate IC symptoms.

Medical Tests for IC

Cause of Interstitial Cystitis

Unfortunately there’s no definitive cause for IC. We actually know more about what doesn’t cause IC. This can be a stumbling block for both patients and their providers, and there’s a lot of misinformation out there.

What we do know is that IC is complex and multi-factorial. If there was a “simple” answer, we would have found it in the past decades of research.

What Doesn’t Cause IC

Infection – By definition, interstitial cystitis is not caused by infection. This has been a persistent myth over almost 80 years. Long-term antibiotic use with IC has been found to be ineffective and is specifically not recommend by the American Urological Association.

This myth has been revived in recent years with advances in urine testing (which are fantastic).We’ve discovered that – like the bowels, vaginal canal, and more – the bladder has a natural microbiome of bacteria.

We all – whether we have symptoms or not – have 20+ strains of bacteria in our urine. Unfortunately this discovery has caused many to return to treating IC with long-term antibiotics in search of a “simple” answer to IC. While there may be a small fraction of patients mis-diagnosed with IC who have an unfound infection, it is certainly not the underlying cause for IC.

Bladder Lining Issues – While a small percentage (about 10%) of IC patients do have bladder lining problems (Hunner’s lesions), researchers from Stanford demonstrated more than 40 years ago 90% of patients with IC have no discernable bladder lining issues.
Autoimmune disorder – IC is definitely linked to autoimmune issues like allergies, but despite a lot of research it doesn’t appear it’s actually caused by an autoimmune issue and many people with IC do not have associated allergies or autoimmune issues.

Ultimately, we may never have a perfect answer as to the cause(s) of IC. It’s likely a complex dynamic between the pelvic floor, brain and bladder. But that doesn’t mean we can’t successfully treat the condition and focus on the things we do know!

History of Interstitial Cystitis

Understanding the history of IC is important because it’s the cause of many of the persistent myths surrounding interstitial cystitis.

The condition was first acknowledged in the early 1800s and thought to be caused by a ‘bladder tic’ or a nerve problem.

We got the term “interstitial cystitis” in 1876, with the assumption there was inflammation of the bladder lining causing the condition.

The next progression in the field was the discovery by Dr. Hunner in 1914 of ulcers in the bladder that now bear his name (Hunner’s lesions or ulcers). This bladder-lining centric approach dominated treatment for more than 50 years.

In fact, many in the medical community dismissed IC patients with “women’s hysteria” well into the 1970s (and even today). Textbooks taught it was the result of a masochistic woman having a “destructive need in the female, to suffer and to ‘have trouble with’ her genitourinary apparatus.” Urology, vol 3, Meredith F. Campbell (1970)

Finally, in 1978 researchers from Stanford proved that 90% of patients with IC symptoms did not have Hunner’s lesions or any discernable issues with the bladder lining.

A formal definition for IC wasn’t even created until 1987 and the first guidelines on IC were published by the American Urological Association in 2011.

We’ve come a long way in the last twenty years as the pace of research and clinical knowledge has dramatically increased; unfortunately many medical practitioners aren’t always current on the most up-to-date IC research and may be still misled by these past mistakes in treating IC.

How Many People Have Interstitial Cystitis?

Interstitial Cystitis Phenotypes

For years researchers have been working to create sub-categories of IC patients, since it’s clear there’s no “one IC experience.”

This research is definitely a step in the right direction, though so far it hasn’t yielded clinically relevant information and we always caution patients against reading too much into their “phenotype.”

Several different phenotyping strategies have been proposed, but all of them are the result of trial and error so they can’t actually guide what treatments would be best.

The other issue is that almost every patient falls into 3 or more “phenotypes” in the category, which means they aren’t overly helpful.

Really these help us acknowledge that a holistic, multi-disciplinary approach is extremely important, but we don’t want to overly focus on our “phenotype” or neglect other possible areas of helpful treatment.

Interstitial Cystitis Diet

One of the first things anyone diagnosed with IC reads or is told is about the “IC Diet.” Dietary triggers can flare or exacerbate symptoms, but they are also extremely misunderstood.

There’s no “IC Diet” everyone should follow

Everyone with IC is unique. Some people have no dietary triggers at all, while others are highly sensitive.

Most people are in the middle, sensitive to a relatively small handful of foods and beverages.

There is no “IC diet” that everyone should follow, it’s all about identifying and avoiding your individual triggers.

Most common IC trigger foods

The most common triggers foods include:

Alcoholic Beverages
Caffeine
Coffee and Tea
Citrus fruits and juices
Tomatoes
Exotic and spicy foods
Artificial sweeteners

The gold standard for understanding your unique trigger foods is an elimination diet to actually determine 1) how sensitive you are to dietary triggers and 2) what your triggers actually are.

Interstitial Cystitis In Men

A huge myth about IC is it doesn’t affect men. In fact, men are almost as likely as women to experience IC symptoms.

However, they’re more likely to not receive an IC diagnosis. Often they are diagnosed with chronic prostatitis (which typically has nothing to do with the prostate) instead. The symptoms and treatments of chronic prostatitis are nearly identical to IC, and most researchers believe them to either be identical or closely related diagnoses.

All of the same principles, treatments, and information apply to men as well as women.

No medical test can diagnose IC; generally they are just ruling out other possibilities. Never be afraid to ask your physician why a certain test is being performed; they should be able to clearly explain the benefits of the testing they are recommending.

Urine culture or dipstick test

One of the first tests usually performed, as IC is often suspected to be a UTI because of similar symptoms. Sometimes IC can actually start as a UTI where the symptoms don’t resolve after the bacteria are gone. Other times these are ‘phantom infections’ where you’re testing negative for bacteria but are still given antibiotics.

Cystoscopy for IC

A cystoscopy is when the bladder is filled with liquid a small camera is inserted through the urethra to examine the bladder. This test is not required to diagnose IC, but often used to check for Hunner’s lesions or rule out other possibilities like bladder cancer. It can certainly flare up symptoms, as it irritates the urethra and pelvic floor muscles that control urination (requesting a child-sized catheter or medication can help).

Urodynamics for IC

Testing how the bladder and urethra function, this determines how rapidly the bladder empties, the residual urine in the bladder and urethral pressure. This is an uncomfortable and difficult test, and this procedure rarely adds value to your IC journey (unless your physician has a very specific reason for ordering the test).

Microgen Testing for IC

An advanced urinalysis test far more sensitive than a traditional urinary culture or dipstick test. This test will find bacteria in the urine, which is naturally present for everyone. As of now, we have no evidence the bladder cultures are any different for people with IC and without bladder pain, so simply finding bacteria in the urine should not indicate the need for long-term antibiotics without other evidence of an actual infection.

Potassium Sensitivity Test for IC

This test is ineffective and cruel and specifically is no longer recommended by the American Urological Association. If your urologists suggests this test, we would definitely recommend a second opinion from someone who is current on the research. In this test a known bladder irritant is inserted into the bladder. This is extremely painful for almost everyone (people who have IC and those who have no symptoms), doesn’t tell us anything and is completely unnecessary.

Interstitial cystitis affects far more people than most medical professionals ever assumed – almost 12 million in the United States alone, or about 1 in 20 people.

Many people struggle for years, through multiple doctors, without ever finding a true diagnosis. One survey showed almost 90% of people with IC symptoms had not received a formal diagnosis.

Another myth (See the Myth-Busting Section) is that IC is a condition primarily affecting women. In fact, men are almost as likely to experience IC symptoms, but far less likely to be given an IC diagnosis (because of the persistent myth IC only affects women!).

IC symptoms can crop up at any age, and recent research demonstrates it often starts in the 20s or 30s – earlier than most practitioners are looking for IC symptoms. It may take years or decades for a true diagnosis.