This blog is part one of a series of blogs covering this complex pelvic pain condition. Read further as we bust the myths on what interstitial cystitis (IC) - also known as painful bladder syndrome (PBS) - is, what the research says to do about it, and what treatments actually work.
This part one blog will cover:
What is Interstitial Cystitis?
Interstitial Cystitis / Painful Bladder Syndrome has been found to affect around 12 million adults in the United States alone, which is around 5% of the population. The definition of IC has been defined by the American Urology Association (AUA) as:
"An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptom(s) of more than six weeks duration, in the absence of infection or other identifiable causes." AUA 2022.
In easier to understand terms, it is pain surrounding the bladder and lower portion of the system (such as the urethra) without a clear cause, such as a UTI. It is the "without a clear, identifiable cause" portion of the explanation that leaves a lot of people unfortunately feeling hopeless. I would argue that the way we have treated IC in the medical community has lead to the perceived idea of this being a hopeless case of chronic pain, despite the research and evidence to prove otherwise.
If you would like to read the American Urology Association's guidelines on IC, you can find it here.
What are the symptoms of IC?
While the symptoms do vary from person to person, the most common symptoms are:
Suprapubic pain
Frequency of urination
Urgency of urination
Nocturia (getting up in the middle of the night to void)
Other symptoms that have been recorded are:
Slow stream of urination
Incomplete bladder emptying
Urge incontinence (leaking as you try to hold your bladder on the way to the bathroom)
Stress incontinence (leaking with high pressure situations like sneezing and running)
Pain can be seen in more than just the suprapubic area, especially since this condition is a chronic pelvic pain condition. Pain can be seen throughout the pelvis, in the hips, and the low back for example.
Misconceptions about what IC actually is:
If you re-read the definition of IC that is currently set by the AUA, it is rather groundbreaking. This likely isn't your first time reading about IC, so you have probably seen other websites refer to this pain and condition as a bladder wall issue and that is where the history of the name comes from. Interstitial refers to in-between cells, and cystitis refers to bladder inflammation. Essentially, the history of the name comes from the fact that for a long time we thought IC was inflammation of the bladder wall and lining.
The AUA is redefining this as pain perceived to be related to the bladder. This means that it is not 100% pain caused by the bladder or the bladder wall.
So is this a bladder condition, or is it a pain condition? IC is actually a 'chronic' pelvic pain condition with symptoms such as painful urination and burning around the bladder, and NOT an actual bladder condition. This is fantastic news, as that means symptoms can be alleviated and improved, and sometimes even completely resolve.
This also means that this condition is not degenerative. That means this condition does not just inherently get worse like other degenerative conditions like Parkinson's or Alzheimers (for example) do.
You might think, what is the big deal in this distinction? Proper understanding of what is going on is imperative for successful treatment. If you are being seen, for example, by a urologist who does not listen to their own association and research on this condition and is instead treating you with a host of medications shown to be repeatedly unsuccessful, then you are going to walk away feeling defeated.
Diagnosing IC
Depending upon which medical provider you see in your quest to solve your pain, you are likely going to get different answers or different diagnoses. For example, if you see a gynecologist (if you have a vulva) for your pain, you may walk away with the diagnosis of vulvodynia.
In fact, as of 2023, we have seen that only 10% of individuals with IC get a proper diagnosis.
In order to get a medical diagnosis of interstitial cystitis, you may undergo certain medical tests such as a cystoscopy, urodynamics testing, post-void residual test, and urinalysis. It is important to know, though, that not every test is necessary or important to get a diagnosis. It is important to feel a sense of agency in your medical care, and it is worth asking why you are undergoing a test and what it will actually show.
According to the American Urological Assosication, in order to diagnose IC your provider should:
Get a basic history of your pain and symptoms, and perform a physical assessment as well as a laboratory assessment to rule other diagnoses out, such as an infection.
Establish a baseline of your pain and symptom levels in order to track how treatments are objectively helping you.
Cystoscopy and / or urodynamics are a good adjunct in complex cases, but are not a requirement for the diagnosis.
Essentially, IC is a diagnosis of exclusion. You cannot rule it in with a test, you just rule other diagnoses out.
TLDR
Interstitial Cystitis is also known as Painful Bladder Syndrome, and is a chronic pelvic pain condition. It is commonly misunderstood as a bladder condition, but the pain does not originate from the bladder cells as previously thought. The American Urological Association refers to it as a pelvic pain condition perceived to be related to the bladder in the absence of another cause (such as an infection). Since this is a diagnosis of exclusion, there is not a gold standard way to test for this and it greatly depends on the medical providers you see.
The most common symptoms are suprapubic pain, urinary urgency, urinary frequency, and nocturia, but this list is by no means comprehensive.
References:
Berry, Sandy (2023). RAND Interstitial Cystitis Epidemiology Study (V1) [Dataset]. NIDDK Central Repository. https://doi.org/10.58020/f5qd-z817
Clemens JQ, Erickson DR, Varela NP, Lai HH. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome. J Urol. 2022;208(1):34-42.
Caroline Gamwell, DPT is a Doctor of Physical Therapy specializing in Pelvic Health and Orthopedics. Dr. Gamwell earned her doctorate at Northwestern University in Chicago, IL with a focus on chronic pain rehabilitation. Dr. Gamwell owns Worth It PT, LLC, a boutique physical therapy practice based in Denver, CO focusing on all things pelvic health. She holds post-graduate certifications in Pelvic Floor Physical Therapy, as well as in treating pregnant and postpartum athletes. Her strongest passions lie with helping others conquer their chronic pain and achieve their intimacy goals.