But is it really Interstitial Cystitis?  

By Morgan Conner, DPT, PHRC Los Gatos

Recently, I decided to look into the confusion surrounding Interstitial Cystitis. A couple searches down a Pubmed rabbithole, I realized there was much more to it than I initially realized. In order to really make sense of what might be going on, I decided to go back to the basics and to the beginning. This blog will unravel both the basics of bladder function and the history of the nomenclature. In doing this, my hope is that you walk away better understanding what might be happening in your body.   

As promised we are going to start by talking about normal and abnormal bladder and pelvic floor anatomy and function. Let’s start at the inner layer of the bladder. This tissue is shaped by rugae, or little folds, that allow the bladder to expand as it fills with urine. These rugae are lined with mucin which protects the bladder from irritation from urine and bacteria. The next layer out is the detrusor muscle that stretches as the bladder fills. Under normal conditions, the detrusor muscle will begin to contract when there is about 200ml of urine in it. This contraction forces open the internal urethral sphincter and starts the neural cascade that sends the signal to your brain that “hey, your bladder is starting to get full, you should think about finding a bathroom soon.” As the urine passes into the urethra and down towards the external urethral sphincter, you are now voluntarily contracting so you can hold your urine while you find a bathroom. Luckily the bladder still has a little room to expand as normal bladder capacity is about 300-400ml, but as you are getting closer to that, the message getting sent to your brain changes to “GOTTA GO PEE NOW!” Once you are in a place where it is okay to void, the external urethral sphincter and pelvic floor muscles relax as the detrusor contracts to squeeze and empty the contents of the bladder. However, that nice process I just described above doesn’t always go according to plan, which might lead to problems such as urinary urgency, frequency, or incontinence. 

Next, let’s do a quick review of the history of the discovery and naming conventions of interstitial cystitis or “IC”. In the early 1800s a doctor by the name of Philip Physick first described an “inflammatory condition of the bladder with an ulcer, similar to a bladder stone.” In 1836, he decided to call this “Tic Douloureux of the bladder.” This condition was referred to as “interstitial cystitis” by Samuel D. Gross in 1876. Then in 1918, a gynecologist by the name of Guy Leroy Hunner published a study documenting the presence of an ulcer in the bladder. These ulcers would later be called Hunner’s Lesions and it would be debated whether they were fissures, lesions or ulcers. In 1951, we had a new term introduced by a physician named JP Bourque “Painful Bladder Syndrome.” This name was not intended to replace IC but instead to be an umbrella term for all disorders that cause pain in the bladder including IC. However, it was not until 1987, that the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) got involved to try to work to establish diagnostic criteria and eventual decided that in order to be included in a study, participants needed to have lesions or glomerulations. This is also when we start to see the beginnings of the splintering that is currently present with IC because at the same time, the Interstitial Cystitis Database, a multicentered research outfit, also started looking at people with IC-like symptoms but was using less stringent criteria. In 2006, the European Association of Urology revised painful bladder syndrome to Bladder Pain Syndrome to follow the naming taxonomy of organ+pain+syndrome. Then in 2009, Japanese guidelines suggest “hypersensitive bladder syndrome” as another umbrella term. As we inch closer to the present time, the American Urological association published a guideline in 2011, with a revision in 2014, defining interstitial cystitis as “a collection of symptoms, including but not limited to bladder pain, after other causes such as infections have been ruled out.” This guideline also outlined diagnostic testing guidelines and goes through first to sixth line treatment options. (we’ll talk more about these guidelines a little later on)

Alright, to review so far, we know what should happen when our bladders fill with urine, some folks have problems with bladder filling and emptying, that these care arise from the bladder or this pelvic floor or both, and the history of naming this whole thing is complicated. In addition to bladder pain, the AUA guidelines also mention urinary urgency and frequency as well as the other symptoms listed in the table below. 

The guidelines also do not recommend or require a cystoscopy for diagnosis although anecdotally I have noticed that many of my patients who have been diagnosed with IC have had a cystoscopy. During a cystoscopy, a camera is guided up into the bladder via the urethra to inspect the bladder wall. 

So, why is a cystoscopy not needed for diagnosis? We know from our history review that IC was initially thought of as a disease of the bladder lining in which case doing a cystoscopy to look at the bladder lining makes sense. However, recent studies have refuted this thinking, showing that some people with abnormal looking bladders did not have urinary symptoms and others with urinary symptoms had normal looking bladders. Furthermore, only a small subset of people (about 10%) diagnosed with IC have Hunner Lesions and bladder symptoms. Although not full hunner lesions, some people do have what are called glomerulations which are small defects in the bladder lining that will bleed during distention. Last but not least, studies have shown that up to almost 90% of patients who have been diagnosed with IC have pelvic floor dysfunction!  

Any guesses who are the experts at treating pelvic floor dysfunction?? That’s right, pelvic floor physical therapists! In fact, pelvic floor physical therapy is the only intervention that was given an evidence grade of “A”. In the AUA guidelines, pelvic floor physical therapy is in the second line treatment category. 

Lastly I want to highlight one area of research that is coming out around IC. A group of researchers in Japan found that there were fundamental differences between these two presentations and that they really should be separated into two different conditions with different treatment paradigms and protocols. The first group of people are those with Hunner lesions and histological and cellular level changes to the bladder lining. These patients should have a treatment protocol that includes therapies that directly address this cellular level dysfunction. The second group, those without lesions, are more likely to have their symptoms caused by pelvic floor dysfunction and less likely to have these cellular and pathological findings in the bladder lining. For this group, the treatment paradigm should be focused on therapies addressing pelvic floor dysfunction. 

Personally, I think that the term “interstitial cystitis” is overused and as much as there can be a personal and emotional relief to having a name for your symptoms, I don’t think that we are doing justice to people experiencing these symptoms to lump them all together and give it a medical sounding name. It would be like calling everything that causes all back pain a “herniated disc.” Sure disc herniation is a thing, (I had one, it was terrible!) but it by no means encompasses every injury and condition that can cause symptoms in the back and spine. So in conclusion, until we have, and consistently use, a better naming convention, if you have been diagnosed with interstitial cystitis or have symptoms that match those I listed above, you probably have a pelvic floor that could use some TLC, so take a deep breath and find yourself a good pelvic floor physical therapist or come see one of us at the Pelvic Health and Rehabilitation Center!

Additional Resources:

What People Don’t Know about Interstitial Cystitis

Pelvic Pain Explained: Interstitial Cystitis Resource List

References:

1. Gelman R. Interstitial Cystitis/Painful Bladder Syndrome(PBS): What’s in a Name? Educational Presentation Q1 2018.
2. Lukacz ES, Sampselle C, Gray M, et al. A healthy bladder: a consensus statement. Int J Clin Pract. 2011;65(10):1026-1036. doi:10.1111/j.1742-1241.2011.02763.x
3. https://www.hopkinsmedicine.org/health/conditions-and-diseases/interstitial-cystitis
4. Peters KM, Carrico DJ, Kalinowski SE, Ibrahim IA, Diokno AC. Prevalence of pelvic floor dysfunction in patients with interstitial cystitis. Urology. 2007;70(1):16-18. doi:10.1016/j.urology.2007.02.067
5. Correction to Lancet Infect Dis 2020; published online March 11, https://doi.org/10.1016/ S1473-3099(20)30144-4. Lancet Infect Dis. 2020;20(5):e79.
6. Han E, Nguyen L, Sirls L, Peters K. Current best practice management of interstitial cystitis/bladder pain syndrome. Ther Adv Urol. 2018;10(7):197-211. Published 2018 Mar 19. doi:10.1177/1756287218761574
7. Gupta P, Gaines N, Sirls LT, Peters KM. A multidisciplinary approach to the evaluation and management of interstitial cystitis/bladder pain syndrome: an ideal model of care. Transl Androl Urol. 2015;4(6):611-619. doi:10.3978/j.issn.2223-4683.2015.10.10
8. https://www.urologyhealth.org/urologic-conditions/cystoscopy
9. Meijlink, J.M. (2014), History of IC/painful bladder. Int J Urol, 21: 4-12. doi:10.1111/iju.12307
10. Maeda D, Akiyama Y, Morikawa T, et al. Hunner-Type (Classic) Interstitial Cystitis: A Distinct Inflammatory Disorder Characterized by Pancystitis, with Frequent Expansion of Clonal B-Cells and Epithelial Denudation. PLoS One. 2015;10(11):e0143316. Published 2015 Nov 20. doi:10.1371/journal.pone.0143316

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Are you unable to come see us in person? We offer virtual physical therapy appointments too!

Due to COVID-19, we understand people may prefer to utilize our services from their homes. We also understand that many people do not have access to pelvic floor physical therapy and we are here to help! The Pelvic Health and Rehabilitation Center is a multi-city company of highly trained and specialized pelvic floor physical therapists committed to helping people optimize their pelvic health and eliminate pelvic pain and dysfunction. We are here for you and ready to help, whether it is in-person or online. 

Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. The cost for this service is $85.00 per 30 minutes. For more information and to schedule, please visit our digital healthcare page.

In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page. 

PHRC is also offering individualized movement sessions, hosted by Karah Charette, DPT. Karah is a pelvic floor physical therapist at the Berkeley and San Francisco locations. She is certified in classical mat and reformer Pilates, as well as a registered 200 hour Ashtanga Vinyasa yoga teacher. There are 30 min and 60 min sessions options where you can: (1) Consult on what type of Pilates or yoga class would be appropriate to participate in (2) Review ways to modify poses to fit your individual needs and (3) Create a synthesis of your home exercise program into a movement flow. To schedule a 1-on-1 appointment call us at (510) 922-9836