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.
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Symptoms of Interstitial Cystitis Bladder pain Urinary Urgency Urinary Frequency Pain worsened with bladder filling Nocturia Dysuria |
Tests to rule out other possible causes
Blood test Urinalysis Prostate excretions Cystoscopy Bladder wall biopsy |
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:
- Gelman R. Interstitial Cystitis/Painful Bladder Syndrome(PBS): What’s in a Name? Educational Presentation Q1 2018.
- 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
- https://www.hopkinsmedicine.org/health/conditions-and-diseases/interstitial-cystitis
- 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
- 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.
- 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
- 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
- https://www.urologyhealth.org/urologic-conditions/cystoscopy
- Meijlink, J.M. (2014), History of IC/painful bladder. Int J Urol, 21: 4-12. doi:10.1111/iju.12307
- 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
FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.