In this post, we want to give a high-level overview of interstitial cystitis and an introduction to other resources if you’d like to dive deeper into treatment the condition. There’s a printable, patient-friendly version of this overview if you’d like to use it in describing the condition with patients. In addition, you may want to review the 8 Myths of Interstitial Cystitis series and the AUA Guidelines for Interstitial Cystitis.
Interstitial cystitis is defined as 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.
Unfortunately, for physicians, pelvic floor dysfunction falls under category of ‘unidentifiable cause.’ Interstitial cystitis is really more of a description of symptoms, rather than a discrete diagnosis, and the condition presents in many different ways.
The hallmarks of interstitial cystitis are pelvic pain, often in the suprapubic area or inner thighs, and urinary urgency and frequency. Other common symptoms include pain with intercourse, nocturia, low back pain, constipation, and urinary retention.
Many patients are surprised to realize that symptoms like painful intercourse, low back pain, and constipation are related to their IC diagnosis. This challenges the misconception that issues are arising solely from the bladder, and is a good way to help patients (and their physicians) understand that IC is about more than just the bladder.
Interstitial cystitis is fundamentally a diagnosis of exclusion. Most patients suspect a urinary tract infection (UTI) when their symptoms first present. It’s actually common for symptoms to start as the result of a UTI, and simply not resolve once the infection has cleared. Patients are often treated with multiple rounds of antibiotics for these ‘phantom’ UTIs, where cultures have come back negative, before an IC diagnosis is considered.
It’s important for us as physical therapists to be able to share with patients that no testing is required to confirm an IC diagnosis, it can be diagnosed clinically. In practice, a urologist will likely want to conduct a cystoscopy, which can rule out more serious issues like bladder cancer as well as check for Hunner’s lesions (wounds in the bladder that are present in about 10% of IC patients). However, after that, no additional testing is needed. The potassium sensitivity test (PST) was formerly used by some urologists, but it has been shown to be useless diagnostically and extremely painful for patients and is not recommended by the American Urological Association. Urodynamic testing is also often conducted, but again is not necessary to establish an IC diagnosis.
Physical Therapy for IC
According to the American Urological Association, physical therapy is the most proven treatment for interstitial cystitis. It’s given an evidence grade of ‘A’ (the only treatment with that grade) and recommended in the first line of medical treatment.
In controlled clinical trials, manual physical therapy has been shown to benefit up to 85% of both men and women. These trials reported benefits after ten visits of one-hour treatment sessions.
In a study conducted at our clinic , PelvicSanity, we found that physical therapy was able to reduce pain for IC patients from an average of 7.6 (out of 10) before treatment to 2.6 following physical therapy. Similarly, how much their symptoms bothered patients fell from 8.3 to 2.8. More than half of patients reported improvements within the first three visits.
Unfortunately, many patients still aren’t referred to pelvic physical therapy by their physician. More than half of the patients in the study had seen more than 5 physicians before finding pelvic PT, and only 7% of patients felt they had been referred to physical therapy at the appropriate time by their doctor.
Patients with interstitial cystitis or pelvic pain always benefit from a multidisciplinary approach to treatment.This can include:
Nicole Cozean, PT, DPT, WCS (www.pelvicsanity.com/about-nicole) is the founder of PelvicSanity physical therapy in Southern California. Name the 2017 PT of the Year by the ICN, she’s the first physical therapist to serve on the Interstitial Cystitis Association’s Board of Directors and the author of the award-winning book The IC Solution (www.pelvicsanity.com/the-ic-solution). She teaches at her alma mater, Chapman University, as well as continuing education through Herman & Wallace. Nicole also founded the Pelvic PT Huddle (www.facebook.com/groups/pelvicpthuddle), an online Facebook group for pelvic PTs to collaborate.
Interstitial Cystitis Course
In our upcoming course for physical therapists in treating interstitial cystitis (April 6-7, 2019 in Princeton, New Jersey), we’ll focus on the most important physical therapy techniques for IC, home stretching and self-care programs, and information to guide patients in creating a holistic treatment plan. The course will delve into how to handle complex IC presentations. It’s a deep dive into the condition, focusing not just on manual treatment techniques but also how to successfully manage an IC patient from beginning to resolution of symptoms.
Earlier diagnosis is clearly a huge need for patients with pelvic floor dysfunction. Many patients suffer with their symptoms for years before even hearing the words “pelvic floor,” or realizing that a pelvic floor physical therapist may be able to help. For interstitial cystitis, one large survey article found fewer than 10% of patients with the condition had been correctly diagnosed with IC, even after years of symptoms and visits with multiple doctors.
Even after being diagnosed, patients still don’t learn about how the pelvic floor can be causing or exacerbating their symptoms. In one study of our interstitial cystitis patients, 46% learned about the importance of the pelvic floor on their own and sought out treatment independently, while nearly half felt they were referred by their physician to physical therapy far too late, as a ‘last resort.’ This is despite the fact that many of these patients had seen five or more physicians and physical therapy is considered the most proven treatment for IC by the American Urological Association.
Physicians, orthopedic physical therapists, other practitioners, and patients themselves need a simple, proven way to identify pelvic floor dysfunction to help patients find pelvic floor physical therapy earlier in their medical journey.
In a large survey of our patients with confirmed pelvic floor dysfunction, we examined what symptoms and medical history was most closely correlated with pelvic floor dysfunction. Any screening questionnaire would ideally be able to identify a wide variety of pelvic floor dysfunction, including patients with chronic pelvic pain, pelvic organ prolapse, orthopedic pain with a pelvic floor component (low back, hip, groin), urinary urgency/frequency, and/or bowel dysfunction.
While these patients all had different medical diagnoses, many symptoms were common across the patient population. The most common were pelvic pain (84%), urinary urgency, frequency, or incontinence (81%), orthopedic pelvic pain (71%) and symptoms that worsen with prolonged sitting (68%).
Based on the survey results, we created the Cozean Pelvic Dysfunction Screening Protocol to screen for pelvic floor dysfunction and published the results in the International Pelvic Pain Society (2017). The goal was to correctly identify more than 80% of the patients with pelvic floor dysfunction (sensitivity). For ease of use by both practitioners and patients, the questions were phrased so they could be answered with a simple ‘yes/no’ (as a check box). If patients answers ‘yes’ to 3 or more of the questions, pelvic floor dysfunction is highly likely.
In a model like this, we would expect a normal (bell-shaped) distribution curve of answers from patients with pelvic floor dysfunction. Some patients will score on the high end, others on the low, and the majority would be clustered in the middle. This is what we observe with use of the questionnaire, as seen by the trendline in the blow graph. Most patients with confirmed pelvic floor dysfunction cluster in scores between 3 and 7, with a few scoring at 8 or higher. Less than one out of ten patients with pelvic floor dysfunction score below a 2 on the questionnaire and would not be captured by this measure.
Specificity: 91%. More than 90% of patients with confirmed pelvic floor dysfunction were correctly identified by this screening protocol. Additional testing is required on a general population without PFD to determine the specificity of the questionnaire.
Average: 5.2. Of patients with confirmed PFD, the average score according to this screening protocol was 5.2 with a median score of 5 and a mode of 6. This is in line with what would be expected with a normal distribution curve.
We hope this 10-question survey is able to help patients with pelvic floor dysfunction be diagnosed earlier - whether by their physician, other physical therapists, or themselves – and seek pelvic floor physical therapy earlier in their medical journey. Please feel free to use the printable version of this protocol with your patients or in working with local practitioners.
Nicole Cozean will be teaching the course Interstitial Cystitis: Holistic Evaluation and Treatment in Princeton, NJ from April 6-7, 2019.
Nicole Cozean is the founder of PelvicSanity physical therapy, in Orange County, California. Nicole was named the 2017 PT of the Year, is the first physical therapist to serve on the ICA Board of Directors, and is the award-winning and best-selling book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University and teaches continuing education courses through the prestigious Herman & Wallace Institute.
Dr. Nicole Cozean was just awarded the IC/BPS Physical Therapist of the Year by the IC Network, one of the largest patient advocacy groups for interstitial cystitis! Today she shares her treatment approach for this complex dysfunction. Join Dr. Cozean in San Diego on April 28-29, 2018 to learn everything there is to know about interstitial cystitis.
Interstitial cystitis (IC) is a chronic pelvic pain condition characterized by pelvic pain and urinary urgency/frequency. IC is frequently accompanied by other symptoms1, including painful intercourse, low back or hip pain, nocturia, and suprapubic tenderness.
While pelvic floor physical therapy is the most proven treatment for interstitial cystitis, most patients require a multi-disciplinary approach for optimal results. The majority are forced to develop this holistic approach on their own, but one of the most valuable things a physical therapist can provide is assistance in creating their own unique treatment plan. The American Urological Association has released treatment guidelines for interstitial cystitis, and potential treatments fall into several different categories. It is important to note that most treatments aren’t effective for the majority of patients, so a trial-and-error approach is needed to find the right balance for each patient. Tracking symptoms with a weekly symptom log can be a powerful tool to optimize the individual treatment plan.
Oral medications are primarily used to reduce pain.Anti-depressants can dampen the nervous system, decreasing the severity of pain reported. Anti-histamines have also been shown to be effective in reducing the pain and symptoms of interstitial cystitis, perhaps because of their ability to reduce inflammation and break the cycle of dysfunction-inflammation-pain (the DIP cycle). Some patients require opioid painkillers for adequate pain control.
Urinary tract analgesics can provide temporary pain relief for some patients, but cannot be taken consistently because they thicken the urine and strain the kidneys. Some patients find success using these medications (Azo, Pyridium, Uribel) during severe pain flares.
The only FDA-approved oral treatment for interstitial cystitis is Pentosan Polysulfate (PPS, Elmiron®). This is commonly prescribed to patients after an IC diagnosis, but has been shown to be effective in only 28-32% of patients. It also requires a long time (often 6-9 months) to build up in the system and take effect, and many patients stop taking the drug before they could see effect because of side effects (including hair loss) or cost. Unfortunately, many patients lose more than a year after their initial diagnosis waiting to see if Elmiron will work for them, when it is unlikely to provide complete relief.
Antibiotics should never be prescribed for IC in the absence of a confirmed infection.
Bladder instillations deliver numbing medication directly to the bladder through a catheter and can provide temporary pain relief for some patients. If these are effective, they typically are repeated at least weekly as symptoms return. Some patients don’t tolerate the catheterization well, finding the procedure causes more pain than it prevents. Typical bladder instillations consist of Lidocaine, Heparin, or a combination of the two.
Another route of treatment works by artificially stimulating the nerves the innervate the bladder and pelvic floor.Percutaneous tibial nerve stimulation (PTNS) directs electrical impulses from the ankle up through the pelvic floor. This is an outpatient procedure typically performed weekly for a course of 12 weeks. A more permanent option is implanting a device under the skin of the buttock to target the sacral or pudendal nerve root directly.With this procedure, the patient is given a ‘trial run’ with an external device to see how it performs. If significant improvements are noted, the device can be permanently implanted.
Many patients see marked improvement in their symptoms with a home care program. Deep breathing or meditation can calm the nervous system and reduce the amplifying effect of an upregulated nervous system. A stretching regimen targeting the inner thighs, glutes, abdomen, and pelvic floor can relax muscles and reduce nerve irritation in the region. Self-massage can find and eliminate the trigger points that are causing symptoms. Home tools like a foam roller can address external trigger points, while patients can be taught internal self-release with the help of a tool like the PelviWand or another tool.
One of the most common misunderstandings about IC centers on the ‘IC Diet.’ In fact, there’s no such thing. While nearly 90% of IC patients report that diet influences their symptoms in some way, the scope and severity of dietary triggers varies greatly between patients. There are a few common culprits - coffee, tea, citrus fruits, artificial sweeteners, tomatoes, cranberry juice - but no guarantee that a patient will be sensitive to all (or any) of these. Many patients read about an ‘IC Diet’ online after receiving their diagnosis, and are convinced that they need to cut out a huge portion of their diet.
Instead, they should be doing an elimination diet focused on identifying their trigger foods.With this approach, they eliminate most of those common culprits and see how it affects their symptoms.If they notice an improvement, they can gradually add foods back into their diet, one at a time, until they see symptoms increase again. This allows patients to identify their specific trigger foods.
Our advice for IC patients is simple - avoid your trigger foods and eat healthy. It doesn’t have to be any more restrictive than that.
There are also several supplements that have shown benefit for patients, either in clinical trials or anecdotally. Prelief (calcium glycerophospate) is an antacid that may reduce the consequences of eating a trigger food. L-Arginine is a semi-essential amino acid that facilitates blood flow and vasodilation; in clinical trials it was shown to be effective for nearly 50% of patients in reducing pain and urinary symptoms. Aloe Vera pills are used by many patients, and thought to help replenish the bladder’s protective layer. Finally, a combination of supplements known as Cystoprotek is also a common supplement taken by IC patients, combining anti-inflammatory flavonoids with molecules that may reinforce the bladder lining.
Acupuncture has been shown to provide relief for pelvic pain patients2, with 73% of men with chronic prostatitis (either identical or closely related to IC) reporting improvement. These men received two treatments weekly for six weeks, focusing around the sacral nerve. Women with pelvic pain and painful intercourse have also reported improvements in pain with 10 sessions of acupuncture3.
Cognitive-Behavioral Therapy (CBT) has been shown to help reduce pain in conditions as diverse as cancer, low back pain, and pelvic pain. In pelvic pain, ten one-hour sessions of CBT was shown to provide significant benefit for nearly half of patients4. Supportive psychotherapy was also shown to have benefits for pelvic pain patients.
A multi-disciplinary approach provides the best results for patients. Physical therapists, who see our patients regularly, can be a great resource in suggesting additional treatment options. The American Urological Association IC Guidelines can be an important resource in guiding patients to other options and developing their unique treatment plan.
For additional patient resources available for download, feel free to visit The IC Solution page.. In our upcoming course for clinicians treating interstitial cystitis (April 28-29, 2018 in San Diego), we’ll focus on the most important physical therapy techniques for IC, home stretching and self-care programs, and information to guide patients in creating a holistic treatment plan.
1. Cozean, N. "Pelvic Floor Physical Therapy in the Treatment of a Patient with Interstitial Cystitis, Dyspareunia, and Low Back Pain: A Case Report". Journal of Women's Health Physical Therapy. 2017
2. Chen R, Nickel JC. "Acupuncture ameliorates symptoms in men with chronic prostatitis/chronic pelvic pain syndrome"Urology. 2003 Jun;61(6):1156-9; discussion 1159.
3. Schlaeger, J, et al. "Acupuncture for the Treatment of Vulvodynia: A Randomized Wait‐List Controlled Pilot Study". Journal of Sexual Medicine. 30 January 2015. https://doi.org/10.1111/jsm.12830
4. Masheb, et al. "A randomized clinical trial for women with vulvodynia: Cognitive-behavioral therapy vs. supportive psychotherapy". PAIN® Volume 141, Issues 1–2, January 2009, Pages 31-40
Interstitial cystitis is a chronic pain condition characterized by both pelvic pain and urinary symptoms. It’s diagnosed by unexplained pain or pressure that is perceived to be related to the bladder, and affects more than 12 million Americans. It’s often described as the sensation of a urinary tract infection, but without any bacterial infection. Many patients report severe pain, often more intense than that associated with bladder cancer, and up to 85% of patients have accompanying pelvic floor dysfunction.
Pelvic floor physical therapy is the most proven treatment for interstitial cystitis. It’s recommended by the American Urological Association (AUA) as a first-line medical treatment in their IC Guidelines, and is the only treatment given an evidence grade of ‘A’. Furthermore, it’s the sole intervention that provides sustained relief; bladder treatments and oral medications must be continued indefinitely to provide benefit, if they work at all.
Research has demonstrated that at least 85% of patients with interstitial cystitis also have pelvic floor dysfunction. In fact, many of the symptoms of IC can only be explained by the pelvic floor. The majority of patients report painful intercourse, low back pain, hip pain, or constipation accompanying the condition; symptoms that have nothing to do with the bladder.
Despite this, many patients don’t learn about pelvic floor physical therapy for years after their diagnosis. Many have to discover pelvic PT for themselves, or their doctor only mentions physical therapy as a last resort. At PelvicSanity, we just published a study of our interstitial cystitis patients in the International Pelvic Pain Society (IPPS) meeting, reporting on both patient outcomes and their experience with the medical system following their IC diagnosis.
In following the results for thirteen consecutive patients with an interstitial cystitis diagnosis, patients reported more than a 60% improvement in pain, symptom bother, and how much symptoms limited their daily activities. On average, their pain level was at a 7.6 out of 10 upon initial evaluation, which fell to 2.6 after treatment.
Patients saw a relatively rapid improvement in their symptoms with treatment. Over half (54%) reported an improvement in symptoms within their first three visits; 31% saw their first improvement in visits 4-6 and 15% required ten or more visits for subjective improvement. Importantly, all patients in the study reported a better understanding of their condition and feeling more hopeful for recovery after their initial evaluation.
More than half of these patients reported seeing five or more medical doctors for their condition prior to beginning pelvic floor physical therapy, and had been prescribed multiple medications and undergone bladder treatments without success. However, only a single respondent (7.7%) believed they had been referred to pelvic PT by their doctor at the appropriate time. Nearly half (46%) had to find out about pelvic floor physical therapy for interstitial cystitis themselves, while the remainder felt they had been referred by their doctor far too late, as a last resort.
With more than 12 million women and men suffering with this condition in the United States alone, increasing education – for both doctors and patients – is vital. In our upcoming course for physical therapists in treating interstitial cystitis (April 28-29, 2018 in San Diego), we’ll focus on the most important physical therapy techniques for IC, home stretching and self-care programs, and information to guide patients in creating a holistic treatment plan