Interstitial Cystitis Overview

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.

Definition

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.

Symptoms

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.

Diagnosis

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.

Multi-Disciplinary Approach

Patients with interstitial cystitis or pelvic pain always benefit from a multidisciplinary approach to treatment.This can include:

• Stress relief to downregulate the nervous system can decrease symptoms and reduce flares. Gentle exercise, meditation, yoga, deep breathing, or working with a psychologist can all provide benefits for patients.
• Diet and nutrition are important when working with IC patients. There is no formal ‘IC Diet’, but most patients are sensitive to at least a few trigger foods. The gold standard of treatment is an elimination diet, where the common culprits are completely removed from the diet and then added back in one at a time. This identifies which foods are triggers for patients. With nutrition for IC, patients should avoid their personal trigger foods and eat healthy – it doesn’t have to be any more restrictive or complicated.
• Alternative treatments like acupuncture have been shown to reduce pelvic pain in patients, and several supplements have shown benefits in trials or anecdotally among patients.
• Bladder treatments include instillations and nerve stimulation. Some patients may benefit from bladder instillations, but many others find that the process of the instillation actually causes additional symptoms.  If instillations are beneficial, patients should be encouraged to address the underlying issues during the reprieve that instillations bring. Percutaneous tibial nerve stimulation or an implanted nerve stimulation device can both be possible treatment options.
• Oral medications can also reduce symptoms, but do not address the underlying cause of symptoms in patients. Medication that dampens the nervous system, often an anti-depressant or similar medication, can reduce pain and hypersensitivity. Anti-inflammatories may be beneficial in lowering inflammation and helping break the cycle of dysfunction-inflammation-pain. Most patients are started on Elmiron®, the only FDA-approved medication for IC; unfortunately, in the most recent clinical trial research Elmiron has been shown to be no more effective than a placebo. If it is effective, it only is beneficial for about one-third of patients, and many won’t be compliant with the drug due to cost and side effects.

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.

Additional Resources

• Interstitial Cystitis Overview (printable)
• The Interstitial Cystitis Solution
• Patient groups include the Interstitial Cystitis Association (ICA) (www.ic-help.org) and the IC Network (www.ic-network.com), which both have fantastic resources for patients.
• The AUA Guidelines for IC
• IC Flare-Busting Plan