Understanding Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS)

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A frustrating and often misunderstood diagnosis is Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS). It’s marked by frequent urination, sudden urgency, pelvic pressure, and pain that tends to ease after urination. Because these symptoms closely resemble a urinary tract infection, many people initially assume that's what’s going on. However, tests usually show no infection, and the bladder appears normal. Current guidelines no longer point to visible damage in the bladder wall. Instead, IC/PBS is now recognized as a neuromuscular disorder—one that affects how the nerves and muscles around the bladder behave, resulting in discomfort even when there's no physical abnormality. 

Different phenotypes have been recognized and can assist in treatment. The onset of symptoms can help guide classification to a phenotype as well. Did it begin in childhood, after chemotherapy, menopause, or the result of infection?

1. Hunner’s lesions/Inflammatory - wounds on bladder, severe pain. May be the result of a viral infection or neuroinflammation - a systemic inflammatory response from the central nervous system.

2. Infection mediated - with a history of frequent urinary tract infections (UTI)

3. Neurogenic/hypersensitivity/central sensitization - may also have other overlapping pain conditions like IBS, Fibromyalgia.

4. Multiple allergies - you may also have a variety of allergic reactions to other environmental factors

5. Pelvic floor driven - possibly began after muscle trauma causing muscle tension (birth, athletes, injury)

6. Primary storage symptom syndrome - you avoid pain by urinating frequently

7. Urethral pain syndrome - pain only in the urethra

8. Associated sexual pain

9. Flares - Is it triggered by diet, menstruation, stress, other infections, inflammatory or painful conditions or intimacy?

General symptoms can include: 

• Pelvic pain - this can include the urethra, vulva/vagina, penis, testicles, bladder, rectum and even refer to the back and hips

• Urinary frequency/urgency - One should be able to hold their bladder for 2-5 hours. Urinating more than 8x/day is excessive. 

• Nocturia which means urination at night. We might normally urinate 0-1x/night and we should easily fall back asleep once returning to bed. More than 0-1x/night is disruptive. 

• Pain with intimacy - this might be with penetration but can also be painful externally. Pain may occur during intercourse or up to 48 hours afterwards. Pain may occur with orgasm or you may have symptoms of Persistent Genital Arousal Disorder (PGAD)

• Prostatitis like symptoms - like pain, incomplete emptying along with urinary frequency/urgency. 

Even if you fall into a category that isn’t “pelvic floor muscle driven,” physical therapy can still be an important part of your recovery. To understand how physical therapy can help we need to discuss a few correlations. 

We’ve mentioned that the guidelines state IC/PBS is a neuromuscular disorder - this means it stems from the nerves/nervous system and muscles. Specifically of the pelvis and pelvic floor. One feedback loop that exists is: 

Pain ↔ tight muscles ↔ urinary symptoms ↔ tight muscles ↔ pain

We reflexively tighten muscles in response to pain, however muscles that are constantly tight and protecting from pain soon become a source of pain as well. 

Symptoms of urinary frequency/urgency can create tight muscles because we’re trying to hold our bladder, but tight pelvic floor muscles don’t allow us to properly void our bladder.  Tight pelvic floor muscles also become the source for referred bladder pain.

Now add the emotional turmoil these symptoms create, you’ve added the central nervous system component - the Sympathetic Nervous System (SNS) - your “Fight or Flight” system. When the SNS is constantly activated, it creates dysfunction in our hormonal and immune systems which just adds to the mix of symptoms and reinforces the feedback loop - negatively. 

How are you supposed to get anything done if pain, urinary symptoms and anxiety are always in the way?

We work with you to address all these contributing factors in a systematic, deliberate and manageable way.  We may use: 

💜Various hands on techniques to decrease muscle tension which helps with pain and urinary symptoms. 

💜Fascial work - which helps improve function in the surrounding organs, muscles, nerves and around the urethra.

💜Bladder training

💜Techniques to manage your Parasympathetic Nervous System (PNS) -the “rest and digest” system by:

• Improving sleep

• Managing an appropriate level of exercise

• Finding relaxation strategies like diaphragmatic breathing and Vagus nerve stimulation  

If you’ve been diagnosed with IC/PBS or think you may have it, make an appointment to get started on your recovery journey today. 

Reference: https://www.icnetwork.org/