Happy September! There are so many different awareness topics that are highlghted this month, including PCOS awareness, prostate cancer awareness, pain awareness, spinal cord injury awareness, just to name a few.

One that is close to my heart, both because I see people with this diagnosis and I personally have this diagnosis, is interstitial cystitis (IC) also known as bladder pain syndrome (BPS).

What is it?

Typical patients present with pain above the pubic bone (can be sharp pain, discomfort, or just pressure.). Sometimes this pain extends to the rest of the pelvis, including the urethra, vulva, vagina, and rectum. The pain can be worsened by specific foods or drinks, worsened with bladder filling, and may improve with bladder emptying. They also experience urinary urgency (the sense of dear god get me to the bathroom) and frequency (going more often than every 2 hrs). Female patients often present with painful penetration as well.

Male IC/PBS patients are rare. The AUA notes the ratio of female to male is 10:1. They typically present with more pain above the pubic bone than pain at the perineum (aka the pelvic floor).

What does all this jargon mean? Basically, IC/BPS presents like a UTI, but your tests are negative. Some people experience a burning/pressure/pain sensation along the pubic bone, which can include the urethra and the external genetalia.

In 2022 the American Urology Association changed their recommendation from doing a cystoscopy (taking a camera, running it up through the urethra to look at the bladder) with most patients, to only requiring this when the diagnosis is in question.

There are a few different subgroups/phenotypes (phenotype – different observable characteristics of a disease) to this diagnosis:

Bladder centric – small capacity, Huner lesions (a type of lesion found inside the bladder), pain that improves with bladder instillations (see below)

Pelvic floor – tenderness on exam (women with this respond better to pelvic floor PT, unsure about the men, it appears there’s minimal research)

The following three fit under the umbrella of widespread, systemic pain:

COPC (chronic overlapping pain conditions) – fibromyalgia, IBS, etc

Widespread psychosocial difficulties – anxiety, depression, high levels of life stress, traumatic events, etc

Poly-symptomatic poly-syndromic – symptoms that are spread across multiple organ systems

How do they treat it?

Medical management typically involves some kind of prescription of pain medication. If symptoms don’t change, they may recommend a bladder instillation and hydrodistension of the bladder. Basically, fill the bladder up with water to help stretch the musculature and/or then place medications directly into the bladder.

The main recommendation (with the highest form of evidence) is pelvic floor PT. Why? Often times the pelvic floor is sitting in a contracted state (read tight). Helping a patient learn how to relax their pelvic floor, and in my professional (and personal) experience, specifically the front of the pelvic floor, makes a significant different. When in a flare, doing soft tissue mobilization internally and externally can really be helpful to reduce symptoms. Part of my job is to teach someone how they can do this themselves, with the help of a pelvic wand.

The AUA also recommends working on the muscles around the pelvis to help with symptoms. This is a classic issue we see in pelvic floor therapy. Sometimes the pelvic floor is tightening as a response to the inner thighs, glutes, or abs being too tight.

The other big piece they mention is management of stress and incorporating self care. This is part of why I am so focused on whole person care. In my personal experience (and it’s often the same for my patients), flares happen either during or right after periods of major stress. We can address the musculature all we want, BUT the nervous system is what controls underlying tension. If you’re not sleeping well, hydrating, and eating regularly, it’s going to make recovering from a flare or preventing one in the first place even more difficult. The goal is to get you out of the flare and back to as close to “normal” bladder function as we can.

If you want to get deep into the nitty gritty on this subject, check out the guideline statement from the AUA here.

Sound like you? Pelvic floor PT may significantly help your symptoms. Email me to set up a free discovery call to see if PT is right for you.

-Naomi