As you might know from my previous post on the most effective natural therapies for interstitial cystitis, physical therapy is up there on the list of the top 3 most effective non-invasive and natural therapies.
As I know very little on the subject I thought it might be a good idea to get the view of an expert in the field. Therefore I got in touch with the wonderful Nicole Cozean, author of the book The Interstitial Cystitis Solution Physiotherapist over at Pelvic Sanity, who was so kind to share her knowledge and experience with us!
First of all, thank you Layla for all that you’re doing for the IC community and others with bladder health issues. Really glad that you invited to me to share with your readers.
My name is Nicole Cozean, and I’m a physical therapist who specializes in the treatment of pelvic pain. I have a particular passion for working with patients who have been diagnosed with interstitial cystitis – there is just so much misinformation out there about the condition, and so many of our patients have been to multiple doctors, other physical therapists, or specialists before finding relief with us.
I wrote The Interstitial Cystitis Solution, which came out in 2016, to provide a comprehensive, evidence-based, and practical guide to the condition for patients. I was the first physical therapist to serve on the Interstitial Cystitis Association Board of Directors and was named Physical Therapist of the Year by the IC Network. I also developed the first continuing education course on IC, so we can start giving more physical therapists the knowledge and tools they need to treat the condition.
We work with patients from across the United States and around the world at our Southern California clinic, PelvicSanity physical therapy, with both remote consultations and an out-of-town program.
Physical Therapy for Interstitial Cystitis
While the symptoms of interstitial cystitis may feel like they are related to the bladder, for many patients the bladder is actually an ‘innocent bystander’. Only about 10% of patients with the symptoms of IC have detectable damage to the bladder itself (known as Hunner’s lesions). Studies have shown that for 95% of patients with IC, pelvic floor dysfunction is causing or exacerbating their symptoms.
The pelvic floor is a shorthand term for the series of muscles that are slung underneath the pelvis. Among other important functions, they control urination – holding tight to keep us continent throughout the day, and consciously relaxing in order to allow us to go. (For more about the pelvic floor, check out our Pelvic Floor 101 guide).
When the muscles of the pelvic floor are tight, they irritate the nerves that run through the pelvic floor. This can cause pain anywhere that the nerve runs, and the brain can also interpret this as the urgent need to go to the bathroom. All of the symptoms of IC – urinary urgency/frequency, pelvic pain, urethral burning, suprapubic pain, low back pain, painful intercourse, and more – can all be caused or exacerbated by these muscles in the pelvic floor.
This is also why many of the symptoms of IC don’t relate at all to the bladder. So many people with IC have low back pain, hip or groin pain, painful intercourse, or difficulty starting a urine stream once they reach the bathroom. These are all signs of pelvic floor dysfunction, and aren’t related to the bladder at all. A lot of patients note that a hot bath helps to relieve their symptoms or that their symptoms flare after prolonged sitting. In these cases, the heat from the bath relaxes the pelvic floor muscles and prolonged sitting compresses the region.
We’ve actually created and published a Screening Questionnaire that you can take to determine whether or not pelvic floor dysfunction is likely in your case. It correctly identifies more than 90% of people with pelvic floor dysfunction, and you can get your results back instantly here: Cozean Pelvic Floor Dysfunction Screening Questionnaire
Evidence for Physical Therapy
The American Urological Association (AUA) considers physical therapy the most proven treatment for interstitial cystitis, and recommends that physical therapy be tried in the first line of medical treatment. Unfortunately, many patients – and their doctors! – don’t know this is a possible treatment option, and we often see patients who have been struggling with the condition for years or decades before finding relief with pelvic PT.
At our clinic in Southern California, PelvicSanity, we published results from our patients with IC. On average, patients saw more than a 60% improvement in pain, urinary symptoms, and how much their symptoms bothered them on a daily basis. About half of patients reported feeling relief after the first visit, while the remainder reported they experienced improvement in the first 3-5 visits.
Physical therapy isn’t the sole answer – a holistic approach is always best, and that can feature changes in diet, medication, bladder treatments, supplements, and other alternative approaches – but it’s a major component that is too-often overlooked.
Finding a Pelvic PT
Not all pelvic physical therapists have the experience or knowledge to treat interstitial cystitis patients well, so we always recommend doing your homework before choosing a pelvic PT and never being afraid to get a second (or third, or fourth) opinion. Almost 70% of the patients that we see have seen other PTs before they come to us. If you have tried pelvic PT and didn’t find relief, don’t necessarily think that pelvic PT doesn’t work for you – instead, it just may be that particular pelvic PT didn’t work for you.
This article we wrote on How to Find a Pelvic PT can be a good starting place. You want to find someone who specializes exclusively in the pelvic floor and has experience in dealing with the condition. The evidence for pelvic PT is for manual, hands-on physical therapy, not biofeedback or Kegels (which should never be done with interstitial cystitis). We also believe that you have to address both the internal and external issues at each visit, so many specialty clinics make sure to have an hour of time one-on-one with your physical therapist.
Physical Therapy for other Bladder Conditions
Interstitial cystitis isn’t the only bladder condition that can be improved with physical therapy. Overactive Bladder or urinary urgency and frequency symptoms are often caused by pelvic floor dysfunction, and manual pelvic PT has been shown to significantly improve 85% of patients diagnosed with Overactive Bladder. Recurring UTIs are also accompanied by pelvic floor dysfunction which can be both causing additional pain. They are often caused by tight pelvic floor muscles which make it more difficult to fully empty the bladder, leaving more residue in the bladder and causing additional UTIs. Urinary incontinence – whether caused by a stress like sneezing or laughing or by an overwhelming urge to go – is the result of a pelvic floor unable to fulfill its job of keeping us continent.
For more information, The Interstitial Cystitis Solution is a great overview of the condition and all the possible treatment options. We also have a lot of tools online, including a flare-busting plan, the AUA Guidelines for Treatment, and Symptom Log at PelvicSanity.com/interstitial-cystitis. We wrote an entire series of articles on the 8 Biggest Myths of IC.
Both the Interstitial Cystitis Association (ic-help.org) and the IC Network (ic-network.com) have some great resources and information online as well.
If you’re wondering if pelvic floor dysfunction may be underlying any of your bladder symptoms, we’ve created a simple, 10-question survey that identifies more than 90% of patients with pelvic floor dysfunction. You can find it at www.PelvicSanity.com/screening
I know this is a lot of information all at once, but underlying all of it is the message that there is certainly hope with IC (or any other bladder condition). Pelvic floor dysfunction is tricky, but it’s also something that we know how to treat. We start the IC Solution with “Thousands of people with interstitial cystitis live healthy, pain-free lives, and so can you.”
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy in Southern California, which includes both remote consultations and an out-of-town program for patients. Nicole was named the 2017 IC Physical Therapist of the Year, was the first PT to serve on the ICA Board of Directors, and is the author of the award-winning book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University.
Instagram: @PelvicSanity, @NicoleCozeanDPT
Now I’d like to hear from you: Have you tried physical therapy for IC? Would you like to try it? Let me know in the comments!
Laura Hubbard, RN, BSJanuary 22, 2019
1/22/19 As both a victim of End Stage, Systemic, Refractory, Grade IV IC since 1983, or so, & an RN, BS, I strongly disagree with your following statement: “… for many patients the bladder is actually an ‘innocent bystander’. Only about 10% of patients with the symptoms of IC have **detectable damage to the bladder itself** (known as Hunner’s lesions).” Have you forgotten our infamous “gloms, ” as we IC’ers call them? (Glomerulations) 90% of all IC victims HAVE THESE very visible, & often extremely numerous, hemorrhagic lesions. I do. They are the visible PROOF of the existence of this hideous disease itself & that a pt does indeed have IC. From what I’ve read & been told, the “gloms” themselves cause severe pain. Elmiron was specifically designed to heal the “gloms” – not Hunner’s Ulcers, which are usually only treatable by “laser blasting.”
You also make no mention of the drastic sclerosing (hardening, stiffening) of an IC ravaged bladder caused by the gloms & the subsequent shrinking/diminished capacity. From 1997 until 2002 I had to have a Cysto-Hydro done under GA every 30 days due to the sclerosing & severe shrinking. However, the awful Medicare HMO I had at that time would only “permit” me to have it done every 60 days. My bladder has actually shrunk to as little as 75 cc! (⅓ of a cup!) Thankfully, as of 2003, I now only have to have a Cysto-Hydro done 1 x yr – & I have regular Medicare with NO treatment limits.
It is this sclerosing & the bladder’s futile attempts to stretch to accommodate urine that cause the unbearable spasms & violent contractions that are just some of the many hallmark symptoms of IC.
I don’t understand why you have either ignored or simply overlooked glomerulations & sclerosing, diminished capacity – the visible, tangible signs of IC. I’m sure specific pelvic PT can help IC victims because I have a “saying” I developed in 1997: Where IC goes, Vd (& the former VVS), PFD & PN are sure to follow.” All the PT in the world can’t get rid of gloms, nor can it increase the capacity of a diseased-ravaged bladder lining. I am interested in reading your thoughts on these matters.
LaylaJanuary 22, 2019
Thanks for sharing your thoughts, Laura. I’ll pass this on to Nicole to see if she can elaborate more.
Kyle roseJanuary 22, 2019
I have IC and Fowler’s syndrome. I have been in pelvic floor PT and I get trigger point injections and bladder irrigations from my IC dr. I still have pain and flare ups. Unfortunately they can only manage ur symoro s it doesn’t get better. I also have MS and I have 2 bladder stimulators
Nicole Cozean, PT, DPT, WCS, CSCSJanuary 22, 2019
Thanks for writing, and so sorry to hear you’ve been dealing with interstitial cystitis for so long. While this article concentrated specifically on Physical Therapy and IC, there’s obviously much more to the condition (after all, we wrote an entire book on it!). We cover this information in much greater detail in the bladder treatments chapter The IC Solution, but you raise some great questions below that highlight a lot of how our understand has changed over the years.
CHRONIC BUT NOT DEGENERATIVE
Interstitial cystitis is considered a chronic condition, but it’s not degenerative – it doesn’t necessarily have to get worse, and the terms ‘end-stage’ or ‘Stage 4’ are reminiscent of oncology terms and are generally no longer used to describe the condition.
As the American Urological Association states in their IC Guidelines: “Some studies suggest that IC/BPS is a chronic condition with a waxing and waning course with, on average, little improvement over time while other studies suggest that most patients seem to improve over time.”
Studies have shown about 5% of patients experience the reduced bladder capacity and fibrotic bladder that you describe, for which hydrodistension (typically a 3rd-line medical treatment) can be an important component of treatment.
A great question about glomerulations, and it highlights an area where our understanding of the condition has changed significantly in the last few decades. It was once believed that glomerulations on a cystoscopy after a hydrodistension were an important hallmark of interstitial cystitis.
However, in 1998 important research was published from Texas A&M casting significant doubt on this hypothesis. In that study, researchers found that women with interstitial cystitis and completely asymptomatic women both saw glomerulations after hydrodistension in the ‘same degree and in the same proportion’. (Waxman et al, 1998).
In the American Urological Association IC Guidelines, they address the current state of the research around glomerulations. They occur in patients both with and without IC, including in patients with incontinence, endometriosis, or general pelvic pain.
As the Guidelines state: “Glomerulations may also be present in asymptomatic patients undergoing cystoscopy for other conditions” and “The finding of glomerulations of hydrodistension is variable and not consistent with clinical presentation.”
This research and the follow-up studies it led to have changed our understanding of IC. A hydrodistension is now no longer necessary to diagnosis IC, which can be diagnosed by clinical presentation alone. In another example, the Potassium Sensitivity Test is now no longer recommended for diagnosis, as it doesn’t find many patients with IC and misdiagnoses many others who don’t have the condition.
Recent research has also changed our understanding of the role of Elmiron – in the most recently clinical trials, Elmiron was actually shown to be no more effective for patients than a placebo (Nickel et al, 2015). In about half of studies overall it has shown no benefit; in other studies it has helped between 28-32% of patients.
Some other really great resources that go into more depth than we can in a comments section are:
The Broad Picture of IC by Dr. Kenneth Peters – https://www.mdedge.com/obgyn/article/136362/gynecology/broad-picture-interstitial-cystitis
American Urological Association IC Guidelines – https://www.auanet.org/guidelines/interstitial-cystitis/bladder-pain-syndrome-(2011-amended-2014)
Hope this helps, and best wishes for your health!
Nicole Cozean, PT, DPT, WCS, CSCS
Nicole Cozean, PT, DPT, WCS, CSCSJanuary 22, 2019
Thanks for writing, and sorry to hear you’re still dealing with IC flares. One of the resources on our webpage (www.pelvicsanity.com/the-ic-solution) is a Flare-Busting plan, which we often use with our patients. It helps put together a plan for understanding and dealing with flares when they occur. Hope it can help, and best wishes!
Debbie RomaineJune 12, 2019
I have had IC for about 10 years now. I live in the UK and pelvic PT has never been discussed by any doctors with me. Is this something offered as treatment in the UK or is it mainly in the USA only? I have scars on my bladder wall and as a result of this my bladder capacity has decreased significantly. I have a lot of frequency problems and wonder if pelvic PT would help with this.
LaylaJune 14, 2019
I’m not sure, sorry. I would ask your doctor. I could imagine it’s available privately if not on the NHS. But even in the US not that many therapists seem to be trained in IC specifically.