We're going to completely change the way you think of interstitial cystitis. IC is a pelvic pain condition with bladder symptoms, NOT a bladder condition. This mindset shift completely changes how we approach our patients.
How do we know IC is not a bladder condition?
The definition of IC is pain or pressure perceived to be related to the bladder, along with urinary urgency/frequency, in the absence of any other explanation. It's a diagnosis of exclusion.
More than 90% of people diagnosed with IC have no discernable issues with their bladder lining.
Many of the common symptoms of IC - low back pain, painful intercourse, hip pain, suprapubic pain, etc. - have nothing to do with the bladder.
Pelvic floor physical therapy is the most proven treatment for IC (given an evidence grade of 'A'), while most bladder-focused treatments are relatively ineffective.
In this 'sode we go through the evidence and get practical with how you can talk about this with your patients. We can't continue to perpetuate the myth IC is a bladder condition. It leads to invasive procedures, ineffective bladder-focused treatments and years of unnecessary suffering for our patients.
We hope this makes you more confident with these complex patients in both treating their pelvic floor issues but also managing their case so they can get help!
IC Course - Cohort #2
If you're looking to provide better, more comprehensive care for your patients with IC - the IC: Holistic Evaluation & Treatment course is opening in just a few weeks! This second cohort will get you access to all of the information, technique demonstrations (on both a model and real patient) and more. You'll also get $50 off and access to a LIVE Q&A to answer any questions and implement!
About Us
Nicole and Jesse Cozean founded Pelvic PT Rising to provide clinical and business resources to physical therapists to change the way we treat pelvic health. PelvicSanity Physical Therapy (www.pelvicsanity.com) together in 2016. It grew quickly into one of the largest cash-based physical therapy practices in the country.
Learn more at www.pelvicptrising.com, follow Nicole @nicolecozeandpt (www.instagram.com/nicolecozeandpt) or reach out via email (nicole@pelvicsanity.com).
We're going to completely change the way you think of interstitial cystitis. IC is a pelvic pain condition with bladder symptoms, NOT a bladder condition. This mindset shift completely changes how we approach our patients.
How do we know IC is not a bladder condition?
The definition of IC is pain or pressure perceived to be related to the bladder, along with urinary urgency/frequency, in the absence of any other explanation. It's a diagnosis of exclusion.
More than 90% of people diagnosed with IC have no discernable issues with their bladder lining.
Many of the common symptoms of IC - low back pain, painful intercourse, hip pain, suprapubic pain, etc. - have nothing to do with the bladder.
Pelvic floor physical therapy is the most proven treatment for IC (given an evidence grade of 'A'), while most bladder-focused treatments are relatively ineffective.
In this 'sode we go through the evidence and get practical with how you can talk about this with your patients. We can't continue to perpetuate the myth IC is a bladder condition. It leads to invasive procedures, ineffective bladder-focused treatments and years of unnecessary suffering for our patients.
We hope this makes you more confident with these complex patients in both treating their pelvic floor issues but also managing their case so they can get help!
IC Course - Cohort #2
If you're looking to provide better, more comprehensive care for your patients with IC - the IC: Holistic Evaluation & Treatment course is opening in just a few weeks! This second cohort will get you access to all of the information, technique demonstrations (on both a model and real patient) and more. You'll also get $50 off and access to a LIVE Q&A to answer any questions and implement!
About Us
Nicole and Jesse Cozean founded Pelvic PT Rising to provide clinical and business resources to physical therapists to change the way we treat pelvic health. PelvicSanity Physical Therapy (www.pelvicsanity.com) together in 2016. It grew quickly into one of the largest cash-based physical therapy practices in the country.
Learn more at www.pelvicptrising.com, follow Nicole @nicolecozeandpt (www.instagram.com/nicolecozeandpt) or reach out via email (nicole@pelvicsanity.com).
In the last 10 years, our field has gone from an unknown specialty to a household name. This brings unprecedented opportunities, but we need to rise up to meet them and give our patients the care that they deserve. In order to help others get better, we need to be better. This podcast will help you to become more confident with your patients, more successful in your practice or business and a leader in pelvic health, and we're going to have some fun along the way. Join us as we rise together. We're Jesse and Nicole Cozine, founders of Pelvic Sanity Physical Therapy and the creators of the Pelvic PT Huddle, and this is Pelvic PT Rising.
Speaker 2:
Hey guys, welcome back to another episode of the Pelvic PT Rising podcast with Jesse and Nicole Cozine. Hello, dude, we're going to be talking a lot about IC this month. You're doing a talk on IC at CSM it's on your mind. We're also are going to be doing a launch of the second cohort of the IC course for practitioners that you have, so this is going to be an IC centric time. What it's not going to be is talking a whole lot about the bladder, because what we're talking about today is that IC is not a bladder condition.
Speaker 1:
Oh yes, this is one of my huge passions treating patients with interstitial cystitis. I started my career at a hospital-based program in which I was given the tall task of starting a huge program that ended up being one of the biggest ones in Orange County. But ultimately, though, I got paired with a urogynecologist at the time that was really one of the only people around the whole region that was treating folks with interstitial cystitis, and he was primarily referring his patients to me, and so I got to spend a lot of time with him and the way that he was medically managing these patients and I was seeing. That started my interest in busting a lot of myths about this condition, and so we have a whole IC myth series. We go over that extensively in the course, but today we're going to talk about interstitial cystitis is not a bladder condition.
Speaker 2:
Cool. Let me give you guys just a little bit of details If you want to learn all of the details about treating IC evaluation, progressing through treatment. It was so funny, nicole. You were looking back through your IC course in front of CSM and kind of pairing that down from 12 or 13 hours worth of content to inspiration for whatever it is an hour and 45 minute course at CSM. You always come back with those and you're like dude, this course is like fucking good yeah.
Speaker 1:
I seriously said that, and you know I'm doing the CSM presentation talk with my good friend, jessica Rial of Southern Pelvic Health, who I also do Pelvicon with, and so I was just looking through it and we were pulling, you know, some topics from it as well as creating some other new ones and stuff. And yeah, I was like, damn, this course is freaking bomb and I just really am passionate about sharing it with everybody. So I hope that you will also think it's bomb when you take it. It is literally the most comprehensive course out there to train you how to treat people with interstitial cystitis. It is like, from start to finish you understand everything about the condition, the history of it, where it's been and then also how to effectively treat it with your patients. And so, yeah, if you're going to get freaking amazing results, you're going to help people live happy, healthy, pain-free lives, even despite having the diagnosis of quote interstitial cystitis. I'm really excited for you to go on that treatment journey with me.
Speaker 2:
Yeah, so if you're interested in doing that, that is going to open up on the 19th of this month, so you've got about a week and a half. There is a wait list to make sure that you're on there. You'll get more details when you sign up there, but it'll be $50 off the course. It'll be a live Q&A with Nicole. Now if you're one of the 300 plus folks who have already taken this, you will also get access to that live Q&A. But we will try to prioritize the questions from those of you guys who are newbies going through this in this second cohort. So that's that. You can find it at publicptrisingcom. Get on the wait list if you're interested. Okay, let's do this. Explain this to me, because this seems counterintuitive and clearly it has baffled urologists now for more than a century. I see has symptoms that seem to be related to the bladder, and yet it's not a bladder condition.
Speaker 1:
Yes.
Speaker 2:
That seems hard.
Speaker 1:
True For some people to get Podcast over. I mean, here's the deal. I think that there's a lot of confusing things about how interstitial cystitis was originally thought of, and there was a big difference in time between, hey, we actually are identifying these group of people that have these really bad bladder symptoms and we also found that, oh my gosh, they have these lesions. And there was a huge ass time period that went by when medical community patients thought that it was just bladder and until researchers at Stanford University found that, like, uh-oh, the majority of people actually don't have bladder lesions with these same symptoms. What the heck is going on here?
Speaker 1:
So that was from 1914, when the lesions were first discovered by Dr Hunter which is why they're called Hunter's lesions and it was all the way until 1978, where those Stanford researchers were like, let's take a second look at this, because as we're looking at the bladder there's, we're actually finding a subset of these patients, a huge subset, the majority over 90% of them that don't have any bladder lining pathology.
Speaker 1:
The problem is that that has informed that sort of lag in understanding the condition and then it continued on from 1978 until, quite frankly, literally like 2011, 2014, where we're really focused on bladder pathology and looking for it because it must be there, because these patients are complaining of only bladder symptoms. So even the pain related to IC is usually related to some sort of bladder filling, urethral pain, urethral burning, something like that. And so I feel like one of the biggest things from the trickle down effect that that had for us is that we and it's in the name interstitial right, it was relating to the interstitium of the lining of the bladder, cestitis, which is literally bladder inflammation, so inflammation of the lining of the bladder. It's like a misnomer that we now know is a misnomer, but we didn't think it was for a really long time.
Speaker 2:
Right. It's like if we called heart attacks, shoulder pains, it's like it kind of messes with the whole, like treating of the thing right it's like. But that's what I feel is pain in my shoulder.
Speaker 1:
Right, and you're like, right, but it's actually the opposite in this case, right so, where the organ itself is not actually the problem, right? So? And this is we know this now if you actually read the AUA guidelines and this has been in the AUA guidelines since 2011. And so there was redone in 2014, same definition. Redone in 2022, same definition.
Speaker 1:
But it's an unpleasant sensation pain, pressure, discomfort and the key here is perceived to be related to the urinary bladder, associated with urinary tract symptoms or more than six-week durations in the absence of any other identifiable causes. So even in the definition itself, it's that it's perceived to be that that is in like essentially the definition of interstitial cystitis. It doesn't mean that there's anything actually wrong with the lining of the bladder. Now, of course, all through this podcast, we're going to be talking about the 90% of people that don't have bladder pathology. There is about 10% or so a little less than that that actually do have bladder lining pathology. They actually do have ulcerations in the bladder in which their medical treatment does need to be quite different.
Speaker 1:
But also, as we were doing some research for CSM, we actually also found another interesting study that said that if your patient is under 50 years old, it's even less of a chance. So it's even there's only a 4% chance that if your patient's under 50 years old, that they have hunter's lesion. So the vast, vast, vast majority of patients that you're seeing, it's actually really rare. If you have a patient with hunter's lesion, it's like oh my gosh, you have hunter's lesion. This is crazy, like this is very rare.
Speaker 2:
And that's one of the reasons that even the 80-way guidelines. Now there is no diagnostic test for IC. So doing a cystoscopy is not going to rule in or rule out interstitial cystitis. That's a big myth that I know I hear all the time on the phone at Public Sanity. Well, you know they had this cystoscopy and they said my bladder looked angry, so I had IC, or I haven't been diagnosed with IC yet because I'm waiting for my cystoscopy and both of those are incorrect. Like there's literally no test that can confirm interstitial cystitis, there's, you can rule out other things. So it's not a not-valuable thing to do, Nicole, but it's not like they should be waiting around for a cystoscopy because, like you said, if they're under 50, 96% of them are going to have a totally normal looking bladder.
Speaker 1:
Yes and so and. But here's the thing that just really gets under my skin too. It's like nails on a chalkboard to me. It's like I understand that patients could be confused by this, can have misinformation, but what I'm really passionate about y'all is that for us, as medical providers, who are primarily the best people to treat this condition interstitial cystitis, bladder pain syndrome we're literally the best specialty to treat IC and therefore we cannot be the ones to continue to perpetuate these myths and to continue to perpetuate straight up full on incorrect information. And so this podcast. I want you to pledge to yourself today that you will no longer think of IC as a bladder condition. It is a pelvic pain condition that has bladder symptoms.
Speaker 2:
That's it.
Speaker 1:
And when we start to look at interstitial cystitis as a pain condition first, the priority of treatment interventions and things that we evaluate in that person are categorically different than if we look at it as a bladder first pathology problem.
Speaker 2:
So talk to me about that. How does that actually? Well, before we get into the nitty gritty there, I want to actually read a quote that totally reinforces what you were saying, nicole. And then I want to just have you guys if there's a couple of you out there who are like I don't know, everybody always talks about it being a bladder condition, and they're always have been to a urologist. And why would they go to a urologist if there's nothing wrong with their bladder and all of the different things that this myth has led to?
Speaker 2:
This is a great quote from Dr Kenneth Peters, who's the head of urology at Beaumont University, one of the leading experts on IC, and this is like decades ago said, only a fraction of patients with the key symptoms of IC slash BPS. So urinary frequency, urgency and pelvic pain have ulcers within the bladder. As many of the patients who are diagnosed with IC are not found to have bladder pathology, as the name implies. This is a urologist, remember but rather pelvic floor dysfunction. That the bladder is often an innocent bystander to a larger process means that as clinicians, we must be thoughtful and astute about our diagnostic process. Right? This is a urologist saying I'm looking at people's bladders and there's nothing wrong there. This is a pelvic floor thing that's going on for the vast majority of folks.
Speaker 2:
And then, as we've just talked about it in like patient language, like how to explain this or ways that kind of prove this to you, if you're not going to take Nicole's word for it or the research for it but the majority of people with IC have symptoms that have nothing to do with the bladder painful intercourse, low back pain, hip or groin pain, all of that stuff, gi stuff. Right, that's not related to the bladder. And if IC was a bladder condition, all of the bladder treatments that we give to all these poor folks would work right. If you have a bladder lining problem and you inject the bladder with lidocaine that numbs the bladder lining, you should experience relief, even if it's temporary, right? If you went to the dentist with a tooth and they injected that area with lidocaine and it was still hurting, you'd be like you injected the wrong area because you literally numbed it and it doesn't work.
Speaker 1:
Yeah, this is where it gets just really interesting, and the way that this whole thing has perpetuated throughout the whole history of the condition. It's like we keep banging our heads against the bladder wall, right the bladder door, and it's like, right, but like it's not the thing. Oh, we can't find it on Cestoscopy. Well, this must mean it's like this very elusive, very rare bladder disease. It's like, or it's not, about the bladder. You know, we keep doing all these bladder-centric treatments and it's not working. Wow, this condition must be so rare and hard to treat.
Speaker 1:
Maybe the more likely, the more likely scenario is that we're like treating the wrong thing. But this is where, again, we as practitioners have to change the lens by which we look at interstitial cystitis as not a bladder condition but as a pelvic pain condition and treat it that way accordingly. And so now what we are going to be looking at are things like what's perpetuating the pain in these folks and what's perpetuating the bladder symptoms? Because we know that it's very likely not the person's bladder, there's nothing wrong with the organ. And so I feel like if we can't get straight on that, then we can't expect our patients to, and if our patients can't get straight on that, then their nervous system and their bladder pain is just gonna continue to perpetuate. So we have to be the ones that are completely understanding this, that can educate our patients on it, and because we're gonna look at it through this different lens, we're gonna change the way that we view interventions.
Speaker 2:
Well, and that's one of the reasons that if you look at the AUA's guidelines that pelvic floor physical therapy is the only thing that is given an A grade. You look at all of these bladder focus. I mean this is just like logic 101. It drives me a little bit crazy just looking at this as an outside observer.
Speaker 2:
Like we have one treatment that works really, really well and a bunch of bladder focus treatments that don't work well at all, like the leading oral medication for bladder conditions, for Elmiron right has been shown in three of the five studies it's been tested in not to work at all.
Speaker 2:
And in the two studies that it was helpful in, it was helpful for less than 33% of people, right, and a placebo was at about 20%. So in reality you could say that maybe it was helpful for like an 11% subset of people at most ever. And yet pelvic floor therapy is working for just about everybody who comes in the door and I love that phrase, nicole. We keep banging our heads against the bladder wall, but that's the truth of the matter and it's really frustrating for patients because they've now been down this road and the only thing they're told at their urology offices the IC diet or Elmiron, or installations, and then, right, they get to you and you have to feel comfortable, basically contradicting a lot of the stuff that they've read on the internet and a lot of stuff that their urologist probably told them, if they're not up to date on their own guidelines.
Speaker 1:
Yeah, well, and I wanna also point out that there's still some relevant research that was done prior to this shift in nomenclature, right. So there's some good studies that have been done that still call it a chronic bladder disease. So it doesn't necessarily mean that everything is like wrong with the research that was done. It just means that they were calling it and their understanding of it was different then. Same things with some of the things, like some of the big medical type internet searches that you can do right now. It's like sometimes it's still called a chronic bladder disease, like. So you can see why people get confused, right, but it's like, well, that website wasn't updated recently. You know, it's a couple of years later. That might take a long time for somebody to actually realize that that needs to be changed, and then you can't change it everywhere on the internet.
Speaker 2:
What's the thing the mug says? Right, nicole? Don't confuse your Google search with my medical degree.
Speaker 1:
Yeah.
Speaker 2:
Right, so, but it is. So how do you recommend that if you're listening to this and you're bodying and you're saying, hey, I'm no longer going to be looking at this as a bladder condition, I'm not going to fall into that trap than maybe the patient or the medical providers have fallen into? How do you say that to the patient when they're so bladder focused? Now, hopefully, if you're listening to this podcast or if you're taking a course course, you know that it's not a bladder condition. But how do you translate that to a patient who's saying, yeah, but it feels like my bladder hurts.
Speaker 1:
Yeah, you validate that and be like I totally know, and then you proceed to talk about all of the reasons why that those symptoms is just your body's way of making you pay attention. So I usually say to folks something like this I say, listen, I totally understand what you are feeling and we are going to really search for all of the reasons why your bladder is really mad right now and it's talking to you a lot. So I say, really your bladder is just an organ that knows a couple of different outputs, it knows a couple of different things and it knows I hurt and it knows I have to pee, and so what we're going to do is we're going to look at all of the different inputs to the bladder that are giving that output that I hurt or I have to pee. And so, for us, we're going to look at your pelvic floor muscles and your inner thighs and the way that the nerves that go to your pelvis and your bladder come out of your spine and your entire nervous system all the way up to your head, and we're going to look at your jaw and we're going to look at your foot and we're going to look at your calf and we're going to look at your sciatic nerve and all these things that can give the input to your bladder that's giving the output I hurt or I have to pee. And so what we know so far is that and this is, if they've gone to their urologist and they've tried bladder-centered medications, what we know is that that input has not been great right.
Speaker 1:
The input of, if it really was your bladder, if those medications that your doctor gave you or those installations that your doctor gave you was going to change the output to be like I don't hurt and I don't have to pee, then those things would be working. But it's still giving you that signal. So there must be something else is going on, and that's what we're here for, that's what we specialize in. So I would say something to that effect broad strokes at the beginning, and then we can get more specific as we go on. But people are kind of understand that like, oh, my bladder can only say two things.
Speaker 1:
I heard, or I have to pee, like that's the majority of my symptoms. And now we have to figure out why those that's there and we've already ruled out a lot of the times, the things that it's not. That's where we can sort of say. Sort of say like hey, your doctor did a cystoscopy and it was negative, guess what. He took a camera up there. He literally looked with a, with a really like specific camera, and looked all around your bladder and he basically said like it looks fine. That's what a negative test means. If there was a bladder wall problem he would have been able to see it and would have diagnosed you with Hunter's Legion.
Speaker 2:
So I love that language. Nicole, I've never heard you, in all the times we've been talking about this, explain it quite like that. But yeah, I think it hits a little bit different, because now we've got Clay and that just totally reminds me. He only knows like one word, which is bye-bye. Right, but he's like the bladder, he. All he knows is bye-bye. And that could mean bye-bye, but it could also mean hello, it can mean good morning, it can mean my teeth hurt and it can mean please chase me around the living room.
Speaker 1:
Right. And so what we have to do is we have to teach it a different output, or to teach it at least that those outputs are not helpful and they're not actually coming from the right place. But then the other thing that I say, to patients too, is, like your bladder right now is hurting because it's just trying to get your attention and it doesn't know anything else what to do. And so it's telling you like ah, I have to peek so that you'll, that's the only thing it knows how to do is it knows how to get urine out. That's it, that's all it knows how to do. And it knows how to tell your brain I hurt. So when you're having those things, it's just telling you that something's wrong and it doesn't know what it is. And we know what it's not. We know it's not the actual organ itself. There's nothing wrong with the bladder.
Speaker 1:
But now it's our job to figure out what is the problem and why. Is it freaking out, right? And is that coming from top down? Is that coming from your nervous system being hypersensitive, so it's more likely to trigger that, or is it coming from the bottom up? Is it coming from pelvic floor? Is it coming from a nerve problem? Is it coming from the way that your hip is moving and causing pelvic floor to be overly tense and taut? Those are all things that could produce that same output. And guess what? We're like the best people to figure that out, because we're physical therapists first, we're pelvic floor physical therapists second, and we can totally figure this out with you.
Speaker 1:
And then people like you could just see people being like okay, there's another explanation, because their worldview has been this is just my bladder, and so when we expand their worldview into, oh, this could be a lot of other things, and now things start to make sense and you can't just say that one time to them. We have to show them with our treatments and our interventions. We have to help them to see change when we intervene in ways other than the bladder. But once we expand their worldview into, oh, there can be other things that are producing this output and I'm in the right place for this specialist to help me fix that. It's like mind blown. Now we got them right. Now we're here, now we're cooking with gas.
Speaker 2:
Cool, so I hope that's been really helpful for you guys. If you want to learn more about treating IC, make sure you join us for that second cohort that launches on February 19th. Get on the waitlist for that. You'll get $50 off. You get access to a live Q&A. We'll send you out all of the information when you sign up on that waitlist. So really appreciate you guys listening. Glad you're here and, as always, we want to keep this conversation going.