Welcome to the Augs Fellows webinar series. I'm Dr. Eva Welch, moderator for today's webinar. Today's webinar is interstitial cystitis, simple tips to manage a difficult condition by Dr. Jeffrey Clemmons. Dr. Clemmons will present for 45 minutes, the last 15 minutes of the webinar will be dedicated to Q&A. Dr. Jeffrey L. Clemmons is a nationally recognized urogynecologist and pelvic reconstructive surgeon, a physician in academic medicine with over 25 years experience teaching medical students, residents, and fellows with several teaching awards. He retired as a colonel from the U.S. Army Medical Corps in 2012 after 21 years of service, the last 10 years as chief of urogynecology and pelvic reconstructive surgery at Madigan Army Medical Center between 2002 and 2012. Now he works with the multi-care health system in Tacoma, Washington since 2012 with an academic appointment as clinical associate professor at the University of Washington, providing minimally invasive vaginal and robotic surgical care. He's actively involved with the American Urogynecologic Society, the Society for Gynecologic Surgeons, and the Seattle Gynecologic Society. Before we begin, I would like to review some housekeeping items. This webinar is being recorded and live-streamed. Please use the Q&A feature of the Zoom webinar to ask any of the speakers questions. Use the chat feature if you have any tech issues. AUG staff will be monitoring the chat and can assist. Dr. Clemmons? All right. Well thank you for that nice introduction, and let's go ahead and get started here. So it's five o'clock my time, I'm sure some of the audience is at a much later time. So we'll get moving through this. So basically our objectives are, let's try to go over some of the pathophysiology of interstitial cystitis, recognize the symptoms, list the differential diagnosis, describe the diagnostic workup, and list various treatments. I've kind of designed this not exactly at the advanced practitioner level, more it's probably best for, let's say, residence fellows or young attendings, as opposed to someone who's got years of experience, because this is just a lot of basics and sort of ways to get to the best, most efficient type of treatment for these patients, because it's easy to get sort of lost in the whole drama of taking care of interstitial cystitis. All right. So the definition, the 2011 AUA guidelines describe interstitial cystitis as pain, pressure, or discomfort that's related to the urinary bladder, and it's associated with lower urinary tract symptoms, such as urgency, frequency, and nocturia, over six weeks duration, and in the absence of infection or other causes. So it's a diagnosis of exclusion. Interstitial cystitis can be difficult to manage. There's lots of trial and error involved. Patients have different types and severity of symptoms. I think the best goal is to really try to break it down into easy-to-identify symptoms and treat accordingly. I always try to think of there's lots of different variations of interstitial cystitis, almost like, you know, Baskin-Robbins 31 flavors. There's just a lot of variations, and you have to just kind of adjust it for each patient. So signs and symptoms. You've got urgency. I mean, anyone who's in odds knows this. Urgency, frequency, defined as eight or more a day, nocturia, two or more voids at night. Pain can be variable. It can be chronic pelvic pain, can be bladder pain, classic that it's worse when full, better after voiding. It can be urethral burning, can be pain during or after sex. Some women will describe that their symptoms worsen during menses. Classically, women will come in with urinary tract symptoms with negative urine cultures, and in terms of the pain, it can be any or all of those listed there, and in terms of all these symptoms, it can be any or all. But I mean, obviously, if the patient just has only chronic pelvic pain and doesn't have any of these other urinary symptoms, it's not likely to be interstitial cystitis. It doesn't necessarily fit the pattern. I always try to sort of teach the concept that there's three really significant overlapping conditions. This helps you sort of get to the heart of the matter to try to discriminate it, and these conditions all have urgency, frequency, and nocturia, and so what discriminates them? So overactive bladder does not always have urgent continence, but if it does have urgent continence, you might lean more towards that, but certainly some people will have overactive bladder with urgent continence and interstitial cystitis. Those patients exist. Interstitial cystitis is more of a pain-dominating condition, again, of the bladder, urethra, or pelvic area in general. You might notice glomerulations on cystoscopy, but cystoscopy isn't required to make the diagnosis, and I wouldn't say that that's 100% sensitive and specific by any stretch when you see those findings, but they are classically described. For urinary tract infection, again, it's an abnormal UA with the urine culture, but with interstitial cystitis, you can sometimes see red cells or white cells, and certainly those patients can get bladder infections. And it's important to try to sort of separate that out. What talk would exist without a prevalence study slide? Anyway, on the right side, you'll see the prevalence varies from, that's about 0.006 to 0.02 to 0.5 to 0.8, and the other one is 2.7 to 6.5%. My understanding is the interstitial cystitis is classically sort of described as maybe about 1% to 2% of the population, but you can see different ways of evaluating it over the years to come up with different prevalence studies, and obviously the definition is going to matter as well. Pathophysiology. Well, we know it's not terribly well understood. We know that it does coexist with other chronic pain syndromes, and it's good to get an idea as you're interviewing patients if they have these conditions, IBS, fibromyalgia, migraine, endometriosis, velvodynia. And there's possibly some different conditions with distinct etiologies, and what I mean by that is I think there's some slight differences between I see patients that have bladder epithelial pain versus chronic nerve pain versus pelvic muscle pain. I mean, they're all sort of lumped together, but they might be treated a little differently in terms of what the medicines you might want to use. And there can be inconsistent triggering events. Sometimes there's none. Classically, there's a preexisting UTI. It could be surgery or pelvic trauma. I've certainly seen some of these conditions occur after like a complicated hysterectomy and then they get referred over for that. And there's an inconsistent treatment response. So it's not the easiest condition in that regards. As far as etiologies, several have been explored. Initial investigations were looking at inflammatory, infectious, autoimmune. Those didn't really pan out. There's a lot of evaluation looking at mast cells and how they degranulate and cause histamine release and that damages the bladder mucosa. That's sort of an allergic type investigation. We know that there's definitely some epithelial dysfunction, at least in some patients where the glycosaminoglycan or gag layer no longer protects, allowing potassium to leak through. And antiproliferative factor is more seen in patients with IC. And neuropathic pain can be visceral and or central. We'll talk about some of those farther on down the line here. As far as the etiology, you've probably seen some variation of this type of slide before where there can be a bladder insult leading to some epithelial damage, leading to potassium leaking into the bladder wall and then activation of C fibers and release of substance P. And if chronic, this might become a neuropathic pain. There can be mast cell activation and histamine release, which feeds back on this as well as triggering more injury. So it's kind of a cycle, obviously. This is a picture to try to illustrate the glycosaminoglycan layer. You've got your epithelial cells here at the bottom. The glycosaminoglycan layer is sort of a protecting layer along the bladder. Easiest way to think about it is like in the stomach, you've got the mucous layer that protects the acid from essentially dissolving the stomach. In this case, this layer protects the urine from irritating the bladder because, I mean, just imagine the concept of diaper rash, the urine is acidic and it's irritated. And so this tries to help protect it. And we think that this layer is damaged in women with interstitial cystitis. This is trying to illustrate normal mucosa over here versus maybe there's a defect in the epithelium on this patient with interstitial cystitis. If you haven't ever seen this, you just have to look and do enough cystoscopies in the OR. You won't see this usually on an office cystoscopy, but you'll see linear cracking. You'll see, it's essentially like a paper cut. So that's the disruption of the epithelium here and here. You'll see this when you do hydrodistension, sometimes you'll see cracking of the epithelium. So I mean, imagine the concept of, if you have this, it's like having a paper cut on your hand. And then if you had urine on that, it would burn it, you know, or lemon juice, it's obviously more acidic, but it's the same idea. That's why it's irritating. Neuropathic pain. So some patients clearly have more of a neuropathic pain syndrome than a truly bladder pain syndrome. I mean, they have pain, but it's generally speaking more often throughout their pelvic area. A lot of times their cystoscopy is really not that, doesn't have a lot of the classic findings of interstitial cystitis. So what I've been thinking in my brain when I see these patients is, okay, you've got bladder pain, but your cystoscopy is totally normal, whereas other patients might have bladder pain and their cystoscopy is really abnormal. And so it's a question of, you know, some patients might have more of the epithelium disruption, like I just illustrated. Some patients might just have pure nerve pain, some might have both. But so with nerve pain, you can get neurologic upregulation of the pain nerves and it results in bladder pain. So you can have increased activation of the bladder sensory neurons or increased activation of the CNS sensory neurons. This is described as potentially a future diagnostic test, this antiproliferative factor. This has been talked about for quite a long time. I mean, I'm honestly surprised that I haven't really seen it pursued clinically or that hasn't manifested clinically, or if it has, maybe it hasn't reached a coma yet, but I have yet to see this as a way to diagnose interstitial cystitis. But the idea is that you could, because it's produced by the interstitial cystitis urethelium. Again, it might be the kind of situation where it's not present in all patients. So it might not be, you know, as good a sensitivity and specificity, although in this study it was anyway. So for the differential diagnosis, what I have listed on the one side on the left, these are more urinary conditions and these are more gynecologic conditions. We'll just read through them quickly. So there's overactive bladder, urinary tract infection, bladder cancer, bladder stone, urethral diverticulum, urinary retention, urethritis, radiation cystitis. Obviously they can all cause overactive bladder symptoms with some pain symptoms, which is essentially what interstitial cystitis is. On the right, other gynecologic conditions, pelvic mass, endometriosis, pregnancy, sexually transmitted diseases, prolapse, vaginitis, velvodynia, urogenital atrophy, pelvic floor spasm. Those can also cause overactive bladder symptoms and some pain symptoms. So you always have to kind of exclude all of these before you can make the diagnosis. So patient history, classically patients coming with pain or pressure or discomfort or spasms, usually localizing with the bladder or urethra, sometimes the supracubic area. Usually I try to get a sense of if it's worse with a full bladder and improves after voiding or sometimes I'll have pain during the act of voiding. That's more of a urethral pain. And then they'll have overactive bladder symptoms, obviously the frequency nocturia, urgency, not usually with urgent continents, but it's certainly possible. But if there's a lot of urgent continents, I'm going to start thinking they have more of an overactive bladder condition. Recurring UTIs, but with normal UAs, that's classic situation of patients coming in. Like you'll probably get referrals for recurring UTIs and then it's, you check all the UAs and they're all normal. So, you know, it's not that, and it's going to, you should think interstitial cystitis when that happens. Dyspareunia can be due to many, many conditions, but if you just imagine if you were to do a pelvic exam on these ladies and you put pressure against the bladder, they usually hurt. So with intercourse, it's going to put pressure against the bladder and it's going to hurt. Flare triggers can be menses or intercourse or just stress. And a lot of times they come in and say, you know, like if you acknowledge their symptoms and tell them that you think you know what it is and that it's interstitial cystitis, they'll often tell you something along like, oh, well, I'm so glad you're acknowledging this. I've always been told nothing can be done or it's all in my head. That's pretty common theme among these patients. I tried to put down what I thought are some key questions to ask interstitial cystitis patients. I find these to be helpful in my own practice. So we'll go through a couple of these, nothing very complex, but they just kind of help you get to the heart of the matter. One of them is what happens if you try to hold your bladder because if a patient gets a lot of incontinence, it strongly suggests overactive bladder. And if they describe pain that suggests interstitial cystitis, it's a very basic question, but it can help me kind of get to the heart of the matter. And furthermore, if they have a lot of urgent comments and you do think it's interstitial cystitis, it's reasonable to add oxybutynin or another overactive bladder medicine to their treatment protocol. I always ask them to rate their pain on like a zero to 10 scale and I'll ask them to rate it in several situations because sometimes patients have a lot of drama and they're like, you know, I'll ask them to rate their pain when they have a full bladder and they might say it's like 10. I'm like, okay. And they're sitting there comfortably in the office and I'm like, okay, well tell me what it is right now. You know, ideally they don't say 10 because they're clearly not in 10 out of 10 pain. Hopefully they give you a different number so that they're able to discriminate that. But I want to try to get a sense of what's their pain now when their bladder is full, when they're having sex, when they're having menses. As a general rule in my brain, what I'm thinking is if it's in a mild range, which is like zero to three, I'm going to probably try to manage them simply with things like peridium or azo and a bladder diet. And if it's more moderate or it's long, more days of the month than not, then I might add a neurolytic pain med like gabapentin or amitriptyline. We'll get to treatment later, but these are just some ideas that I already have in my brain as I'm asking these questions and if it's severe, I'm thinking, okay, we can't get this lady under control with just waiting for gabapentin to kick in. We might start off with all of this plus bladder installations to really try to break the pain cycle. But that's, I think, a simple strategy to look at. Is it something you really need to go aggressively or is it something you don't need to go aggressively? Then I usually ask them how long do these flares last? When you get a flare, does it last for a few hours, does it last for a few days, does it last for a few weeks? And I've heard all of these different answers. Every patient's different. And how often do they get flares? Do they get them daily, weekly, or monthly? And ultimately, I want to get a sense of how many days per month they might have pain. Is it more like zero to five days a month? Maybe they just have a few days of pain triggered by their menses or is it 20 to 30 days a month and they're having pain most days and they're probably having some neuropathic pain. In that case, they probably are having a severe situation that they need the neurolytic medication added. So, again, at the bottom I wrote, if they're more on the mild end, they might just need peridium and if they're more at the severe end, they might need gabapentin or amitriptyline. Concurrent conditions that can go along with this. There's a lot of association with drug allergies or hypersensitivity. Probably relates to the idea of the mast cell situation. You'll see on some patients, they might have five, 10, 15 allergies to medications. It's remarkable. Another thing I didn't, well, I guess I did write, I wrote hypersensitivity. What I mean by hypersensitivity isn't the sense of an allergy, it's just that really low doses of drugs can affect them sometimes. And if you get that history, just modulate your doses down. So if you're thinking you want to put them on like, let's say gabapentin 300, put them on gabapentin 100 and work your way up. Same thing if you want to do amitriptyline instead of like 25, you might put them on 10 and work their way up. Because if they just get nothing but side effects, then they're not going to continue it and they're going to say that that medicine fails, but maybe they just needed a lower dose. So it's kind of an important thing to keep in mind is that you sometimes have to go low on some of these ladies. But the trade-off is that if they ultimately needed like gabapentin 600 or amitriptyline 50, it's going to take you a lot longer to get there if you're starting at 10 or 100 to get yourself up there. Anyway, other concurrent conditions, sexual dysfunctions, really common. Depression, anxiety is really common. Decreased quality of life, same thing with impaired sleep or inability to work. Some UTIs sometimes, chronic pain disorders, we just mentioned that earlier. There's a lot of patients that will have coexisting fibromyalgia, IBS, migraines, endometriosis and such. A pelvic exam. You can gain a lot of information just by being sort of very careful and deliberate with your pelvic exam. And what I mean by that is, I've kind of listed it over here, you might start with like a Q-tip just to the mons, the inner thighs, the perineum. For the most part, that should be non-tender. And you can move in towards the labia majora, probably still non-tender. Labia minora, probably still non-tender. You might touch around the skin, around the clitoris or around the urethra, around the atritis, you might start to get some tenderness, maybe yes, maybe no. Some patients, you know, if you insert one finger and press up against the urethra, some patients are tender. More often they're tender as you press up against the bladder. You can push down against the rectum, that should be pretty non-tender. But you might feel a lot of spasm on the levators, which are located posteriorly. You might have some tenderness on the cervix. That's really tricky because the cervix is right adjacent to the bladder, so it's hard to discriminate if they're tender on the uterus, I mean on the cervix and on the bladder. But if you just kind of gently push each of those areas, you'll get some information. Then I'll also separately push literally on their pubic bone, because that shouldn't hurt at all. And then I'll push just on the other side of the pubic bone, which is going to hit the bladder from above. And they often will have some tenderness. And this is before I've even done the bimanual. If you just go whomping on to a really aggressive bimanual exam, you'll get none of that information. I wouldn't do this with every single patient in the world, it'll take you forever. But the patients with interstitial cystitis or other pelvic pain syndromes, just go slow and you'll gain a lot of information. Well, this is kind of what I just mentioned, so I'm not going to go through this whole slide again. But again, it's going to typically be tender, super pubic, the urethra, and often it's more pain from a catheter than from palpation. And you might say, well, I use a catheter on these women. And I would generally agree to that statement. Sometimes the answer to that would be, obviously you might do it to check a postpartum residual, but it can be actually clinically useful to know for two factors. Because if you're thinking about doing a cystoscopy in the office versus in the operating room, if they have extreme pain from a catheter being pushed through, you're probably not going to want to book them for a cystoscopy in the office. They won't tolerate it, probably no matter how much lidocaine you use. Same thing if you're thinking, oh, I'd really like to do bladder installations. For women that have a lot of bladder pain, not too much of an issue. If they have a lot of urethral pain, it can be really challenging to try to do a bladder installation. So don't think of me as like putting a catheter in and just try to torture them. It's really to try to figure out if I'm thinking of doing one of those two treatments, it can be quite helpful before you book an appointment that you just have to cancel. So think about that at the time you're seeing them because it's useful information to have. And if you explain it to patients that way, they're fine. And I just tell them, look, if it's too tender, we're going to stop. You just tell me if you can breathe through it or not, because that's helpful for future treatment plans. Anyway, tenderness, again, of the bladder, the levators, the cervix, we talked about that. So for the initial workup, it's always good to check the post-void residual, again, catheter or ultrasound. And again, I wrote it right here, catheter. It's really for feasibility of office cystoscopy or bladder installations. That's good information to have. Obviously you're going to want to check a urinalysis and urine culture. Typically you're going to expect it to be normal. They can get UTIs. And as I said, people with interstitial cystitis, they can have, from the inflammation, they can have white cells, red cells, and leukocyte estrogens. So that's a thing. They can definitely get that. Avoiding log can be useful. Just depends. Some patients, they don't really need to do avoiding log in the classic sense because you can get an idea of it, but it doesn't hurt to get one. It doesn't take much effort on your part. They'll fill it out for you. But I mean, obviously if they're peeing every 15 to 30 minutes versus every three or four hours, that's a huge difference. An STD screen, I don't get that too often because usually that's been addressed, but if it hasn't, that's something to consider. Urine cytology, I don't get very often, but if it's an older patient and I'm worried they might have cancer, I might screen with that. It's not a really good screening test, but if you're really worried, like say it's late in their 60s and smokes a lot of tobacco, it wouldn't hurt. Cystoscopies, again, not required for diagnosis. And it's a question of, are you going to do it in the OR or in the office? It's reasonable to really try to make sure you rule out bladder cancer in high-risk patients if there's a lot of tobacco use, if they're older, if they have any chemical exposures. Cytology and cystoscopies, the easiest way to rule that out. So I have cystoscopy with hydrodistention listed here. I would imagine most of you know how to do this, but just to go over it real quickly, you're in the operating room, they're under anesthesia, you fill into capacity, you wait two minutes. The first look, it's usually normal during that time that it's filling. Before you get to capacity, try to see if there's bladder lesions or if there's hypervascularity. Hunter's ulcers are really not very common and they look just like a bladder biopsy site. But if you see it, it's actually pretty interesting. Then you drain the bladder. One of the things you might see is what's called terminal hematuria, which means some blood dripping through at the very end. You want to try to measure that bladder capacity. A lot of women with interstitial cystitis will hold like four, five, 600. A lot of patients who are normal should easily hold 900 to 1,000. So it seems to be about half as much volume that they'll hold. I mean, that's not an automatic for the diagnosis. And some of these ladies will have bladder spasms, they'll have detrusor instability, and you'll just sort of see the urine starting to leak around the scope. You might have to hold some pressure against the urethra and the scope to try to fill the bladder to get the hydrodistension effect. Anyway, at that point, you do a second look. And this is where you're going to see glomerulations and when you're cracking, those are reactions to the stretching of the bladder. When I was younger, I used to do more bladder biopsies. I haven't done a bladder biopsy in years unless I see a lesion. If I see something like a growth sticking out, sure, but I don't do biopsies for interstitial cystitis anymore. That stopped easily 15 or more years ago. Interestingly, sometimes these are therapeutic in some patients and sometimes they trigger pain in others when you do a systolic hydrodistension. I probably have a handful of patients, maybe three or four or five patients who I'll do a systolic hydrodistension on about every, you know, maybe once a year because it seems to be therapeutic in them and they can't, the other treatments don't work for them very well. It's really rare. That's not a common theme. That's kind of a waste of resources in the grand scheme of things, but that's all it really works for those three or four patients, so I do it for them. Additional things you can do, you can do a systematogram if there's incontinence. If there isn't, all you're going to do is see low volumes for sensation and capacity because of their IC that won't fill. I personally don't ever do potassium sensitivity tests. They're very painful. I don't really find them to be very helpful. I can figure this out clinically. I don't need to torture them to that extent at all. The pelvic exam's enough pain and I pretty much do a pelvic exam at the first visit and then almost always never again, and same thing when I'm placing that catheter that first time just to try to figure out if I can do an office systole or do bladder installations. I probably would never do that again, so I don't really find it to be too helpful to do repeated pelvic exams. Laparoscopy, if there's chronic pelvic pain and I suspect endometriosis, especially if I'm going to do a cystoscopy with hydrobestintion, the OR, I'm going to do a laparoscopy at the same time. I consider it efficient if you're going to put someone under anesthesia to get both bits of information. I wouldn't do repeated diagnostic scopes. I don't find that to be helpful, but for the first time you're doing it, it's good to get that. I always find it frustrating if I have a patient just sent to me after being evaluated for pelvic pain and they had a laparoscopy and the gynecologist didn't think about doing the cystoscopy because you missed an opportunity to gain more data. In any event, be a good gynecologist. Evaluate for both. That's what I would say. These are findings that you can see on cystoscopy, glomerulations. These red spots, classic. These are just some other pictures of them. Again, you see these on a second look with cystoscopy. Sometimes you might see them pop up as you're doing the first look. They literally can pop up as you're watching it, but that's not as common. Usually they show up later. This is the linear cracking. To see this, by the way, the glomerulations you'll probably see looking straight in at the bladder above the trigone. Linear cracking is usually at the dome right near the urethra. It's probably because it's a fixed spot and it isn't stretching. It's tearing the epithelium. That's where you'll often see linear cracking. It's more at the top of the bladder near the urethra. Anyway, summary in terms of diagnosis, the symptoms, bladder pain, discomfort, urgency, frequency. You want to suspect these conditions that we just talked about, IC versus OAB versus UTI. Your exam is going to help direct you. If you get a lot of pain in the suprapubic urethra or bladder area, you're going to think more about interstitial cystitis. You want to rule out the other urologic and gynecologic conditions that we were talking about. You should have a negative UA and urine culture. Not necessarily, I guess, because if they have a UTI, just treat it, but if they constantly keep getting bladder infections, it's probably not IC. It's probably recurring UTIs. Anyway, I always think you should diagnose and treat for overactive bladder if there's minimal pain symptoms or minimal pain on exam, meaning that if it's really overactive bladder dominating and IC is really minimal, maybe just treat them with oxybutynin before you start going down the path of all those interstitial cystitis treatments. If it's mostly the other, then focus on the IC. If pain is diagnosed, the pain is noted, then move more in that direction. I put up here some referral guidelines just so you have a sense of that. Obviously, if audience here is you're a gynecologist, you already know the guidelines that you're going to want patients to get sent to you for, but you might want to also send them if you find a patient who's narcotic dependent or if they haven't been seen for mental health issues or to your physical therapist, if there's a lot of pelvic floor spasms, you might be making those referrals. Now, we're going to start talking a little bit about treatment challenges. There's no treatment that works really in probably more than about half or two-thirds of patients. I think it's because there's multiple etiologies. There's a lot of variety of IC patients. The symptoms vary, the prognosis varies, and it's definitely worse if there's severe IC. It's hard for patients to grasp the idea that you can't just cure them, that you're basically just treating a chronic disease, but you need to get that point across. You need to manage their expectations. There's limited treatment efficacy data. For the most part, it's a trial of medication and one at a time. If you want to be somewhat efficient, you can order them two prescriptions to save on office visits, but tell them to take drug A for a certain time and then add drug B for a certain time because you need to know which one is improving them and which one is potentially causing side effects. It's okay to give them more than one, but make sure you know how to discriminate that. It's not very uncommon that patients will need several meds, so that's why this matters. Ultimately, you want to ask patients what their goals are. That's a big deal. I always ask them what their goals are. I try to set their expectations. I try to tell them we're going to improve your symptoms. We're not going to cure you. I tell them that sometimes conditions can come and go, and you might have it gradually resolve over time. There are some women who they only get flares lasting a few days, two or three times a year. Those ladies are doing great. They just have what I would call very mild symptoms. They're just going to get flares periodically, but that's not quite the same as the lady that's in pain 20 to 30 days out of every month. Pain control, I tell them we want to drop them down on one level. If it's severe, we want to go to moderate. If it's moderate, we want to go to mild. That's usually about what we're going to do. If you're thinking about it on the zero to 10 scale, seven goes to four, four goes to one. You're going to drop about three points if you're getting a good response. Overactive bladder symptoms, we want to try to double them. It'd be great if you can get from 30-minute intervals to two hours, but you might only get from 30 minutes to one hour. If you can double it, I think that's a success, but if they wanted to go more, you could increase the dose of medicines or give them additional medicines. Another goal usually is that they want to resume sexual relations with less pain. Again, physical therapy can be helpful if there's a lot of pelvic spasm with that. If it's the bladder only causing that pain, then you need to really ratchet down the bladder pain. Then improving sleep, if you can get nocturia down to one or two, that's going to make a huge difference if you can drop it down from four. This is the biggest thing. You can't give narcotics. Just say no. Do not give narcotics to these patients. If they come in on narcotics, just tell them. I tell them I'm not going to manage your narcotics. I don't ever write narcotics unless I'm doing surgery for prolapse or incontinence or something like that. I'll give them. If it's an IC patient that needs a sling, those are not common, but sure, I might give her 10 pills of hydrocodone to use after her sling, but that's about it. If they need pain management because they're taking narcotics, that's fine, but don't start writing them. I'm just warning you. Do not do that. Behavior modification, bladder diet, limit fluids, bladder training, those can all be helpful just like you would for overactive bladder. A diet is a huge deal. I can't believe I did. Oh, I did write it there, but I can't believe I don't have a bigger section on diet. I should have done that, but bladder diet is a really big deal. I always tell patients the killer three is sodas, tomatoes, and oranges. I call those the killer three because I haven't really had patients cure themselves with other foods, but I've had patients cure themselves by eliminating one or more of those three. It makes a huge difference, I think. There's just a lot of acid in those three. Pelvic floor physical therapy if there's levator spasms, psych consult with depression or anxiety, and medications. I'm kind of repeating the theme here. For interstitial cystitis, the medications are amitriptyline or gabapentin for neurolytics, Elmeron or intravascular heparin for urethelium repair. Elmeron, I don't really write any new prescriptions for it. I think I have a couple of patients who have been trying to get off of it who don't want to. Obviously, if you had to have heard of this by now that it's associated with macular degeneration, I'm surprised that... I still get letters from a company that makes it saying, oh, you can still use it. Well, okay, that's their opinion. I won't write it for any new patients. That's my opinion on it. It's really thought to be that it causes that after several years of use. You can probably get away with even up to five years of use, but eight or 10 years of use, I would strongly not recommend that. Analgesics, radium or intravascular lidocaine. I give pretty amount to pretty much every patient with this condition because it's low cost and it's very effective when they have a flare. Overactive bladder medicines, depends on if they have overactive bladder. The intravascular lidocaine with heparin. Essentially, I do these for patients that have severe symptoms. It's usually either they came in with severe pain or they didn't really get any benefit with peridium. It says Elmeron, that's old. There's a lot of different cocktails that can be used. A lot of times it's lidocaine, heparin, steroid. I'm not even sure that there aren't probably a hundred ways you can mix up this cocktail, but ultimately to me, the biggest thing is probably the lidocaine. I think just breaking that pain cycle makes a big deal. Anyway, down here is probably the most important thing. I probably do them weekly for about, let's say four weeks, probably not eight weeks, but if it takes eight weeks, fine. The goal is, what I tell patients is we're going to try to make your pain get better. The first installation, maybe you get two days of pain. Maybe the next one, three or four days. The next one, maybe five or six days. Maybe the next one, we get a week. Okay, fine. Then we're going to go to two weeks and then we're going to keep doing two weeks until you get pain control for two weeks. Then we're going to go to three weeks. Sometimes you can get patients so that they're not needing them anymore. Sometimes they still need them monthly, but that's kind of the goal is to try to get them to monthly. Some patients can't get more than about every two weeks. That's not that common. Usually you can get there. Gabapentin is an anti-seizure drug. It increases the pain threshold. It interrupts pain signals. Typically you might use 300 milligrams three times a day. You might start off once a day and then twice a day and three times a day. You might double it then up to 600. You can go low at 100 milligrams if they're, again, really sensitive. I haven't really seen too many patients get too much more benefit beyond 600. Have I given patients 900 and 1,200 three times a day? Yeah, but usually there's a diminishing return after about 600. I just don't see too many patients who need that higher dose, but sometimes they do. Usually what it is, they start to get side effects at higher doses. That's the problem. Amitriptyline is kind of the same deal. If you think of amitriptyline, instead of 300 milligrams, it's probably more like 25 milligrams to 50 milligrams, one or two or three times a day. The rate limiting factor is sedation. Usually I might have them take it at bedtime and they'll improve their sleep. Anyway, this is information on Elmeron. It's supposed to help repair. This is supposed to be showing a damaged gag layer. This is showing a repaired gag layer. That's the idea that Elmeron is supposed to help repair that. Anyway, moving on because I don't really use that anymore. Treatment of interstitial cystitis in the operating room. Interstim can help, but mostly it's going to help your overactive bladder symptoms. I've had a handful of patients who, um, had, you know, a lot of overactive bladder symptoms with interstitial cystitis, and it did help their overactive bladder, but it doesn't really help their pain. There's some studies showing it helps with pain. I'm not sure I buy that. I haven't really seen it clinically. Botox, kind of the same idea. Um, and this, the risk of retention is, could be a big deal for them because needing to do self-cathing, if they've got a lot of urethral pain, that's going to be tricky, and you probably won't be able to successfully do these in the office. I would just plan to book them in the operating room if they really wanted it. I can't say I've done a whole lot of these in the operating room, but I have. You can try to get them done in the office. It's not wrong to go ahead and maybe, um, have them get a driver and premedicate them with like a Valium and or a Percocet and or a Motrin. Um, and then have them drive them in and drive home, and they can do it in the office. Some patients can probably manage that, but anyway, I don't do a lot of Botox in IC patients. Probably got a couple of them. Um, in-stage treatment, no one really does these, the augmentation cystoplasties and the urinary diversions. I mean, they're listed in textbooks, but whatever. I don't think it's a thing. I don't know anyone that's, I've never seen a patient that's had that done. Um, treatment, again, so the first visit, I give them the aux handout on IC. I talk to them about bladder diet. If they have overactive bladder, I'm going to probably put them on oxybutynin. Why? Just because it's the cheapest and it's the most often covered. If I can do the long acting, I do the long acting. Otherwise, I'll do five milligrams twice a day if they're on like a state plan. Critium, always pretty much right that. If they needed to use it every day, I tell them that's fine. If they need to use it once a week, that's fine, or five days a month. Um, gabapentin or amitriptyline, I typically favor more of the gabapentin just because it seems to be less sedating, but I'll do either one. I can't say I too often have done both, but you can, if they're menopausal, I'm going to talk to them about vaginal estrogen for sure. It can make a big difference. Um, lidocaine gel, if there's urethral pain, I might order them that because it comes, the tube of it comes with that little applicator tip that they can maybe push a little bit of lidocaine in the urethra. So if they're getting a flare, the patients will say it feels like they're, you know, razor blades in their urethra. I just say, try the lidocaine and it'll help. It won't last too long, but it's helpful. And there's not a lot of great treatment options for that. Elmoron again, no longer really recommended. Bladder installations, I'm going to do that if it's severe. Um, consider cystoscopy again, either in the office or in the OR with hydro-extension and again, no narcotics. So I'm going to give you just some, um, basic examples and we'll finish up here. Just some sort of little case scenarios. We've got five minutes left. So one of them would be like a mild IC case. It's maybe mostly overactive bladder. Let's say that she's premenopausal. She's in the range of age 20 to 45 that she's avoiding every 30 to 90 minutes and getting up two to four times at night. And she has monthly flares of mild to moderate pain that lasts just a few days. Let's call that a low pain burden. And you know, her goal is to control her overactive bladder symptoms and her mild IC flares. So I'm definitely going to try her on some kind of overactive bladder medicine. It doesn't really matter which one studies have shown. They're all pretty much similar. Just go with whatever's covered by your insurance plan. It doesn't really matter. Pyridium, just tell her to use those with flares. Bladder diet is going to be huge to help control these symptoms. I'm a big fan of the bladder diet. You're probably going to be able to do an office cystoscopy on this gal because her symptoms aren't that bad and it's reasonable to get one, you know, just as a baseline to make sure there isn't anything wrong. Usually the system is normal, but, you know, it's good just to not mask something that could be there with all these other medications. It's good just to have a baseline system to make sure it's okay. I mean, so why do I say that? I have seen a patient with bladder cancer was being managed for interstitial cystitis and her care was transferred to me. I did a scope and she had advanced stage bladder cancer. So that was disappointing because I don't think she lived more than about a year. So I think it's worth at least getting a baseline look at some point. Anyway, premenopausal. So this next example is moderate interstitial cystitis. So again, let's say that she's premenopausal, same kind of overactive bladder symptoms, but now let's up it. So she has maybe moderate pain. That's like a four to six out of 10 for maybe 15 or 30 days a month. So we'll call her like a moderate pain burden. To me, the goal is really to primarily get the pain under control first, and then we can work on the overactive bladder symptoms. I don't think the overactive bladder medicines are really going to work until you get the pain under control. They'll just be discouraged with the overactive bladder medicine and say it failed. So I'm going to charge on with these ladies and I'm going to give them gabapentin or amitriptyline. And the dose is listed here, like 300 milligrams, three times a day, amitriptyline twice a day. And again, you can dose escalate that from a low dose up to that dose. Just depends how sensitive you think they are with the medicines. Again, bladder diet is huge. Iridium whenever they're having their flare days. I wouldn't bother doing a cysto at least for two or three months because they're just going to be sore, especially if you're thinking of doing it in the office. If they just want to move on towards a cystohydrate extension OR, I'd be fine with that. Just depends. Some patients want to do it in the office. I'm like, okay, we're going to wait two or three months and get your pain under control. Later on, I'm going to add the oxyethanol. I want to get their pain under control first because then I don't think the medicine, the overactive bladder medicine is going to work until their pain is improved. Anyways, that's how I would manage that lady. Let's say it's a more severe patient. Again, young patient avoiding every 20 to 60 minutes, maybe she's getting up three to six times at night. She's got severe pain for 15 to 30 days a month. I want to get her pain under control right away. I might start on her with bladder installations, let's say weekly, like I mentioned earlier. I'm probably going to move quickly with her to the OR to do a cystoscopy with her to extension because I just want to see what's going on in there. If she has symptoms that are concerning for endometriosis, I'm going to do a diagnostic scope at the same visit. At the same time, I'm going to start her on a neuropathic pain med regimen, either gabapentin or amitriptyline and the bladder diet and Peridium. We're going to go all in on that. Again, we'll treat the overactive bladder later. This is the last one because we're just about out of time here. This is a postmenopausal patient. Why am I choosing that? We're going to say her symptoms are about the same, maybe peeing every 30 to 90 minutes, three to five times at night. Let's say that she has mild to moderate pain, but she's got vaginal atrophy. We're trying to look at a patient that has some menopausal changes. I want to try to get her vaginal pain under control with some vaginal estrogen. I'm going to have them use that two or three times a week. I might even have them use lidocaine gel. If the vaginal skin is really sensitive, they can apply that before the estrogen. I give out vaginal estrogen like crazy and I not that commonly give out lidocaine gel for it, but you can, doesn't hurt. In this case, she might need it around her urethra if she's getting a lot of urethral atrophy around the urethral external meatus. I might give her a pain medicine depending on how she wants to deal with that, gabapentin or amitriptyline. I'll probably do a scope in a couple of months after she's gotten her pain under control. Again, bladder diet, peridium, I'm going to do and the overactive bladder med, probably add that once I can get her pain under a little bit of control. Anyway, conclusions, this is the last slide. Again, you want to distinguish IC from overactive bladder, UTI and chronic pain. You're going to treat them clinically. You're going to manage their expectations. You're going to aim for improvement, not cure. The multidisciplinary approach we talked about earlier, definitely avoid narcotics. A behavior modification that's really mostly diet. That's huge. You got to push the bladder diet on these patients. You can make a big impact on some of them. Neurolytics, amitriptyline, gabapentin, those are your friends. Definitely use those. Urethelium repair, so strike out the Elmeron because that's not really a thing much anymore. If they're having a lot of pain, you're going to treat that with intravascular heparin. Analgesics is mostly peridium, or you're going to move on to the intravascular lidocaine and then overactive bladder medicines. We'll end it there. Dr. Clemens, we have about 13 minutes for questions. Audience members, you can submit your questions in the Q&A section below. We do have two questions. The first question is from Aaron Maitzold. How do you decide when to stop filling on your hydrodistension? Well, there's a theoretical risk of bladder rupture. I don't use a three-liter bag. I use a one-liter bag. I'm not aware that you can really rupture a bladder with a liter, but you could with two or three liters. I just put a one-liter bag and never a three-liter bag. I stop filling when it stops dripping. You look at the meniscus where it's hanging. As long as it's flowing, you let it fill. As soon as it stops or just comes to a very gradual drip, drip, drip, then you just stop filling and then just count two minutes and drain. That's how I do it. I'm very particular about the one-liter bag. If they bring in a three-liter bag, I'm like, nope, I'm not going to use it because I don't want to take that chance of getting distracted and not paying attention and I've overfilled the bladder because that is a risk. I don't know how common it is. I couldn't tell you. I've never seen it. I just am not willing to roll those dice because I know that interstitial cystitis patients aren't going to hold more than about 400 to 800 anyway, typically. If they hold a thousand, they probably don't really have the classic version of interstitial cystitis. It's either pelvic pain or it's maybe interstitial cystitis, just pure neuropathic pain. Just basically hang a liter and don't risk it and then just watch the meniscus. That's a long-winded answer to your question. Sorry about that. That's good. We do have another question is, do you have any limits on how many days out of a month they can take peridium? No. I mean, I understand the warning on it is because, you know, oh, we don't want you to mask UTI. We want you to go to see your doctor. I'm not, there's some theoretical concerns. I guess it could hurt the patient in some way or another. I haven't really run across it. I mean, if I have a patient needs to take one or two of those every day to feel better, then fine. I don't think it's really that harmful of a drug. I think there's some possible truth that maybe it loses a little bit of its benefit if they're using it, let's say every single day versus let's say even half the days of the month, you know, cause you kind of just get used to it. But short answer is no, I don't have a problem having them use it every day. Another question is, can you speak to different cocktails for bladder installations? Why you choose your particular approach? Well, I mean, the one that's approved historically is DMSO. I'm not sure that that's really that awesome of a treatment. There was a recent study that came out. I can't remember which journal I saw it in and it was pointing out that the, I think it was the steroid didn't make too much of an impact. I've always thought that the lidocaine makes most of the impact just because I see what it does just on the urethral pain patients, you know, it can just be magic for some of them. So my hunch is that if you're going to flex the cocktail, don't flex out the lidocaine. So I would have to, this is a long answer again. I think lidocaine is the most important element to that cocktail because it's going to just kind of knock the pain out. And that's all I'm really trying to do with that anyway. The steroid theoretically cuts down some inflammation. Okay, great. And the heparin theoretically helps heal the lining of the bladder. Okay, great. Like to me, the biggest thing is the lidocaine. I don't have any data on that other than what I just mentioned for an article that I saw in the last month or so. I just know from my clinical experience that lidocaine makes the difference and people will add bicarb because sometimes they say, oh, the lidocaine burns less if you use the bicarb. That would actually be a really cool, maybe it's been done. I don't know, but if it hasn't been done, that'd be a cool RCT to see whether the pain, you know, like basically lidocaine without and lidocaine with the bicarb to see if it impacts the pain as they're doing it. Cause it can burn a little bit, but for the most part it helps them. So if any of you guys are fellows out there and you want a cool little study, that'd be a fun one to look at. And you could flex out all these different components and do pain scores. That would actually be pretty cool cause we don't have great data on that. No, absolutely not. That's a great idea. From Brittany Roberts, have you had some patients complain of more pain in the first few bladder installations or should they maybe be feeling really more quickly? Well, I mean, you can always get some pain from the procedure itself, whether it's the catheter or whether it's the chemicals, but as a general rule, that lidocaine should ratchet down its pain. What I noticed is that it's just, how long does it last? Last a day, then two days, then four days, then six days. That's kind of how I think of it. So not sure otherwise. To kind of lead off of that question, what kind of tools do you use in order to know improvement of treatment other than, you know, that the pain relief may last longer? Are there any other specific tools you use, sir? To assess pain or to assess their clinical response? Clinical response. Well, I'll often ask them like, tell me your pain on a zero to 10 scale. I just kind of track that and then I'll track how often they're peeing. So essentially nocturia episodes, you know, basically 0, 1, 2, 3, 4, daytime frequency. I don't usually count how many times a day they're peeing. I usually just count it by about how often they're voiding. Like, are you going to be 30, 30 to 60, 60 to 120? You know, I kind of just gauge it that way. It's just, that's just easier for me. So I kind of gauge their, I guess you'd call it voiding interval in the day and absolute number of episodes at night. And then a rating scale of pain, zero to 10, you know, like what's your bladder pain now? What was it before? What's your pain with sex now? What was it before? And they won't remember. So that's why you have to write it down at each visit if you want to have that. So that's mostly what I'm tracking is just pain and voiding because that's the symptoms, right? Frequency and pain. Absolutely. I do have a question for you other than the lidocaine and that you mentioned specifically for patients who are presenting with really severe urethral spasm or pain, have you found other treatments to be helpful in your experience? For urethral spasm, what are the other treatment options? Like just very specific urethral pain within ICBPS. Yeah. Well, I mean, so I would say that you could put the lidocaine in the urethra. That's going to directly help if there is like epithelial or superficial pain of the urethra. It won't help for deep pain. If it's deeper pain, maybe a nerve pain medicine might help. If it's muscle spasm related to that, you might, you know, the pelvic floor physical therapy might help. You could potentially try urethral dilation, probably in the operating room, because you're going to have way too much pain with that. I guess the argument would be, I mean, imagine that like you're making a bicep and the muscles are all contracted and your sarcomeres are all pulled in like this and the dilation might stretch them out. And theoretically, similar to the concept of a massage on a tight skeletal muscle, that's probably as likely to be true as it is likely to be false. I'm just saying theoretically that urethral dilation might work. I can't say that that's going to be a game changer. I'm not sure what else I can think about off the top of my head. Have you tried any like periurethral Botox or anything like that, sir? No, I've never tried that before. That's a thought. I mean, it's hard to say. I guess if you're doing it in the operating room at the time of a cystoid hydrotension, I think if you tried doing that in the office, I don't know, you'd have to let me know. That sounds, they wouldn't sit still for that. Get kicked in the face. And then I was wondering, do you have hydroxazine or sometidine in your medication algorithm at all, or have you not found much use in your experience? Yeah, I should have mentioned, I don't really use the sometidine. I will use Atarax in patients who have a lot of allergies. I kind of meant to put that in there. So if you find these patients that have a ton of allergies, that that's probably going to be potentially helpful, whether it's Benadryl or Atarax or any of those things. I mean, clearly there are some patients who probably do have a more of a mast cell situation going on. I wouldn't say it's one of my primary drugs. It's sort of one of those, oh, by the way, like, okay, you have these allergies, let's do that. Or, oh, you're menopausal, let's use vaginal estrogen, you know, sort of like one of these little sidebar additions rather than a mainstay drug. Absolutely. It's a pretty low risk drug. So, I mean, feel free to play around with it. There's a lot of room for RCTs with all these little things, you know, like come up with some algorithm and then flex drug A or drug B or drug A versus placebo. So if any of you are thinking of a project, you can do all kinds of little stuff with this, I would imagine. I've just learned this from 20 years of practicing, just what works and what doesn't. Absolutely. Well, I do not see any additional questions. Do you have any final thoughts or anything else, sir, before we close out? No. I mean, people can email me if they want. Do you have our connections on the sign up for this, or do you want me to send you my email? And they can, I mean, I can just verbally tell it. You can email me at, probably my work email would be a better one. So it's J L Clemens, C L E M O N S at multi care.org. And you can email me if you have a question. That would be fine. Perfect. Well, on behalf of AUGS, I'd like to thank Dr. Clemens and everyone for joining us today. For a full list of upcoming webinars, please visit the AUGS website to sign up. Thank you so much, sir. All right. Well, thank you guys. Have a good one.

interstitial cystitis

management

pain

urinary bladder

multidisciplinary approach

behavior modifications

medications

bladder installations

chronic condition