Pain related to the bladder is common and can be complicated, but diagnosis doesn’t have to be. In this resource-packed talk, urogynecologist Caitlyn E. Painter, DO, explains how to categorize causes, what to understand about urine cultures and other tests, and the latest evidence on which treatments help patients. Get her experience-based guidance on selecting prophylactic antibiotics for UTI-prone women, an inside look at the urinary microbiome, and a better definition for bladder pain syndrome (formerly interstitial cystitis).
All right. So, uh, we will begin um with everyone's favorite topic, which is dysuria and what to do when it persists. It's frustrating for the primary care physician. It's frustrating for the specialist, and it's certainly frustrating for the patient, um, and can have significant impacts for the quality of life. So I'm, I'm happy to be sharing this information with you today. Um, I have no relevant financial disclosures, um, and as we had discussed in the beginning, I am very open to questions. I can't see you, so it always feels a little bit odd giving these virtual presentations, um, but Hope has agreed to monitor the chat, and I'm always happy to answer questions as we go and really have this be tailored to your needs and create a dialogue about how I can help you. And for the purpose of this talk, we'll be going through really persistent dysuria and some of the causes, both infectious and noninfectious, and some of the things that we can do about it and really what you can do as the primary care physician and how you can get someone started on the on the pathway to feeling better. Um, for this, uh, presentation, I, the, the word women will be used. That's what's used in the studies. This is specifically for individuals born with female genitalia, um, and, and this talk is not necessarily um tailored to the transgender individual. This talk is also not going to review some of the other gynecologic conditions. I may mention them. But it's not going to go into depth or detail about how to treat, let's say, a simple cystitis, someone's first episode, um, or even, um, uh, you know, the specific treatments of, of vaginitis or STDs, but we will talk about, you know, making sure, especially in your patient population, you know, having to rule those things out. OK. So what is dysuria? This is the definition that was given by the International Continent Society, and they've really done an excellent job of trying to standardize definitions and terminologies both for research but also for clinical practice so that we can know what we are talking about when we speak to each other, and I do. Really like this definition as it really presents thinking about the lower urinary tract as not just the bladder and the urethra, but that things can be referring pain to that area. So it can broaden our differential when we're talking about dysuria. So it's a complaint of pain, burning, or other discomfort during voiding. The discomfort may be intrinsic to the lower urinary tract, that is the bladder and the urethra, or external or referred from another adjacent, similarly innervated structure. They say lower ureter here, but we have the uterus and bowel and the myofascia, as we'll talk about later. So moving forward, we'll, we'll talk briefly about infectious causes and what to do and, and the definitions associated with those. And for recurrent UTI, there are many different definitions that are out there, and I prefer the definition that was coined by the American Neurologic Association, and this is also accepted by several other different societies, and it's helpful to have that same definition both for research but also for giving someone a diagnosis, and that is when a patient has 2 episodes of acute bacterial cystitis within 6 months or 3 episodes within 1 year. And the prevalence is very difficult to predict. It depends on the age of patients that you're looking at. It depends on the study, and this data isn't very good because this is often retrospective data and people have defined urinary tract infections in different ways and studies. So it may not be based off of urine culture. It may be based off of just patients. They pick up antibiotics and so it's very hard to actually get the prevalence of a UTI, a recurrent UTI. This specific study looked at 113 college-aged women, and what they found was that 27% experienced at least one culture confirmed recurrence within the 1st 6 months after initial infection. So by, by definition of above, that's 27% of women are having recurrent UTIs. And then of, of those 2.7% had a second recurrence within the same six months. So this is something that you will be seeing in your, in your clinic. Um, so what can we do about it? Well, first is how do we help patients get a diagnosis? Currently, the standard is still a urine culture, um, and I wanted to, to bring this up because we get into this cycle where, you know, maybe for the first UTI you're going off of a dipstick or you go off of patients symptoms, but then we really want to be making sure that we're treating them appropriately, really making sure that it's actually truly an infection, so ordering a urine culture. And for some of these patients that, uh, you know, really they're constantly getting antibiotics, you know, they're calling in after hours, maybe not, you know, even seeing. Uh, a provider, um, and then they're just on these antibiotics. Uh, I will order a standing urine culture so that way they can actually just go leave the sample, um, and then that'll come back to me. And I really try to tell them like let's hold off until we get the culture before giving you antibiotics and then you'll start to see the, the split where you get the patients that truly have recurrent UTI and then the patients that have dysuria, that's not an infectious cause. I wanted to take a minute to talk a little bit about some new molecular methods, and I'm not going to go into big detail, but it's sort of the hot topic within urogynecology or urology right now, and it's this multiplex PCR testing or NGS, next generation sequencing for urine pathogens, and these remain understudied, and I don't, you know, in my patient population I have, I would say a few patients a week asking me for this testing. And it may be that this proves to be fruitful in the future, but it remains understudied at this point, and there are no studies that are actually looking at outcome data. So there are studies looking at standard urine culture comparing it to the, you know, urine PCR testing, and they find that the urine PCR testing is finding more, more bacteria or Candida microorganisms than standard PCR testing, and it tends to find or than standard culture and the PCR testing tends to find things that don't really grow out very well on culture. The problem is we don't know what that means. So you know, if you get this testing, your patient may come to you with like 15 pages report of like percentage of this, percentage of that, percentage of this, and that you don't know what it means clinically. You don't know if this actually has anything to do with their symptoms, and then it can do that slippery slope of now we end up overtreating and these patients are on. You know, long term antibiotics or higher dose antibiotics or antifungals, and we don't actually know if it's helping. And so, so I, this is kind of what I tell my patients like this may be the future. We may get there when we have more studies that are looking at, you know, what is the normal urine microbiome, and, and that's something that is also a shift in thinking. There is evidence of a urinary microbiome. So we used to think that urine was sterile, and urine is actually not sterile, and this is really in its infancy and being studied and very much a hot topic within my field is what is the urine microbiome? What is the difference between controls, you know. Which of these organisms are actually beneficial and protective and which ones are truly pathogens and how should we treat and we just don't know yet so I sort of tell people to, you know, let's hold on this and I don't want to go down that slippery slope where I'm getting you on antibiotics that you don't need and we're getting into that spiral where now we're in antimicrobial resistance patterns. There are studies that show there is a difference between the urinary microbiome between controls of those with pain and those without pain, so I, I think it's exciting. It may help us in future research. And there are studies that show that Lactobacillus within the urinary microbiome, as well as an increased diversity, so a diversity of the microbiota is may be actually protective as, as you know, patients with pain tend to have less Lactobacillus and tend to have less diversity in their microbiota. So when I talk about that too with patients, I say, well, if we're giving you lots of antibiotics, we may actually be decreasing the good bacteria that's in the urinary microbiome. And for the most part, patients are OK with it, but these urine PCR testing patients can actually go online and buy themselves, and most insurance companies don't cover it, but I just wanted to take a minute to talk about it because I think you will, as it's becoming more and more popular and as there's more and more ads out there on the internet, I think you will be getting these questions as primary care providers as well. OK. So this is a picture of the AUA guideline and algorithm for recurrent urinary tract infections in women and, and this is specifically for uncomplicated patients. Complicated patients would be someone who has a congenital malformation, someone who has a condition like Multiple sclerosis where they have incomplete bladder emptying and they're using a catheter or you do an exam and something doesn't quite feel right, those are the people that you should feel very comfortable sending to, to, to us to help you with. But, but it's really the uncomplicated patients, so their exam is normal, they're healthy, they just keep getting these UTIs and And that, you know, I don't know if you can see my pointer here, but, but that's really this side here. So, so once we get them started on antibiotics, what can we do for prophylaxis? And the, the evidence, the evidence is, is tricky here. Every time a new Cochrane review comes out, it contradicts what the last one had said, and it's a, it's a mixed bag. So, Antibiotics are actually, so, so low dose antibiotics are actually the most effective, especially in the younger patient population. And when we're talking about postmenopausal women, and, and I haven't really talked about that because that's not, you know, in general, your patient population, vaginal estrogen is, is very important and very effective in preventing UTI, but in younger patients where you're not worried about a lack of estrogen, Doing low-dose antibiotics is actually very, very effective. Um, and you can decide whether or not they have a trigger. So, uh, in the younger patient population, sex is a big trigger. Um, a common thing that I see is a patient that says, you know, I haven't been sexually active for a while, and then I have a new partner, and I did all the STD testing and it was all negative, but I keep, like, every time we have sex, I get a UTI. And those are the patients that I typically will start them on postcoital antibiotic prophylaxis, and they do really, really well. In some patients who they can't really identify the trigger, we do talk about a course of antibiotics, so a 6 to 12 month course of continuous prophylactic antibiotics, and that's not really a discussion with the patient. So, and in the studies that have been done, it seems that continuous prophylactic antibiotics and postcoital antibiotics. Antibiotic prophylaxis seem to be similar in their efficacy. Um Now, I just said we don't want in the previous slide, we don't want to go down that slippery slope of giving people too many antibiotics when they don't need it. Um, so what are some of the, the non-antibiotic prophylaxis things that we can offer patients and get them started on? So, um, Going back to other things that we can try, D-Mos is a sugar, a polysaccharide actually that has actually some evidence. It depends on the study that you read, but the newer evidence is actually showing that D-mannose can be effective in preventing UTIs, and it's specifically for bacteria that have the little flagella because it, it prevents the adhesion. And so the main bacteria that has that is the E. coli, which is the Number one cause of UTIs and that the DMs prevents the adhesion of the flagella to the urothelium and you want to make sure that patients are getting enough. So the studies look at 1 to 2 g a day and then if you look at most commercial preparations, they're usually around 500 mg. So I often tell people, patients that depending on what they buy, they need to take 2 to 4 of those a day. Um, and it's been, it's, it's very well tolerated, um, you know, for people that you're worried about blood sugar for diabetes, it does not increase, um, their blood sugars. Um, and so that is often something that I will start people on. Um, for the other things that are available, cranberry is, has not shown to be effective. Um, and so I tell people, you know, especially like cranberry juice, uh, that is, you know, it needs to be that without. Sugar and the active component in cranberry that's actually preventing the infection is proanthocyanidins or PACs, and if you look at the concentration of the cranberry, the proanthocyanidins, there's actually Much more proanthocyanidins and other things like chocolate and coffee. So, uh, so cranberry is sort of something of the past. I don't typically recommend it. If you're buying capsules. Um, another thing that's tricky is that the concentration of the cranberry is very, very different within the, the different concentrations. And so I believe that is why we're getting such mixed data and mixed results. Um, the last Cochrane review that showed that there was no evidence to support the use of cranberry. Methenamine um is something that really doesn't have a lot of studies on it and a lot of data, um, and this is used to acidify the urine. The tricky part about methenamine is that it's actually converted into formaldehyde in the bladder. Um, and there's no long-term studies on it. So we actually have no idea what happens when you convert, uh, you make formaldehyde in a patient's bladder. Um, and so formaldehyde is a known carcinogen, so I'm, I'm pretty cautious, especially in a young patient, to get them on methenamine when we don't actually know what it's going to do to the long-term urothelium, and it's actually not that effective. The other thing about methenamine is that It can be tricky for patients in that you actually need to stop it when you're taking antibiotics for an infection because it can make the antibiotics less effective within the bladder itself because of the acidification and it, and it depends on the antibiotics, but one of the ones that it really doesn't work with is, is sulfa antibiotics, so Bactrim, and so that's a very common one that's prescribed. So, so I tend to avoid mephetamine as well. And I would love probiotics to work. That sounds great. I would love probiotics to be the answer, and yet it is not. There's, there's good studies that show that probiotics don't do anything. So hopefully, as, as my colleagues are researching the urinary microbiome and we learn more about that, then we can. To tailor different non-antibiotic treatments to help with recurrent UTI. So currently, I really stick to to D-Mos and, and considering postcoital antibiotics, especially for the younger patient population. I, this is just from up to date and I just wanted to throw this up there because I think this is something easy for you to look up, um, to look at antibiotics and dosing to figure out what you want to start somebody on. Um, and, and this is, I agree with this chart with an up to-date. I typically will start people on nitrofurantoin or Macrobid if they can tolerate it. Um, it's very well tolerated in general, um, and the, it's, the reason why I like it is that it, it doesn't have high resistance patterns. Um, and certainly when we get people with multidrug resistant organisms, there can be some resistance to, to nitrofurantoin or Macrobid, um, but in general, um, Most bacteria are susceptible to it. The caveat being that uh nitrofurantoin is bacteriostatic, not bactericidal. So if someone has, um, you know, pretty significant infection where you're worried about pyelonephritis, it's not something that you would use and then this is probably not something that you're thinking about in your patient population, but in some of my elderly populations, you want to make sure that they have good kidney function so it doesn't work if their GFR is, is less than 60, so I don't think that you're really worried about that as much. The second one is Bactrim. I actually try not to use that because especially with E. coli and especially in this area, I'm looking at um resistance patterns. There's the high, the E. coli in the Bay Area has high resistance to Bactrim. Um, and also Bactrim is uh something that's very good for MRSA and so I don't want to create more bacterial resistance. So I actually try pretty hard to stay away from Bactrim if I can. Um, and I will often use uh cephalexin or Keflex, uh, for, for postcoital prophylaxis. Um, the phosphomycin is really nice. Um, I tend to, uh, leave that for a little bit later, um, because again, there's not that much antimicrobial resistance to phosphomycin. Um, and so I tend to use that as like my secret gun when people uh have developed resistance to other antibiotics and, you know, I sort of reserve and save the fosamycin. Um, it's a little bit tricky because, because it's a, a packet, a 3 g packet of powder that you have to put into a cup and then they, the, the patients will use it like once a week and so it's a little bit harder to remember. OK. So moving on to other infectious causes of diphtheria, I just, uh, with your patient population, I just figured that, uh, you know, I would bring this up and, and you're probably already doing this as uh uh you know, just for any of these patients, making sure that you're getting STD testing. Specifically in this area, gonorrhea has significantly gone up, so that's a, this is a nice picture of the gonorrhea diplococci. Um, but classically gonorrhea, chlamydia, herpes, and, and trichomonas can all create a urethritis. Um, and then for, for vaginitis, some vaginitis. BV doesn't really typically cause a, a dysuria, but anything that, that's, um, you know, infectious in the vagina can certainly lead to a feeling of dysuria, um, and so just making sure you're, you're checking these things off and again, this is a little, you know, that would be another talk of, of how to treat those things. Um, I wanted to pause right here and talk about, uh, another common question and, and, and, uh, controversial topic and which is the testing for mycoplasma and ureaplasma. So these are not tested for in routine urine cultures. You would need to do a specific test for these, um, and I really try to avoid doing this as well. Well, and that's because mycoplasma and ureaplasma are common genitourinary colonizers. They are basically a normal part of the vaginal microbiome in a sexually active, uh, person. Um, and so if you look at, you know, different studies, they'll say, oh, if I, if you should be getting a urethral swab for microplasma or ureaplasma. But in more recent studies, if you do that, it's the detection is not actually associated with irritative voiding symptoms or, or dysuria. And so it's one of those things where, yes, we found ureaplasma and mycoplasma. We think it, we know that it's sexually transmitted, but it's actually what we're finding more and more now is just a normal part of the urinary microbiome. I will have, uh, I, I will have patients that have, you know, gotten tested and then they say, OK, well, I want to be tested again and because I have symptoms, you know, they did a course of doxycycline or, or levofloxacin and they say, well, I want to be tested again. Um, and then in the times when I have done that, oftentimes it's negative and they're like, but my symptoms never went away, and that's what, you know, the new studies are showing is that it's, you know, ureaplasma and micro micro, mycoplasma are actually not associated. With these diphtheria symptoms, it's just, uh, a confounder that we happen to be finding. All right. So moving out of um infectious causes to non-infectious causes, so I feel like this is uh sort of the meat of the lecture and figuring out, you know, interstitial cystitis and, and bladder pain syndrome. So these are the patients that you get that you, they constantly say I have a UTI. You, you actually are doing the testing, they're getting your and they have negative urine cultures, or they're the patients that have had 5 to 7 to, you know, 20. of antibiotics and they're like, I'm still not better, I'm still not better. And this is, this truly is a syndrome, so it really just incorporates a lot of different things and, and, and as pain syndromes go, it, it's very complex and, and, and difficult to parse out where, where people really are and who's really falling into this category. And it's really a diagnosis of exclusion. So, so the current definition of ICE. BPS or we're really moving away from interstitial cystitis to the terminology, bladder pain syndrome. is an unpleasant sensation or pain, pressure, or discomfort perceived to be related to the urinary bladder associated with urinary tract symptoms of more than 6 weeks' duration in the absence of infection or other ident identifiable causes. Um, and this definition is important because it, it's only 6 weeks, so we can give people this diagnosis a lot sooner. You know, if you think about the other diagnosis in my field, which is chronic pelvic pain, that's 6 months, so 6 weeks versus 6 months. Um, and then it's, it, it doesn't actually need to be coming from the bladder, but it's perceived to be related to the, to the bladder. So what do people feel, well, they, they feel dysuria, they feel urinary urgency and frequency, it's very common. Um, another thing in my field that, that I deal with is overactive bladder and if I could draw a Venn diagram, there's the IC patients and the overactive bladder patients and a lot of patients where the two circles overlap. Um, and then bladder pain. So the traditional thought was that they need to have pain with bladder filling that was relieved with voiding. Um, and that is, is a little bit too, too sensitive and too specific and it leaves out a certain subset of population. So it just has to be any sort of unpleasant sensation in the bladder doesn't necessarily need to be with filling alone. Um, and, and a lot of times these patients are waiting a lot to try to help relieve the pain. OK. So The prevalence is very, very difficult to estimate, but In some of the more um The more recent studies, the, the thought is that it's about 2.7 to 6.5% of women, US age women 18 or older will have this diagnosis of ICDPS, and they actually think this is an underestimate because it, on average, it takes about two years for women to get an actual diagnosis of bladder pain syndrome. So they're experiencing these symptoms. They're going through the rounds of antibiotics. They're trying to rule out all of those things and it takes about two years to actually get this diagnosis. Um, and, uh, if you think about those percentages, that's in the US that's 3.3 to 7.9 million US women, that's a lot of women, um. There, it's, it's tricky to figure out where these, these patients fall because patients will have different symptoms um and there's a, there's a significant heterogeneity in the symptoms. And so there's been an initiative within the NIH with the, the, the MAP network um was recently, uh, uh, I guess it was in the early 2000s to specifically look at pelvic pain. Um, and to look at how can we look at pain phenotypes. So the, not the studies on bladder pain syndrome. are, are lacking in a few different ways. One is that because of the heterogeneity of the patient population, The cha the changes in the definitions as well as not really knowing the pathophysiology of it, the treatments are not all that great either. And so this is what the NIH is really trying to work on and trying to figure out, can we actually phenotype these patients? So are there people that are more urgency and frequency related? Are there patients that are more allergic component related? Are there patients that are more immune-related? And that's where the current research is on, on painful bladder syndrome because the hope is that if we can actually phenotype these patients into pain categories, then we can tailor the treatment to them a little bit better and find them a treatment that's gonna work faster. Right now, it's really just a, a, a, a trial by error. You tried this, it didn't work. You tried this, it didn't work. You tried this, it didn't work, and you just kind of moved down the algorithm rather than saying, oh, you have these specific clinical constellation of findings, what can we do to really target that for you to get these patients feeling better faster. Um, we do know that there is a separate, separate process and really, really we think it's an autoimmune condition where patients actually have ulcers and, and patients with ulcerative IC is, uh, what I have pictured here, they have a different disease process. Their symptoms are more severe, and they're often having blood in their urine, bleeding in their urine, um, and they, um, have pretty significant urgency and frequency cause their bladder is not very compliant, so they can't hold that much. Um, and those are the patients that do need a, a cystoscopy and then they're treated a little bit differently. So those would be the patients that kind of get bumped up to a, a subspecialist. And I think that's the challenge of trying to figure out, well, you know, who should I send to you and, and who Can I start? And I would say you could start everyone. We'll talk about some of the first behavior modifications. But when they're having persistent blood in their urine, when they're really debilitated by their, their pain, that's when I would say send them off to the, the subspecialist sooner rather than later so we can decide, yes, no, do they need a cystoscopy? Um, and the whole reason for doing a cystoscopy is to try to see if we can see these ulcers because these ulcers This can be treated in a very specific way. Um, I do not offer uh all of my patients a cystoscopy. So, um, there, and, and it's not necessary for the diagnosis of painful bladder syndrome. Um, it would be necessary to exclude a Hunter's ulcer, but it's a painful procedure. Um, and if you don't see these Hunter's ulcers, it, there's, there's other things called glomerulations which is really just an increase in, in the vascularity of the bladder. That is not sensitive or specific. So there's plenty of patients with painful bladder syndrome that have completely normal cystoscopy findings. And there's plenty of patients that I do a cysto for for whatever reason and I'm like, oh look, they have increased, you know, glomerulations in their bladder. But they have no pain. So that's why I do not, the cystoscopy is not, you know, In the, in the definite diagnosis of IC um However, you know, I, I think it's very reasonable for um the primary care physician to say, you know, this patient is really debilitated, I'm really worried. Uh this doesn't seem like, you know, someone who is gonna respond to some of these things to go ahead and refer them and then we can consider whether they not, whether or not they need a cystoscopy. So again, I wanted to give you a nice algorithm. I feel like it's nice to have these algorithms. This is like from the AUA as well, um, for you to kind of say, OK, where, where do I think this patient falls, um, and what can I do to help. So I would say the bottom side of this algorithm is, is more for the urogynecologist or a urologist, and then the top side is really something that I wanna empower you to, to start. Um, And so that's this real box here. So the behavioral and non-pharmacological treatments, they actually work great. I make all of my patients do this because for all of the treatments that we have for painful bladder syndrome, behavioral modifications actually work some of the best. Um, and then I do think you could try some of the, the oral medications, um, and, uh, the, the oral medications is, is plus or minus, you know, treatment for painful bladder syndrome. Any, any one thing that we have is around 50% effective. So better than placebo but not fantastic. Um, just before I go on, I do wanna mention the, the, the thing PPS is, uh, the, the name for it is Elmiron. Um, and I, I don't, I typically don't prescribe that anymore, um, and I would, I would caution. You to, to be careful in prescribing that because there is um very real and significant data that there is a side effect of, of uh retinopathy that can actually lead to, to blindness. Um, and it's rare, but it is definitely been proven in studies now. So usually when I am offering that to patients, they are like, well, I would rather deal with bladder pain than go blind. Um, and the problem is we cannot predict who it will happen to and once it happens, we can't reverse it. So if I do have patients that are already on it and they're well controlled, then I do make them get a dilated eye exam every single year. Um, so I wanted to move on and, and make sure that I'm saving time to, to talk about other questions but to review some of the behavioral and non-pharmacologic treatments that, that you can start to offer and give you some, some resources that you can actually print for patients. So the first is looking at the IC diet or removing Bladder triggers. Um, and doing a bladder diary. And I think it, and, uh, in, in these pain patients where they're just like, come in with a list of complaints, I say, you know what? Let's, let's figure out what's going on. Here's a diary. Go home, really look at this, look at your life, what's making this worse, what's making this better, and then come back to me with this diary. Um, and, uh, It's so simple and, and yet so effective. This is an example of a specific, a food and intake voiding diary that's specific for pain. So it's, it's, it's looking at um the symptoms that, that patients had. Um, and this is taken off the, the website that I gave you um here which is the IC Association. When we look at bothersome food and drinks, I tell patients, you know, not all of these will fit for you, but some of them will, and they're all the good things in life. So coffee, tea, alcohol, spicy food, tomatoes, uh, fruit juices, artificial sweeteners, um. And I don't, and the other thing that I tell patients is like, once you find your trigger, if you're feeling OK, you could always try to have a glass of wine and see how you do. And then if it just sets you over the edge, then maybe wine is not going to be something that works for you. But if you're in the middle of a flare and you're currently triggered, then this is when you need to back off of those things that are classic ear. Pants to the urothelium of the bladder. And some patients, and this is where we get to that phenotyping again, some patients who truly have triggers, and they can tell you right away what their triggers are. Some patients don't really know. And then you start talking to them and they're like, Well, I take, I drink 15 cups of coffee a day. And you're like, Well, what happens if you take out 10 of those? And they're like, Oh, I feel better. Um, So, uh, so that's where the voiding diary comes in. And then some patients are like, I've tried the whole y diet. I basically drink water and eat toast and I don't feel better. Um, and so I don't tell them they necessarily need to be restrictive. And then on the IC website, there is um guides to how to do an elimination diet. So basically not taking everything out at the same time, doing one thing at a time, you know, giving it a week or two to see the difference in their symptoms so they can actually figure out what their true triggers are. Um, and this can be really empowering for patients and give them some control over what's going on and, and also allow them to see, you know, what truly are their, are their triggers. Uh, coffee, red wine, and, uh, and I would say like the tomatoes, the tomato sauces, tomatoes tend to be the biggest ones that I see. Um, uh, so. You will have patients that won't want to give up their coffee. I don't wanna give up my morning coffee, but you, it's just what they're um willing to live with. And then for the multimodal pain management that was in that box, the evidence for here is really lacking, um, but essentially what the American Neurologic Association has said in their most recent update on the evidence is that there's no evidence for this, but it may be helpful and there's really no harm in trying these things. And so what can you do to help patients in the middle of their trigger to make them, you know, in the middle of their flare. Right. Um, I guess one thing that I didn't say is it's very common for, for painful bladder syndrome patients to have flares, so they're, they're doing great for, you know, 2 to 3 months and all of a sudden they have this flare and they're miserable for about 2 weeks and then it starts to get better and they just kind of go up and down and up and down. Um, and so how do we get them through their flares? So, um, finazopyridine, um, or pyridium. Um or AZO, um, is something that I really, really like to use because you can use it as needed. Um, and, you know, I just warn them it's gonna turn your pee bright orange. It's pretty cheap. You can get it over the counter and it's safe to take. Um, and there are some studies actually looking in, in, in rat models that have looked at, well, why does this work for the bladder? And it does something to the, the, um, Afferent delta fibers in the bladder to decrease pain sensation. So it, it tends to work pretty well for some patients. Um, I try, you know, acetaminophen and NSAIDs can be helpful, um, hot baths, and, you know, putting a hot pack on the lower abdomen. These are things that, um, you know, help some patients, you know, kinda get them through their flare without, uh, you know, adding any increased risk. I'm incredibly, incredibly cautious and pretty much never prescribed narcotics for these medications. Um, they don't tend to help and then it, then it just leads to another whole host of issues. There are nutraceuticals and um I it's, I, I do, well, I will sometimes talk about them with patients and I say just like any supplement, they're not really well studied. Um, there's two that I've listed here, uh, calcium, uh, Uh glycophosphate, um, which the, the name is, is Prelief. Uh, there is actually a pretty decent study on, on that one, and that's, uh, uh, specific, uh, the way that I describe it to, to patients is, uh, it's like Tums for the bladder. So if you know that you have a specific trigger. like coffee or pizza or, or something like that, then you can take this, uh, you know, when or after you've had one of these things that can, and it can be relieving. Um, if there were, there was only one study that it, that was actually randomized and it was, it was a small study but it did show um About 60% improvement in symptoms. So it's some, I, I, uh, in my patients that have tried it, it's been a plus or minus. It's um pretty cheap and, uh, and, you know, no significant side effects. So I, if they have a specific trigger, I always say it's worth a try. Uh, and then this, the second one with all of these different things in it, um, the, I, I know I'm not supposed to be using trade names, but it's a, it's called cystoprote. Um, and the whole idea of this is that these, um, Uh, components are designed to coat the lining of the bladder. So one of the theories of pain and painful bladder syndrome is that the, the gag layer or the glycosaminoglycan layer, the protective layer of the bladder has broken down. And so like instead of leaky gut, it's leaky bladder and so there's exposed pain sensors um because there is a breakdown in the protective layer of the bladder and this is designed to, to coach that. Um, and there, I cannot recommend a, a study on that, but, but it is some, another option. And, and when I counsel patients on it, I say just, it, there, there is not a lot of evidence to support or, or uh refute the use of this. Um, but It's, it's interstitial cystitis and painful bladder syndrome is tricky and there we don't have a lot of good treatments for it, so I do offer it. Um, and then I, I definitely spend a significant portion of my time talking about the, the brain bladder connection, and I often say this is where Western medicine fails us and that we don't, we are not able to always understand the way in which the, our anxiety, our mental health, the stressors of our life are impacting our bladder, and people feel it in different ways. And a lot of young women feel it in their pelvis and their bladder. Um, and so there's a significant Um, component of anxiety related to some of these, these bladder symptoms. There's a high rate of psychosocial comorbidities in patients with painful bladder syndrome, and it's hard to know like, is it, do they have really bad depression and anxiety because they've been living in pain and they haven't been able to get help, or is the depression and anxiety making it worse and it's, and I don't think we can actually tease that out. Um, and it's probably Probably a combination of, of both um and a cycle and cyclical. So the anxiety gets worse, they get to, they start to flare a little bit and then that'll make their anxiety a little bit worse. Um, there is some newer studies looking at, you know, are women with painful bladder syndrome, um, traumatized, and there was a, you know, a, a small pilot study that did show that there was some Provisional criteria for PTSD in these patients and specifically they were looking at adverse childhood experiences and assault, and they did see that association. And that's mirrored in the literature for chronic pelvic pain in general. Um, so trying to treat some of this stress and anxiety is important. and UCSF used to have during the COVID, the The pandemic, we have an integrated medicine center here called the Usher Center. They were giving free mindfulness webinars, which was, which was great. But I, I think that that has gone by the wayside now. Um, but I imagine at UC Berkeley, there are options for yoga or meditation or mindfulness. Um, and, and even if it's not, um, Not necessarily helping the bladder itself. It can help the anxiety that goes along with it and also give, uh, give these, um, patients, um, tools to help with some of the catastrophizing that comes along with it where they just like can't stop thinking about their bladder to give them a way to kind of escape that cycle where they are not leaving the house because of their bladder, they're not doing anything because of their bladder and, and give them coping mechanisms really. Um, and they were starting to study that as well. Um, there, there was a study that looked at, you know, um, uh, a specific, I think it was an eight-week mindfulness-based stress reduction program. And uh it did show benefits in some of the validated questionnaires that look at bladder pain syndrome. So I definitely address this with the patients and when you talk to them about it, they'll say it's completely related to my anxiety or they'll say, I feel this pain in my bladder, but I really actually think it's all in my head. Um, and I've, you know, I validate them. It's not all in your head. You are feeling it in your bladder and there is a connection between your mental health and your bladder pain. Um, and just to feel it, just hearing that, I think can be helpful for those patients. Uh, and then this one is myofascial pelvic pain. I could give an entire, uh, uh, other grand rounds on this, but I wanted to put it in here. Um, myofascial pelvic pain is very, very, very common in, in, in women, um, and in women with pain disorders. Um, and specifically, we have found that like 70-80% of patients with a diagnosis of painful bladder syndrome will have myofascial trigger points on exam. Um, and so this is where, uh, a pelvic floor physical therapist, a good one, is worth their weight in gold. I love our pelvic floor physical therapists here at UCSF. They're happy to see. Your patients, um, and they really, really, really help these patients. Not only are they working on the, the, um, you know, doing actually internal work to release these, these tight muscles and, and triggered areas, but they're also teaching home exercises that these patients can do at home. Sometimes, uh, you know, here at UCSF they do some Zoom visits. There are many actually private practice public floor PTs in the East Bay. Um, the one thing that I would say about private practice PTs is they don't always accept insurance, which can be challenging, so they, um, you know, they'll send a super bill and it can just get, get really, really expensive. Um, I do know at Alta Bates, uh, they do have a pelvic floor PT that, uh, or a pelvic floor PT group that does accept insurance. Um, And uh and they'll often do breathing um and relaxation exercises, um, and uh essentially a little bit of meditation to help these patients. Um, and so I would say the majority of my patients with painful bladder syndrome are getting into pelvic floor PT at some point. Um, and it's really unclear, right? Is it, is it the bladder pain that then caused a reaction in the muscles to tighten, you know, that's what our body does to pain, we tighten up, um, or is it that the, the, uh, tightness of the pelvic floor muscles is what's causing the, the bladder pain, um, because, you know, you're kind of squeezing on those uh tiny little um nerves that are going to the side of the bladder and the urethra there. I mean, the urethra is essentially encased in pelvic floor muscles. And it's, and it's really, it's really unclear, and I don't think it matters because, um, in, in any pain syndrome, it's usually multifactorial and people are gonna get better if we treat all of the components that are leading to their, their pain syndrome. So if you can find a pelvic floor physical therapist that you like and you refer to, they are worth their weight in gold. There's so many uh urologic and gynecologic conditions that can be treated with this. And it's, you know, it's invasive in the fact that it's um often an internal work, um, but it's, it's, there, there's really no, no downside to it. All right. And then I just wanted to end with uh this slide here. This was taken from the um the chronic pelvic pain, um, the IPPS this is taken from their, uh their site. And I really like it and because I, uh, to, to, to talk about pain in the pelvis, you cannot, uh, it's a very, very hard and complex and all of these things go together, you know You know, I can't tell you how many IC patients I have say, oh, is this related to my fibromyalgia? And fibromyalgia is sort of a catch-all for pain. They often have migraines. One of the, one of the, uh, treatments, you know, once they get to me that I can offer is actually Botox injections into the bladder. Um, and, and then I, I find out that they're already getting Botox for their chronic migraines, and so we're kind of spacing it out with that. Um, the, uh, it, it's, it, the bladder. Bowel often go together. So, you know, I'm having them see my GI colleagues for, for their irri irritable bowel while they're seeing me for their bladder and often if the bowel gets worse, then the bladder gets worse and, and that has to, to, a lot of that has to do with central processing. Again, a whole other talk I could give on pain. Um, but, uh, you know, there's, as, as we get more pain inputs into the pelvis, it leads to, you know, the, the, the gait theory in the pelvis. Uh, you need less of a stimulus to start to feel pain and so for these patients that are already sensitized and have the central sensitization, it can take very little to kind of put them over the edge and to be into a flare. So If the, if your patient is Presenting with the, you know, the, the classic IC patient where I have a UTI, I have a UTI, and it's negative culture, negative culture, negative culture, or antibiotic, antibiotic, antibiotic and not getting better. I do think it is very reasonable for a primary care provider to say, you know, I think this is painful bladder syndrome, and these are the things that we can start you with, and if you're not feeling better, then we can go ahead and refer you to a specialist to see if, to see if there's anything else that they can do. Um, and, uh, I know that, uh, especially with my colleagues here at UCSF that deal with a lot of endometriosis patients, um, oftentimes getting that diagnosis can be very validating for these patients that are kind of living in pain and not really, you know, feeling a little bit lost or like it's all in their head, um, and then they can think about what they need to do to be feeling better. Um, and then this last slide here is just some uh resources for you, um, that are free on the internet. So the, uh, the AUA, um, both of those guidelines, those algorithms that I gave you both on recurrent UTI as well as on interstitial cystitis, painful bladder syndrome are available. Um, so, you know, you can access it from your computer or you can print it out and put it above your desk. Um, and then And the ICHelp.org is a, a site that I give patients when I do think that they have IC and, and it gives them resources, it gives them a um a, a community. So there's a blog on there um as well as helping them to, to think about steps of treatment. And then the last one here is just the, the Osher Center. They do have Uh, I'm sure you probably have this at Berkeley as well, um, but different classes, mindfulness classes, yoga classes, things like that that you can, um, join on to. Um, and then I think I stayed within time. Hopefully, there's a few more minutes for questions here. I'm happy to answer any questions and then if there's further questions, you're welcome to email them to me. I'm happy to answer those as well.
