Episode 3: Bladder Pain Syndrome (with Felicity Reeves)

Speaker 1 Welcome back to FRCS Eurocast. I'm Harry Ratan, consultant in Nottingham. Good evening, Sophia. Speaker 2 Evening, Harry. How are you? Speaker 1 I'm very well you've forgotten to introduce yourself. How rude. Speaker 2 I know. Well, I feel like they know who we are by now. But yeah, I'm Sophia Cashman. I'm also a consultant in Nottingham Centre of Excellence. Speaker 1 Centre of Excellence slightly less excellent without you, but you'll be back next year so I'll. Speaker 2 Be back very soon, Yeah, can't. Speaker 1 Wait, yes, so where are we were episode 3 of season 3 and we are focusing on a topic that we haven't talked about yet and that is bladder pain syndrome. And and we've got another fabulous guest, Sophia, that both both you and I have known for a long time. But but she's mainly your your bestie, isn't she? So I'll let you introduce her. Speaker 2 Yeah, thank you. So I'm very excited today because we've got my work wife, my bestie in the urology world, Felicity Reeves, who is consultant urologist in Cambridge. Hi, Felicity. Hello. Speaker 3 Thank you for having me. Speaker 2 Well, thank you very much for joining us, Felicity. You're part of the Recon team at Cambridge, so you have a specialist interest in things such as bladder pain syndrome. Yeah, which tends to vex a lot of our our trainees. Speaker 1 Can I just clear something up? So when when Fliss and I worked together, she was called Fliss. But I know she's kind of really important now. So do we call her Felicity? Speaker 2 Yeah, we do now. She's a consultant in Cambridge, of course. Sorry. Speaker 1 Sorry, Felicity. Speaker 2 You used to call me. Speaker 3 Reeves, Harry. Speaker 1 I did used to call you Reeves, but that that sounds rude so she. Speaker 2 Calls me Cashman. So no change there though. Yeah, right. So shall we jump straight in with the scenario? Yes. So Felicity, you are in clinic and you've been referred a four to six year old lady by her GP with a history of pelvic pain frequency and urgency. How would you tend to approach a patient like that in your Recon clinic? Speaker 3 So I would see this lady in clinic and I would ask for her to bring with her a three day bladder diary and also ideally some sort of questionnaire. And the best one that we would tend to use for bladder pain is the O'Leary Samp questionnaire. But there's also a pelvic pain and urgency and frequency questionnaire. And also it is useful to get them to do some kind of visual analogue pain score when they arrive. I would want her to have ideally a flow rate, but definitely a post void residual if they're unable to do that, and a urine dip. And then I would go into taking a full history. And the things that I'll be asking for in the history are about her low urinary tract symptoms. But the key things for thinking about bladder pain as a diagnosis of exclusion is to ask about previous surgery, particularly gynaecological surgery, particularly mesh, and also whether they've had any history of pelvic radiotherapy and any history of use of recreational ketamine, which has become quite significant over the last few years for us, and when. Speaker 2 You see a history like that? How do you kind of work out straight away that you're going down a pelvic pain route rather than a an overactive bladder route? Is there any easy tips and tricks or is it can you find it quite challenging? Speaker 3 No, I don't think there's anything easy. I think my first impression is that I don't go down a pelvic pain route. I do exactly as you say and go through all of the other history because sometimes people do have really severe overactivity that causes severe pelvic pain. We also see a lot of patients with endometriosis and so taking a full gynaecological history about periods and pain and discomfort associated with that that might be cyclical is also really important. Speaker 2 Great. And you mentioned doing a post void at least. Are there any other investigations you'd want straight away or examinations that are pertinent to it? Speaker 3 So urine dip is obviously really important, again for excluding other causes. And then on the clinical examination, it's important to do a full abdominal examination and then a vaginal and pelvic examination chaperoned with verbal consent. And really what you're looking for again, is have they got any particular tenderness in their pelvis? Have they got any other causes such as urethral diverticulum or any other pathology vaginally? And sometimes, so for example, for mesh patients, they may have a mesh erosion that you've uncovered and that's what's causing severe pelvic pain. So again, it's all managed in completely different ways. So I think I would say lesson 1 is do not assume pelvic pain is from bladder pain syndrome. You need to make sure it's nothing else first, and only at the end of all of your full history and investigations can you say that it's that. Speaker 1 Felicity, if if so, Felicity, sorry if they've had a couple of Utis in the past, but not recently. I mean, can can the two coexist? Can you have bladder pain syndrome and also have intermittent Utis? Or if you have Utis, does that kind of exclude a diagnosis of bladder pain syndrome? Speaker 3 So I think because we don't know enough about the etiology and there's also a lack of consensus on the diagnosis, it makes it really, really difficult to manage. And what we think happens is that over for some reason there's an injury to the bladder mucosa, there's inflammatory cells, there's disruption of the GAG layer of the bladder which leads to increased mast cells, T cell activation. And then what happens is that the epithelium becomes more permeable and then we think that things in the urine will then trigger sort of see fibres of the bladder, which then leads to pain. And so you do tend to see a lot of patients that seem to have had a history of recurrent urinary tract infections. And this is, you know, it's not proven. So they may coexist. It may be that somebody just has a really severe infection that is ongoing. And again, if that's not treated properly, you, you may not settle their pain. So I that's why it's so important to have urine cultures and results, a urine dip and make sure there isn't active infection and that it's been treated properly and these chronic infections have been treated fully again before you can say it's it's bladder pain. Speaker 1 So let's say we've seen we've, we've thoroughly examined this lady in clinic, we've seen her, we've taken her history, we've examined her and we can't find any obvious other cause for her pain. She's not had a previous mesh implanted. So what? What's your next step? Speaker 3 So the management should be a very holistic multi factorial approach once you finish your investigation. So if there is hematuria, if there is other factors that you, you wouldn't need to do a cystoscopy. The role of cystoscopy is is debatable. In some classifications like the National Institute for Diabetes and Kidney Disease, they say that you have to have a cystoscopy and they talk about the different findings on cystoscopy. But what we know is that some patients with bladder pain can have a normal cystoscopy. They may have glomerulations, they may have a honour's ulcer, which is now being referred to as a honour's lesion, not an ulcer. And I can explain why in a bit, but it it's hard to know. Again, the cystoscopy should be used as a way of excluding other pathologies. So a bladder tumor, mesh erosion, things like that. So then you need to think, but if you do think this is bladder pain, are you going to combine it with a Hydroid extension or are you just going to do the cystoscopy for diagnostic purposes? And again, you can justify either clinically. So if you're doing the cystoscopy to look for other reasons, but you've got to weigh that up with having a general anaesthetic and the risks associated with that. Some patients will have after the cystoscopy quite a flare up and significant worsening of their bladder pain and you have to warn them about that. And some patients don't want that if it's they're not going to change their overall management. So I think clinically thinking carefully about that. I personally would do an MRI scan of the pelvis in patients that have a history of mesh and in patients that have a history suggestive of endometriosis related to their cyclical pain or heavy periods and things like that. And then as I say, look at the bladder diary. Is there signs of overactivity, urgency, incontinence? In which case I would be considering doing urodynamics as well. Speaker 2 Just going back to the cystoscopy, so because the Eau as you said, it's, it's excluding other things, but they still have it as a strong recommendation to have Aga rigid cystoscopy. But we do know and there's the classification that you mentioned, but we also know that some people with normal bladders, we'll have glomerulations anyway if you distend their bladder. So I suppose there's some academia in this. But when you do your cystoscopy, you mentioned hydro distend. Can you talk through how you do that practically? Speaker 3 So the typical description is that it's under general anaesthetic, though it can be done under spinal. And the it's using a rigid sister scope and the fluid height should be between 80 and 100 centimetres above the pubic synthesis. And the bladder should be filled and held for two minutes. And some criteria talk about doing it up to twice. And again, I would just do it once. There are risks of doing that. There are, you know, noted risks of bladder perforations. And again, like we said, sometimes it's normal. It's interesting to think about kind of how it will help and the theory is that it reduced stretching the bladder, reduces anti proliferative factor and then suppresses cell growth and also increases heparin binding. And we know that heparin is within the GAG layer, which is sort of made-up of a combination of polysaccharides, hyaluronic acid, chondroitin sulphate and heparin sulphates. And that features in some of the management options later on. So that's the theory that we think of why the hydro dissension helps. And we also think that these patients that have frequency will end up with a smaller bladder capacity. So actually the hydro dissension in theory will stretch the bladder, allowing a bigger capacity. But the data and outcome shows it often helps for a couple of months, but it's not always a prolonged way of managing their their symptoms. Yeah. Speaker 2 And do you, would you routinely biopsy everyone or do you just biopsy if you see something of worry? Speaker 3 So again, there's no real consensus about diagnosing bladder pain syndrome. So the European Committee on Interstitial Cystitis will say you have to have a tissue diagnosis from the biopsy, but the biopsies can be normal. They can be inconclusive or they can show inflammation. And by saying that you've got a positive biopsy, it's saying that you're showing some fibrosis, inflammation within the biopsy. So, but your biopsy may be normal. So again, I don't routinely biopsy everybody. If I look in somebody's bladder and it is completely normal, I don't tend to biopsy. If it looks abnormal, I would biopsy. But again, using that along with cytology if you have access to that to make sure there's no underlying carcinoma in psych tube or a different pathology. Speaker 1 And can you, can you briefly tell us about the Hana's lesion then as you, as you say it should be called now? Speaker 3 So it was typically called a Hana's ulcer, but that was based on the. So it's a breach in the submucosa and the mucosa of the bladder which was typically described when the patient was having a hydro distension. But actually those you can see Hana's lesion without hydro distending the bladder. So it's a bit pedantic, but that that's how it's described now by some studies as a Hunter's lesion rather than an OSA, which you can have. Speaker 1 And do you still, do you still kind of go ahead and cauterize that with the Roly ball and that's meant to give some symptomatic relief? Is that true? Speaker 3 Yeah. So there there are some studies that show that if you have a Hunter's lesion, if it is either resected or folgerated with a Roly ball that it can relieve pain in up to 90% of patients. But there's a huge variation in the studies that will range from sort of 30% improvement up to 90%. So if I have a patient with and I've excluded everything else and they have what looks like bladder pain syndrome based on their clinical symptoms and their investigations that have shown exclusion of other causes. If I'm doing a hydro distension, I will consent them for folgeration of Hana's ulcer and a biopsy, which I would do all at the same time. And actually at the end of the procedure, as per Miss Suzanne Beers, who has trained me as well as Nikesh Serocharum, she tends to put an installation of lignokane and bicarbonate in the bladder at the end, which is what we use Parsons Cocktail at the end of these hydro distensions as they sometimes do wake up really uncomfortable. And that does seem to help. Again, there's no evidence base for that, but it does seem to help in the patients we do that for. Speaker 2 So hypothetically for our patients, say, you know, she's gone through everything, negative findings so far. So normally you're in dipstick, no concerning features found. And you do a cystoscopy and a hydro distension. And you know, sometimes you see a bit of pain response even when they're under anesthesia as you're filling your bladder. So say, say you see a pain response and she wakes up in worse pain temporarily and comes to see you in clinic and said, actually it made me better for a couple of weeks. But back to how I am. What would be the next stage in her management? Speaker 3 Well, we talk about trying to kind of the importance of phenotyping patients and there's this scale called U points, which looks at the different characteristics that can be linked with bladder pain. So that stands for EU is urinary. So that's their lower urinary tract symptoms and they can be managed as we would do with other patients with urgency frequency, with your typical kind of anticholinergics or beta 3 agonists and all conservative measures. So it's really important with these patients that you take an MDT approach in terms of dealing with things that may irritate their bladder such, So the other conservative measures such as cutting out bladder irritants, caffeine, fizzy drinks, acidic foods, they, it's useful for them to do a food diary And sometimes they'll come back and do a sort of food elimination diary that shows you actually, there's a really significant link with things like alcohol or particular foods that they can cut out. And actually it gets better. And we don't know for sure the Natural History of bladder pain syndrome, but there's definitely a group of patients. Sometimes it's described between 25 and 50% where their symptoms will resolve spontaneously or with conservative management. And I do say that to patients at the beginning, because some of them it it does, it does go away and you and you hope that that's your patient because it's obviously that's the easiest thing way to manage it. There's also so that in EU point. So urinary symptoms, the P is for psychological. So often they have associated depression, anxiety and stress. And again, that is really important to manage as well. And so not very many units to have access to a psychologist, but trying to make sure they've got support psychosocially with their GP is really important. And the O is organ specific. So people will sometimes have particular tenderness either around their urethra or in the pelvic floor or they may have prostatic tenderness in men. And again trying to highlight that to target treatment is important and and then I is for infection. So again like we said at the very beginning, excluding infection is really important and managing that and chronic infection and the N is neurological and systemic and that is because there are a lot of patients who will have pain beyond the pelvis. Typical things that are linked are fibromyalgia, irritable bowel syndrome. So again all of that needs managing with the constellation of other symptoms. And then the T is for tenderness which so if they have powerful tenderness or spasms, that's that's really important. And so then management should come back to trying to address all of those individual things. And that's and that's really important. And that's why management is complex. And again, I think for patients, it's because we don't understand enough about it all. It's quite hard trying to explain that you're going to be working through a bit of a process of trying different different treatments. Speaker 1 Do you have an MDT set up to see these patients? Speaker 3 We have a pelvic floor MDT to discuss them, but we don't have a pelvic, we don't have a joint clinic. And unfortunately actually we don't have and have a psychologist who's working only maybe sadly disaster for our patients. And I think it's a bit and yes, I, it is, they are, it is tricky to see these patients, tricky to see them quickly. But what I would say is the more people understand about it, the less intimidating it is. Because I think being able to have a discussion and manage expectations from the outset is one of the most important things. Because you know, if you say to them, have this done and come back, have this done, I think knowing that it's going to be a long term thing that there's a potential that, you know, 75% of the time they're going to have chronic symptoms forever. I know that's a depressing thought, but it does help them manage what's to come and it and I think explaining what some of the options are just so that they know there are a few options. But actually, I always say at the beginning, sometimes we will try all of these things and then it just comes back to chronic pain management and then we will be referring you to the chronic pain team if we can't get on top. Speaker 1 Of it, yeah. Speaker 3 And I think it gives them a then a kind of trajectory or a pathway where they know roughly what to expect from us, the urologists. And I think we hugely let down these patients by not having the good psychological support that they need. Speaker 1 And I think that's true for, you know, a lot of these chronic conditions. So go on and Felicity talk us through the the kind of the ladder of management strategies that you would employ in this situation. Speaker 3 So in my ideal wish list, Christmas wish list of things, I would have psychological input and cognitive behavioural therapy. A lot of patients will have sexual dysfunction. And I mentioned the questionnaire at the beginning, which was the O'Leary Sant, which sort of looks at storage symptoms and bother. But actually there's other ones like the McGill. Questionnaire that actually looks it's and the Apollo, there's an Apollo questionnaire that looks at sexual dysfunction and psychological impact. And so that that is all just as important as everything else. So if if you had a psychologist and you could get cognitive behavioural therapy, that is really important physiotherapy referral for pelvic floor relaxation. There is some data that shows that you can get an up to 60%, sixty, 2% improvement in symptoms just with that. And if you think about the patients that have the tenderness either in their prostate or pelvic floor, those patients in theory you think well, they should benefit the most. And there's said to be a 20% cure just from having pelvic floor relaxation. Speaker 2 Good, good. Pelvic physios are absolutely invaluable though, aren't they? Yeah, yeah. Speaker 3 Definitely. And I think, but I think The thing is you need to make sure you don't refer them. For some people refer them to pelvic floor physio thinking they want you to do exercises and tighten everything up even more. But actually you're saying teach them how to concentrate on and relaxing and and helping relieve that sort of tension. So that's really important. The dietary modification we talked about and again reported up to 86% improvement in symptoms just by doing that stress management and then it we come to sort of pain relief. So there is and there is some data about acupuncture 10s PTNS, but the data is limited 26% improvements in some of the studies. But you know if that does work for you that you know it's very low risk. So again it's it's definitely important to talk about and then add oral medications. So we've got neuropathic analgesics like amitriptyline is a typical one to start patients on. There's a couple of randomised control trials that show benefit with using that. We normally start at 10 milligrams and then gradually titrate up to the pain up to sort of 50 milligrams. Other options for things like pre Gabolin and when we talked about the GAG layer and histamine being within that, we think there's a when you look at some biopsies there's a sort of mast cell activation and so antihistamines can sometimes help. So again, there's some a randomized trial looking at use of semetadine that shows improvement benefit over placebo for these patients and also. Speaker 1 I think that that used to be very common when when I was a registrar, but I haven't seen so much of it around now. Is it fallen out of favour, Semetadine? Speaker 3 Well, we tend to use hydroxyzine and to be honest, that's only because that's what I was taught to use as a registrar when I was, I've been training. So I tend to use hydroxyzine 25 milligrams at night. And again that can be titrated up. I haven't seen, I don't tend to use metadene, but it's mainly because of that's how I've been sort of taught. And you will see some of these patients have a really strong history of atopy. And I think it's interesting because some of them will say, actually when I took antihistamines for my, you know, allergies or whatever, I did notice my bladder was better. And so some people just doing that is enough. Then again, that's what you hope you're that person. And when we talk about the phenotyping back to the beginning, you know, people say what's the point in doing that? And I think it is because it sometimes helps you guide the treatment. There's no evidence to say that, you know, somebody with one particular phenotype is going to benefit from one particular treatment. However, I think it does. It does help, and it helps you track the response to treatment. Speaker 2 And I think hydroxyzine is the one that you there was an MHRA alert years ago, wasn't there about prolonged QTC. So that's just something to be cautious with. Speaker 3 Yes, yes, yes. Speaker 1 What's the kind of response rate to amitriptyline and gabapentin type drugs? Speaker 3 I mean I I don't have the exact figures from the randomised trials but will again many some patients it will just help. Sometimes they say it helps me sleep. A lot of them will get side effects on it. So they'll say I started taking it and I stopped. So I would say in the patients that I've seen, I'd say about 50% of them roughly will carry on with it. But again, that's anecdotal. It's, it's a kind of, it's a kind of toolbox for trying to treat. And I think we just worked through this process of picking the least risky thing to do 1st and just seeing the response. It is important though that if they do tolerate it, it is titrated up. These medication things are titrated up to their pain and their response. Because some people take it for a bit and think, oh, it's not doing anything. But I find a lot of it is is the side effects profile of a lot of drugs. So then other medication we have access to is sodium Pentosan polysulfate, otherwise known as Elmiron, and that is taken three times a day and we use it for up to six, we use it up to six months so that we have to warn patients about this risk of pigmented, pigmented maculopathy. So yeah, I, I think in the UK it hasn't particularly been reported, but in America, where some patients are on it for sort of 10 years, it, it seems to have been a problem. But the recommendation is that they then have an eye examination, I say to have one done before they start. It is 6 months and then at five years. And again, I, some patients don't tolerate, they say it makes them feel sick. Other people tolerate it really well and it makes a huge difference. And the idea is it's trying to reline the bladder, replenish the GAG layer like the bladder installations do. And patients sometimes say, well, I was on it for six months and it was amazing. And now I've stopped it and I feel like my symptoms have come back. And that's really difficult because technically we're supposed to use it for six months and that should be enough. But then some of the, like I say, some patients don't want to have bladder installations and other patients don't like to take medication. So I just think it's it's great that there's a few different options for depending on what patient specific requirements are. Speaker 1 And then moving on to the bladder installations, I mean that's in my observation anyway, something that seems to happen quite a lot. And again, it's all about the replenishment of the the gag layer. Is it? Speaker 3 Yes, exactly that. You've got to, I think one of the difficult things with the patients with frequency and urgency is that they've got to be able to hold the installations in their bladder for sort of at least 15 minutes to allow it to treat. And they will have an induction course, which is usually weekly, and then a maintenance course depending on what there are. And the options we've got are using hyaluronic acid or chondroitin sulfate or we have access to Parsons cocktail, which is heparin, lignicane and bicarbonate, which not all units do, but it can be made-up. So it is possible to, to do that. And the, the typical thing that was described was dimethyl sulfoxide DMSA, which we we don't actually have access to. And I don't know why, but the randomized trials for that showed about a 53% improvement in symptoms. But again, and sometimes these aren't maintained over time. And I think that's the challenge. You sort of give the installations. And we have a lot of patients that will say I'm fine while I'm on the installations. But when you try and draw it out and stop it, they sort of say I still need it once every six months or you know, so that that can be challenging, I think. Speaker 1 And he just reminded me about DMSO, which has got a funny side effect. The urology trivia. It makes you smell of garlic. Speaker 3 Oh, oh, look out. Speaker 1 Really bizarre. Speaker 3 Is that going to be in the MCQ fair? Speaker 1 It should be. If I wrote the exam, it would be. So we've done tablets, we've done bladder installations. There are a few unfortunate patients who aren't there who really, you know, engage with everything but just don't respond to it. So we're kind of reaching the limits of medical treatment, I guess. So we are we then thinking about possible surgical treatment. Speaker 3 Yeah. So there's still the so in the. So once we get on to these after these sort of installations and things generally we would tend to make sure these patients then discussed at a pelvic floor MDT, you know you can we talked about resecting a Hana's ulcer. And the other option is there are some studies looking at use of Botox, so Botox A and there's sort of three randomised trials that I've seen, but they combine the Botox with the hydro dissension. So then it's difficult to know is it the Botox, is it the hydro dissension? It talks about a 63% success rate with that as treatment. So Botox and hydro dissension. But over 2 years, this kind of drops off to 30% improving symptoms. So but we know that Botox will wear off anyway. So we do have some patients who and now we can use Botox for over active bladder symptoms after following the future trial that we know we don't need to do, we don't have to do urodynamics. So we can offer Botox to these patients based on their lower urinary tract symptoms. Again, going back to the phenotyping, if they've got severe overactive bladder symptoms that that may well be something that really helps them. There's discussion about giving the injections into the trigone, which is, you know, the opposite of what we, we usually try and avoid the trigone and the Uos don't mean when we give Botox injections. But again, I don't, I don't know why that would help. But yeah, so but some people will inject the trigone on purpose. And there's also some reports of people using sacral nerve stimulation with up to a 72% success, but around 1/3 of the devices were then explanted because they stopped working. So it's hard to know actually are is this a group of patients that have been under diagnosed with overactive with the chooser overactivity that actually have responded to the SNS or does it actually help for bladder pain? And I have had a patient recently with really severe recurrent Utis, bladder pain frequency was up 20 times at night and she did have to choose her over activity on her urodynamics. Her infections were impossible to manage. We tried all of this and she has, she has had SNS done for her bladder over activity because in the we don't SNS is not licensed for bladder pain in the UK. So we, but it is we are able to use it for avoiding dysfunction and this group of patients do have voiding dysfunction. But I think it's really important that if you're using the sacral nerve stimulation for avoiding dysfunction as part of a pelvic floor MDT, that you're doing it for the overactivity and you warn the patients that it's not necessarily going to help with the pain. My 1 N equals one patient. She had a miraculous response, which I really hope continues because I honestly thought it was. It was getting really hard to manage. Speaker 2 There are those people that really struggle to differentiate between this sensation of horrible urge and pain, and it's really difficult to be inside someone else's head and understand what what they're feeling, isn't it? So sometimes I wonder if the people that are saying it's so painful until I go, actually that is how their brain interprets severe urgency. Speaker 3 I mean, and that's the typical thing of bladder pain is that patients. Speaker 2 Feel. Speaker 3 Better when they've emptied their bladder, they say When my urines dilute it feels better, whereas with urge it's yeah, it's very hard to unpick the symptoms, isn't it? The bladder is an unreliable witness. Speaker 1 You know who said that first? Do you know it was it was one of one of our very illustrious predecessors in Nottingham, Patrick Bates. The the end of the line presumably is is some kind of definitive major surgical procedure, but I presume you you reserve that for the the most stubborn cases that just won't respond to anything else. Speaker 3 Yes, I think, yeah. And as I say, I do, I do see some patients who've really struggled for years and then I do an MRI of their pelvis and they've got really severe endometriosis. And I just think that's, that's a, that's terrible. Speaker 1 It's a real shame, isn't it? Speaker 3 And then you they have treatment for it and their pain is better and you think, you know, we've spent all this time doing all of these different treatments and actually that that's been the problem. So I don't think we're very good at sort of getting a very excellent gynecological. Well, I'm not very good at getting a really good gynecological history. And I think it is really important. And that's why, you know, the MDTS are good for for that. And I know not everyone has access to Mris, as, you know, as easily as some hospitals, but it it is important. And you don't pick it up on pelvic ultrasounds and things. So. Yeah. So you just want to talk about surgery, Harry, that's all, isn't it? Yeah. So surgical options. Surgical options are the kind of, you know, cystectomy or supratrigonal cystectomy. People talk about bladder substitution or diversion with an ileal conduit. And some of the papers show that if you do do a cystectomy, 78% of patients with bladder pain will be pain free. If you look at the number of patients that will have a honours Hannah's lesion, it's only makes up about 10% of the total patients with bladder pain. Oh well, from what we know about SO. Speaker 1 It's a really small minority. Speaker 3 Yeah, that's what, well, that's what the studies show at present. And So what we don't know is which are the which are the group of patients that will go on to having severe enough symptoms to need a need a cystectomy and these sort of more invasive surgical options. Speaker 2 But it is interesting, isn't it, that one in five who've had a cystectomy still have pain afterwards. Yes. You know, it suggests that actually sometimes we're not, we're not necessarily targeting the right thing and. Speaker 1 Where do they get the pain? Is it still in the in the pelvis or does it shift to being in the conduit? Speaker 3 I I think most of them just still have most of them. I think the difficulty is these patients that have systemic issues with fibromyalgia, chronic pelvic pain, it, it's just really hard and it's always, I don't know when I see, if I see a patient come back and they say, do you know, I've had a couple that still say my pain completely went when you, you know, And then because there is the option of leaving the bladder behind and doing just a diversion conduit and leaving the bladder and there's a report of sort of 24% then getting Pyocystis and needing a delayed cysteclone. So we should we always have that conversation with them. You see some of these bladders, they look terrible, don't they? They're friable, they bleed, you know, they look painful. It's hard taking somebody for, you know, major surgery if and leaving that behind because you think, well, it's going to be chronically inflamed still what you know, how's that going to settle? They are going to end up with a load of pus in their bladder. And there is the option of doing a sense procedure, which I've only ever seen once when I was doing my fellowship at UCL, where basically you open the urethra into the vagina and make a big fistula that said leaks, leaks everything out. But it's pretty not very nice. I would say these patients, once they've been through an MDT, the other thing that we insist on, which is very difficult to get in times, is that they have a really mental health review to make sure that that there's nothing else that we've missed and that the the patients are going to be able to manage. When we did have an amazing psychologist. So it's been hours with the patient and give them all these strategies and you know, sometimes they do end up still needing a cystectomy, but we should have exhausted all of that before and made sure that they're really supported. The other thing that we're having I, well, I have a real challenge whether these patients with fictitious disorder and pain that we're trying to set up clinics with psychiatry, because that's like another whole thing that's very, very, very complicated to manage. And, and I really struggle with those patients as well. And again, that should that's always at the end of my thoughts. But these patients, when they get to the point of needing a cystectomy, I think having a really detailed mental health review and assessment so that we've documented that we've checked, there's nothing else that we need to be doing for them before they enter into major surgery is is really important. Speaker 1 I, I think that's a really good point. And I mean, my really excellent friend Jonathan Glass at guys used to run a, a Euro psych psych psychiatric service with a, with a psychiatrist. And, you know, I think he predominantly saw patients with testicular pain, but that's very similar phenomenon, isn't it? And, and he said that it was quite extraordinary the complexity of psychological issues that these patients had. And his belief is that you, you know, we as surgeons and physical doctors can't really too much without addressing the mental health side. And I think that's that's probably true for your patients here, Felicity, isn't it? Yeah. Speaker 3 It should be done right from the very beginning, but we're not. We don't have the resources. It's not high on the priority list. It's poorly researched, isn't it, this whole area? And definitely, I feel like we do let people down as a result. But I think like you're doing now is like sharing this, spreading awareness, trying to to improve people's understanding of the pathology and what the options are, is is good, isn't it? Speaker 1 I mean, absolutely. I mean, look, you've been doing this for for a long time now, Felicity, what's your general feeling? I mean, when the patient first comes to you, I mean, just to kind of draw the whole whole kind of topic to, to close, really. I mean, the things I've picked up are #1A really thorough assessment of other potential causes is absolutely key before you can call it bladder pain syndrome. And then secondly, it's really about that building that relationship and setting expectations for your patients. But this is, I guess, a fairly kind of long road, and you see these patients over a decent period. Is that fair? Speaker 3 Yeah. I mean people describe them as sort of a heart sync patient, don't they? But I think what I find really satisfying is when you actually pick up another pathology or they do respond to simple treatments and some of them really do, and that is that is still a really satisfying way. Very. Speaker 1 Gratifying, I'd imagine. Speaker 3 Yeah, and being able to avoid them ending up needing to have major surgery it it is, is really satisfying as well. So I think a lot of the anxiety about managing these patients is just not being quite sure how where to start, how to tackle it. And with the way the referrals are done and waiting lists, this is never a high priority. And I think if you have access to, you know, getting the once, if once you've received your referral, getting the patient to do their bladder Diaries, pain scores and, and get some kind of imaging, you know, I, I think it's really good if they have an MRI before I see them in clinic. So if they come in with deep pelvic endometriosis, I send them first to the endometriosis team. We get that managed first. And if they still come back with bladder symptoms after that's been well managed, at least you know that. And a lot of these patients don't feel believed, they don't trust. They feel like they've gone back and forth to many. Different doctors and you know, they, they, that trust is kind of slightly broken when you start seeing them. So I think knowing that you're, you're listening and you've been thorough and you've done all the other examinations and imaging to exclude other things. They, it gives them, you know, some reassurance that I think is really important. They know the pain isn't, you know, something worrying and, and sometimes that really helps as well with them dealing with it. Speaker 1 Great. Sophia, have you got, have you got any slightly more informed questions than my amateurish questions? Speaker 2 No, I don't think so. I think we've been through almost everything. We can possibly do some bladder pain. And as you said, it's a really challenging thing to manage. But it's a group of people that need some TLC and thorough care, don't they? Yeah, yeah. Well, thank you very much, Felicity for giving up your what we on Tuesday night. Speaker 1 Tuesday evening. Speaker 2 Tuesday, Yeah, this is. Speaker 3 Very. Speaker 2 Welcome, really really appreciate it and I think it's 1 the trainees really do struggle with so I'm sure this will be invaluable for them. Speaker 1 As ever, send your questions to us at Urology Resource All one word Urology [email protected]. We will be back very soon with another episode in Season 3. So until then, lovely to lovely to speak to you all and we'll see you again soon. Cheers. Speaker 3 Thank you.