Welcome to this episode of How We Really Feel. This episode is for anyone with a bladder or a pelvis. I was so incredibly fortunate to interview two highly specialized experts in their fields of urology, bladder health, and pelvic pain, Julie Bond and Dr. Elise Day. Julie Bond is an incredible pelvic health physiotherapist, having worked extensively in the NHS, in education, and founding the Pelvic Pain Network. Julie is currently completing her PhD, which explores visceral perception in persistent pelvic pain.  and frequently collaborating with the Noi Pain Group in Australia. Dr Elise Day is the former director of neuro-urology at Harvard and current director of multidisciplinary pelvic health at the Albany Medical Center in New York. Elise is the urologist you would wish to see if experiencing any kind of bladder issues, and she continues to publish research on pelvic pain and voiding dysfunction. In this episode, we discuss everything from how do we know when we need to wee,  and the surprising things that can make it more or less likely, including the fascinating science of the bladder-brain connection. We also talk about the role the nervous system plays in bladder and pelvic sensations, and how and why, if you have bowel symptoms, jaw pain, and pain elsewhere, you might also end up having issues with pelvic sensations. We do use some technical terms.  Some key things you might hear us talk about include the central nervous system. This is the body's main processing center made up of our brain and our spinal cord. The autonomic nervous system. This is a sub-branch of the central nervous system that controls involuntary bodily functions like breathing, bowel and bladder movements and more. The sympathetic nervous system and the parasympathetic nervous system, which are two sub-branches of this autonomic nervous system, and they innovate the bladder and also play a central role in activating and regulating the stress response.  We'll also use terminology to describe a range of different urological procedures and diagnostic procedures, including cystoscopies, urodynamic testing, catheterizing, and particular medication. You can look at the show notes to get more information on these. Terms like hypertonic pelvic floor and high pelvic tone refers to muscles in the pelvic floor being tight and unable to relax. Throughout this episode, you'll see just how complex the pelvic region is.  speaker-0 (02:10.945) and why an integrated, multidisciplinary approach that includes psychology is essential when you're experiencing ongoing bladder issues. My hope is that you will also feel comforted at just how many options there are for tackling these issues and how much exceptional professionals like Dr. Elise Day and Julie Bond are advancing the field. I hope you enjoy this conversation as much as I did. This conversation connects closely with the work I'm doing with Confidant Continence Care and their Me Plus programme.  which supports people using intermittent catheters with both practical guidance and emotional wellbeing resources. If this is of interest to you and you'd like to find out more, visit Convetech.com and access the Continence Care Me Plus resources. Links can be found in the episode description.  speaker-2 (02:57.474) We're real.  speaker-0 (02:58.454) We're real, we're formal. So yes, thank you, Gillie and Elise for being here. I'm so excited for this episode. I'm going to just start off by asking you guys to introduce yourselves a little bit about your backgrounds and what you're doing currently, what you're working on currently. And then we'll get into this episode, which is all around the bladder brain connection, pelvic and brain connections, just understanding all of these things in a lot more detail. So I'm going to hand to you first, Elise.  speaker-2 (03:27.746) Great. So my name is Elise Dey. I'm a urologist with fellowship training in urogynecology and neurourology. I'm a professor of urology, OBGYN and neurology, Albany Medical Center in Albany, New York, USA. And I also have worked for a very long time with the International Continent Society. And we have been working very hard in pelvic pain recently, and obviously on bladder function over the  years. Also, I have written a book on pelvic pain and a number of guidelines on pelvic pain for the American Urological Association. My passion is really in multidisciplinary approaches to pelvic health. There's very strong evidence about overlap among the different organ systems, bladder, bowel, pelvic floor muscles, sexual function. And there's  there's a great deal of input from the central nervous system and peripheral nervous system into the function. And we see a lot of not only neurological conditions such as multiple sclerosis, but a lot of dysfunction that's more autonomic dysfunction and small fiber neuropathy impacting the functions across the pelvis.  speaker-0 (04:51.34) Yeah, thank you. And I remember at least when I first came across that discipline of your own neurology and I just thought how fantastic because until that point it felt like the bladder was this very specific area of the body that, you know, seems so interconnected and yet was just looked at as a single singular thing when in actual fact, you know, so much of what is happening neurologically obviously has a big impact on our, on our bladder function. So I'd love to,  to explore that more with you as the episode goes on and of course with Julie, but perhaps just to explain what your own neurology is for people that might not have even heard of that area before. Neuro-urology. Neuro-urology, yeah.  speaker-1 (05:29.069) for.  speaker-2 (05:29.902) So it is traditionally thought to be the management of bladder conditions in the setting of a spinal cord injury, a stroke, multiple sclerosis, transverse myelitis, Guillain-Barré. Those are all conditions that are impacting the spinal cord and central nervous system. so you can, depending on the level of impact,  On the nervous system, you will see different manifestations in the bladder, either disinhibition and overactivity of the bladder, or if it's lower down in the spinal cord or the sacral nerves, then you'll see a bladder that doesn't contract. But what I also see in my avoiding dysfunction clinic and my pelvic pain patients is patients who have actually a normal neurological exam and a normal EMG.  ruling out a large fiber neuropathy, nothing's going on in the central nervous system, but we're seeing dysfunction of the peripheral nerves. And there's a relationship between central sensitization of pain in the peripheral nerves with communication from the brain to the peripheral nerves and also isolated small fiber neuropathies. These can be caused by, so that's just the autonomic nerves, like the nerves to the  bowel and bladder and sexual function, but also in small fiber neuropathy. So you can see heartburn, dry eyes, ringing in the ears, deafness, painful tingling in the feet. And diabetes can cause a small fiber neuropathy, B12, celiac disease, anything that sort of creates a noxious impact on the nerves. And there are other causes for  systemic neurological issues as well, are a little more obtuse, such as MTHFR mutation and in some cases of MTHFR mutation when it impacts folate and B12, which are important for nerve health.  speaker-0 (07:40.472) Thank you. I'm so excited to dive into all of this with you. Let's bring in Jilly. Can you introduce yourself a little and what you're working on at the moment?  speaker-1 (07:48.766) Hello, I'm Gillie Bond. I'm a pelvic health physio, an advanced practice pelvic health physio, which means I treat people with any kind of pelvic health needs. I have been a postgraduate educator for about 10 years, working in pelvic pain space and at the same period of time doing research around pelvic pain and trying to improve how we treat pelvic pain by improving what we call phenotypes. So thinking about  classifications for patients and how we can apply them in ways that are realistic and work with the health systems that we've got. And at the same time, trying to disseminate education to help people understand their pain better. And over this time, I've got more and more into research and I'm now doing a PhD looking at what we call body perception distortion. So when it doesn't feel right. So we know that people get things like  phantom limb syndrome when people have an amputation or in complex regional pain syndrome, which is something that happens sometimes to people in their hands and feet when they get really bad pain and we don't know where it comes from. They can have all these kind of funny sensations that things feel bigger or they can't connect to that area. They have a feeling of disconnection. We have been trying to baseline this as a theory in pelvic pain so that we can form better treatments for it because  there are treatments out there for when this happens in other types of pain. So we know in low back pain, was a really good study last year or the year before, the BAG Resolve trial in Australia that showed that if you implement some sensorimator training, so you get people to feel more acutely where they are and be more aware of it, alongside rehabilitation from chronic pain, that their pain gets more better or faster, is the nice term for it. So what we want to do is see if we can implement that in pelvic pain.  and that's what we've kind of been having a look at.  speaker-0 (09:47.15) I know that you've recently been discovering all sorts of interesting things, so we'll get into that shortly. But yeah, thank you both for being here and it's so great to have such in-depth knowledge from kind of different professionals like a pelvic physio and the urologist. It's so rare as well that patients get that opportunity to have this multidisciplinary kind of input. So I'm very excited for this episode. I wanted to start though really broad for people that might not necessarily have pelvic issues or bladder issues.  And just, you know, helping people to understand how is it that we know when to go to the toilet? And then I'm going to ask you a bit about some common things that lots of us experience, whether or not we've got pelvic or bladder issues.  speaker-2 (10:31.49) Dilly, would you like to answer that or?  speaker-1 (10:33.153) I'm happy for you to take that one.  speaker-2 (10:36.142) So as the bladder fills, the bladder has stretch receptors. as they stretch, the tightness of the outlet increases and your brain is really not aware that your bladder is filling until a certain point. And then at a certain point, you start getting feedback up to the brain and the brain realizes the bladder is full. And then the brain will inhibit  the urge to void until it's a socially appropriate time. And once the brain decides it's a socially appropriate time, it gives messages down the spinal cord. And at that point, the parasympathetic nervous system is allowed to contract the bladder and the bladder is allowed to empty. So the external urethral sphincter is a mechanism that we can use to impact that feedback pathway.  And that's why when physiotherapists have you squeeze the external sphincter to inhibit the urge, it's successful because it's impacting that whole pathway. So anyone who's listening to this podcast who may or may not have bladder issues, if you're in a traffic jam and your bladder's full and you're really getting desperate, if you've given nice tight squeeze to the sphincter muscle like a Kegel, it should give you a little more time.  speaker-1 (12:01.016) time. Yeah.  speaker-0 (12:01.966) Absolutely. And I guess this is a really nice kind of starting point to understand some of these common things that people experience. So one of the things that I often talk about with my clients is this key in the door phenomena or key in the lock phenomena where, you know, you do have the urge, but as soon as you get to your house and you've got your key in the lock or you're close to the toilet and your brain's then getting that signal of it's a socially appropriate time, you can now go to the toilet or thereabouts.  then the urge gets so overwhelming and you feel often people, I mean, I work with a of people with bladder issues, but often people feel like at that point they might just have an accident. feels like it's very hard to override that signal. So I guess that explains it, right? That the brain is sensed, we're close to home, we're getting very ready, we can relax. Does that then mean that people are more likely to have an accident, you know, when they put the key in the lock?  Or is it just it feels like that because the brain's given the cues?  speaker-2 (13:01.568) it's real. But, Jilly, I'm sure you have all the strategies to manage that moment.  speaker-1 (13:06.72) Yeah, I mean, the more we're learning about it, it's a bit more complicated. if we take the simple kind of straightforward, we're talking what somebody might go to their GP and say this, and then they'd be told they've got an overactive bladder, right, which we could go further into, but really simple things that will help. So as Elise was saying, that we've got this really quick reflex mechanism where we can use our external urethral sphincter, a bit of action that bounces along the nerves.  and inhibits or calms down some of the activity. So if you get that key indoor urgency, as we call it, which is a real behavioral strategy that the brain has learned. And it's partly because you're a little bit in general ramped up in that area. So everything's a little bit heightened potentially for lots of different reasons. Using a calming breath and then pelvic floor back passage up and forward as if to stop from breaking wind and holding it just for one second, a little bit.  calming down if you can, if not sitting down on something like the garden wall if you're able to, or the step if you need to, so you can get some perineal pressure that's socially appropriate. And the problem with this is a lot of this is not socially appropriate. The next one we'd use, if you can't do that, then can you give yourself some pressure to your perineum, which can help everything to relax and calm. But again, that's not okay if you live in a flat or your door is straight onto the street.  And the last one would be rising up and down your toes because it activates the same branch of nerves vaguely that covers the bladder. And it also activates the pelvic floor to kind of control your pelvis as you're doing that movement. So some people find that actually they can't do anything else, but they can rise up and down their toes and breathe gently. And that will get them through the front door.  speaker-2 (14:52.046) I've also heard walk don't run.  speaker-1 (14:55.021) Yeah, yeah.  speaker-0 (14:57.022) And yeah, tell me why is that? Why would you walk rather than run?  speaker-1 (15:01.272) So there's a bit of a sticky one here. So there's a whole field around bladder urgency that it's this behavioral change. that possibly as women go through menopause and we become a little bit more triggered, so our bladder becomes a bit more irritable. It's what some people would say, or you're a bit more aware of it because of reducing estrogen, but sometimes because of lots of other reasons. We can try and stop that behavioral.  So the link is often the front door is where, I'm going to be in soon, I'll be able to get to my toilet. But it's also somewhere where we have just in case wheeze before we go out. So we're often thinking about, even subconsciously about going to the toilet when we're getting through that front door. And most of the time, it's totally appropriate to try and hold it off and try and calmly walk and hold it bit longer. But if you've got some urgency, it needs to be investigated. You need to see a doctor.  and then you need to go, you know, give them a bladder diary so that we can have a look at whether that is true, detrudes or overactivity, or if it's just a bit of sensory urgency. And if sensory urgency is the case, then we don't want to be doing bladder holding retention kind of strategies, because that will just keep making it worse. So it's about working out what is the cause of this urgency.  speaker-2 (16:18.318) Sula, if you think about the fact that sexual arousal can be entirely cognitively based with no touch, it really makes sense. if somebody gets into, you know, when you're driving and somebody stops short in front of you and you slam on the brakes, your whole body feels that you feel in your gut. I mean, that mind-body connection is so hardwired that you can appreciate how it also applies to the bladder.  speaker-0 (16:45.708) Absolutely, absolutely. And I'd love to actually ask you a bit about that, even the context of like, this is a socially appropriate place for me to go. And therefore that urge might increase, but I know Julie, you're saying there's also a bit more complexity to that. But can it be then that our bladder can start learning habits? So I was hearing an interesting conversation about peeing in the shower and whether it's appropriate or not is a different question.  Some people are saying as soon as they get into the shower, they straight away get that urge, but they've never inhibited themselves from weaning in the shower. even if they've just been to the toilet, they might then start going and this can that, yeah. Does that explain some of that? Is that a thing that happens with the bladder?  speaker-1 (17:32.824) So it's one of the strategies. we also work with people that can't go to the toilet, which is also as distressing and they have hesitation or they have a shy bladder or they really struggle to go for lots of different reasons. And we'll use heat and hot water on the sacrum on your lower back and your pelvis as a way of stimulating going to the toilet. And often that change in sensation and that sensory difference can be enough to allow someone to relax and be able to have a wee.  So it's quite a normal mechanism and we would actually use that as a strategy. I remember this being kind of a conversation a while ago that you should never pee in the shower. We've got to have perfect bladder habits. You know, all of these things that go through the magazines. But I'm pretty aware of any research that suggested that people have raging bladder issues because they were in the shower. I think it's pretty normal.  speaker-2 (18:25.294) I agree. My practice is in a city, but there's a lot of countryside around the city. So I have a lot of patients who live on 20 acres or more. And so when I'm performing neurodynamic testing and I'm asking them to give me feedback when I'm filling their bladder, how do you feel? Would you go if you were in the comfort of your own home? If you were driving, would you be looking for a rest area?  If you were driving, would you be urinating in the woods? That's just not a relevant question because for some of my patients, it's so normal to go in the woods if they're out for a jog or something. And for some of my patients, that would be very socially inappropriate in their mind. So the question I've started using is would you leave a wedding or a funeral to avoid? Because that's more consistent.  speaker-0 (19:10.494) Yeah, that's really interesting the way you ask those questions. And also I'd love to talk a little bit about Eurodynamics with you in a moment. One last question kind of on some of these broader bladder experiences that people have. Gilly, you were saying about using the sensory cues to help people relax to go perhaps. Another thing that I think I experience anyway, or do experience and have drawn an association between, and I know a lot of people I've spoke to about this also do is,  It feels like there's an increase in urgency as it gets colder. Is there anything in that? Or is that just one of these random associations we've made for different reasons?  speaker-1 (19:49.894) that there is actually. There is evidence showing heightened bladder activity and heightened bladder sensitivity to cold, but it's for lots of different reasons. We know that there's up to about a third of people have slightly more certain types of receptors in their blood lining, so there are a proportion of the population who are slightly more likely to be urgent and feel that they need to go to the toilet than others, which is normal.  And then we know there are situations in which people would be more aware of their bladder. So if you've had a UTI recently, if you've had more than three UTIs in a year, if you've had two or three bouts of thrush and other situations to do with kind of if you've got painful periods, if you've got endometriosis or other kind of pelvic pain, even if it's only happening monthly with your cycles, you're slightly more heightened. And so we do have some good data out of Fab, the girl lab, which my favorite people in  America doing some great work with girls with painful periods. periods are more than technically a four out of 10, which I don't know anyone who has a period that is less than a four out of 10. I think we've all got dysmenorrhea.  speaker-0 (21:04.046) This is a really nice point actually to start looking at the kind of peripheral processes that go on. But before we do perhaps, Elise, could you talk a little bit about why people might start experiencing bladder issues and pelvic issues kind of surrounding the bladder? was just starting to talk about some of these like chronic UTIs, thrush, even the overlap, which I'm sure will be surprising to some people of like painful periods and then.  increased urgency or bladder sensation.  speaker-2 (21:36.118) I think part of it is direct crosstalk. There's an author, Malinkaya, who years ago did a beautiful study in rats. They injected dye and followed the pelvic nerves. They found a 20 % crosstalk between the pelvic floor muscles and the bowel. That also applies to the other organs in the pelvis.  The way I explain it to my patients when I talk about high tone pelvic floor muscles and pelvic floor tension myalgia is that if you have a stomach ache, you don't really know if it's your, know, your fundum, your ilium, your stomach, your appendix, right? Because the innervation is so vague. If you have a, you know, if you stick yourself with a pin on the arm, you know exactly where it happened because somatic innervation is so precise in terms of localization.  So likewise down in the pelvis, wherever you're having your pain is just much more vague. I clearly some people know their pain is bladder or bowel or anus or uterus. When you're getting a pass smear, you know where that pain is, right? But some of the pain is more difficult to localize. And so when people have high tone pelvic floor muscles and pain in the pelvic floor muscles after, for example, a UTI where they gripped in pain for a week,  and then the UTI is gone, but that pelvic floor disorder is now present, they may still feel like they have a UTI after the UTI is gone. They may still have urinary urgency and frequency. So, you the perfect moment to catch that is at that moment and you send that person to your colleagues for pelvic floor physical therapy, down training, and it improves. So there's the tension in the pelvic floor muscles that's giving you discomfort.  but there's also the crosstalk where your brain is interpreting it as bladder. In my mind, there's sort of two mechanisms now. And when this goes on for so long, then the other organs can become recruited because of that crosstalk. So earlier treatment, the better in that situation.  speaker-0 (23:52.482) Because that can be quite hard for an individual to believe as well, can't it? know, when you've had a urinary tract infection and it feels so specific and there's the burning and the stinging and you haven't been able to go to the toilet or the urgency and these experiences vary, then when you are no longer getting back positive tests and you've been given courses of antibiotics, but the sensation feels...  pretty much the same as what you had when you had a UTI. It can be really hard for people to get their head around, to know actually the mechanism of this pain is slightly different now because of what you've just explained Elise, like the pelvic floor and the recruitment of these different nerves in the area are kind of sustaining it in that way.  speaker-2 (24:36.322) Yes, and there are other mimics, vulvar exposures. So maybe people who are using wipes to cleanse themselves, can irritate the urethral meatus. I see a lot of patients with high tone bladder neck, so like bladder neck obstruction. And this can be a localized phenomenon or it can have to do with a systemic nerve issue like the small fiber neuropathy. So when people have  a tight bladder neck and bladder neck dysfunction, it can lead to very precise and specific urethral pain and the feeling that you have a urinary tract infection. It can be painful to urinate because of the turbulence. And those folks might also experience urinary hesitancy with that delayed urination.  speaker-0 (25:25.326) That's so interesting. Sorry, yeah, go on Julie.  speaker-1 (25:27.63) I was just thinking of ways to explain it to patients in that. So it's, it's obvious when we start thinking about the bowel has an effect on the bladder. So it's easy to think about things like if you're really constipated, and it's so full inside, it's hard to have a wee and it can, but it can also make you feel like you're more full than you should be because that that bowel is pressing on the bladder because everything's quite close together and squishy. But in the same way,  Because all of the nerves are shared and we've got a common neurology, it's a bit like a web is how I describe it to patients. It's not when we think about nerves as non academic kind of non medical people, you might think of strings, but in the bladder, it's very much like a web around lots of things. And if you have a really bad sickness bug and you've been sick, but you've also had diarrhea, you probably will get some urgency as well. Your bladder will feel a bit touchy. Everything feels a bit touchy.  But there's nothing wrong with your bladder. It's just that actually all of the nerves have registered a threat to the system and that threat has registered as, it means that they are, that the brain pays more attention to them and that the threshold for them to kind of fire and be active is reduced. So you get more inflammation from the bladder and the bowel than you would normally. So you get more sensation from them and that's heightened. And that's what persists. Cause as humans, we're really, really good at learning and adapting.  might not feel like it sometimes, but we are. And so if we get poorly, we learn very quickly how there's something wrong and that we need to take care of ourselves. And when we are poorly more than once, we get used or we get recognized that kind of poorly. And that means that our system can be very attuned to staying in that kind of threatened state, which is what Elise was talking about then. And that's what we see 100 % of the time in physio. Often I'm working with colleagues  who are doing the medical treatment for patients, but we do it at the same time because we register that as Elisa said, that you can get the really fab medical interventions. You might get some Botox to your bladder neck. You might have antibiotics or other kinds of medicines to help calm the bladder down. But we know that if you don't treat the whole of the pelvic region, everything will stay in that kind of threatened state.  speaker-2 (27:47.822) Mm-hmm. think that this is a really good segue, Julie, to also talk about how the brain learns pain. So the learning for pain is extraordinarily efficient. So if either of you thinks about how many times have you ever in your life intentionally touched a hot stove?  speaker-1 (28:12.056) That once. Yeah.  speaker-2 (28:13.486) Right? So that learning is a survival mechanism. It's laid down within minutes. And then there's the term, get back in the saddle. Do you have that in the UK? So if you fall off a horse and you don't get back in the saddle, you're not probably going to ride a horse again. Yeah. So that's why your riding instructor pops you back on the horse so that you unlearn the trauma of falling off the horse and you gain confidence again right away. So if you think about  you know, okay, you touch a hot stove and then you get bullied in school and your father is sort of abusive and you, you know, experience a sexual trauma as a teenager. And then you start having medical problems and you have painful medical testing. You're learning layer upon layer upon layer. It's a real process to unlearn that pain and the expectation of the pain. mean, even for me, like if I do a great big talk at the International Continence Society and it's a big room and it's full,  I'll go into my bladder before the talk and I have to tell myself on the way in the room, you just peed, you don't have to go. For some reason, there's that fear of having to go while you're sitting up on the podium.  speaker-0 (29:23.766) Yeah, it's so interesting. think that's such a helpful way to think about it. The web that can be activated and as you're saying, Elise, the brain being so quick to learn, we don't like that. Let's try and avoid that at all costs. And I'd be really interested to hear from both of you actually.  Because of that, because we automatically want to escape what's uncomfortable and untheistic, whatever knowledge we've gained about the experience that we've had that's caused us pain in the first place or caused us discomfort in the first place. Does that lead people to engage in things that perhaps ends up perpetuating some of these bladder or pelvic issues?  speaker-2 (30:02.99) I'm really interested to hear what Jilly has to say here. My understanding is that movement is very important. Tell me how you work with those patients, Jilly.  speaker-1 (30:13.678) So I would say that everyone I've ever seen has adaptive strategies to deal with their situation and I would say that they are always appropriate, they're always different but there are some commonalities but people are always doing stuff to try and help themselves feel better and to cope and to be able to work and look after their kids and they're generally seeing us because their strategies are failing, they're not effective.  The common things are if people are going to the toilet lots and lots and lots, they will reduce how much they drink and they think well if nothing's going in nothing will come out. The problem is that then if they're not drinking and they're not getting fluid intake then the urine they produce is really thick and it's strong and it's got lots and lots of salts and sugars in it and stuff that that irritates the bladder more so it perpetuates that cycle more. So often what we'll do is get someone drinking straight away a little bit more.  which most people when they understand that go, oh, okay. But it can be quite a difficult challenge when you've been stuck on the toilet all the time because of that. A lot of people are also doing two things. They're doing lots of just in case wheeze, which 100 % leaves is absolutely appropriate before you go on stage onto the podium. do the same. have three or four trips to the toilet, but I think every time that you leave the house is what people are doing. So if they leave the house, they'll have a wee before they leave.  If they're going to the shops, we have a nice shop called Marks and Spencer, which tends to have the nicest toilets. They'll always find an &S and they'll go and have a wee there while they're in the shops. And they might have another wee before they leave to go home, even though it's a 10 minute drive. So these just in case voids, as we call them, they can retrain your bladder to only accept small volumes of fluid. So it isn't used to having large bladder volumes. it...  becomes more antsy and tells you more about it when you've got smaller volumes. And the other thing they do is they try and hold and they will sit at home and it will be painful and it will be hurting and they'll feel like they really, really need a wee but they're desperately also trying to hold onto it to make themselves not go because somebody at some point has told them that they should hold for up to two hours and that's not really appropriate in all cases. So there was the problem we have with  speaker-1 (32:28.17) with all the evidence that we base this upon is that we're all doing our best from different countries and we've all got different terms. So the evidence in the UK says, yeah, we should use bladder retraining to help our people with urgency. But if you look at the studies that that's based upon, they use something called bladder drill, which is where actually we do timed voiding where we get people to go to the toilet and we very slowly eke it out. So you only hold an extra five to 10 minutes every three days from a short period of time.  and build that up. Whereas in the UK, we would call that bladder drill, the Europeans call that bladder retraining. We would call bladder retraining urge suppression where you hold it for two hours. But all that does is kind of reaffirm the signal. So it can feel a bit confusing, but that's why you've got an MDT. And that's why you see your GP, you make sure you see your urologist. That's our pathway in the UK is always to see the doctor to make sure there are no red flags or other pathologies that can be medically treated. And at the same time, go and see a physio and it's  It's important to have that care at the same time because we know that what's it called, longitudinal care where you have one thing after the other isn't as effective.  speaker-2 (33:37.038) Yes, I couldn't agree more. I really believe in a comprehensive multidisciplinary intake when a patient is first seen. So why would you only ask about bladder symptoms and not bowel symptoms, right? So then you see the urologist and you have to wait another six months to see the GI physician. It doesn't do the patient any favors and it definitely slows their multidisciplinary recovery, quality of life, et cetera.  I see the other side of it. So I'm doing the aerodynamics on the patient who has a bladder capacity of 30 cc's who thought they were supposed to hold it for two hours. You know, we see some really end stage bladders. So I guess my recommendation is to try the techniques, try the diet, try the avoidance of irritants, try the extra water, try the urge suppression, the bladder.  retraining, et cetera. But if it's not working and it doesn't seem to be progressing, change tack. So when we looked at our patients with chronic pelvic pain who were, we screened them for neurological signs and symptoms. We found that 70 % of people with chronic pelvic pain who screen positive for a neurological issue have a true neurological disease. So  One thing that people should be aware of is if they have multiple autonomic symptoms, like what I talked about before with the dry eyes, ringing in the ears, heartburn, bladder, bowel, burning pain in the extremities, that may very well be a neurological issue. If somebody has chronic overlapping pain syndromes, IBS, TMJ, IC, that probably is all related. If a patient has  pain in their lower back running down their leg, that's specific dermatome, probably needs an evaluation. Or if there is a combination of bowel, bladder, sexual, and lower extremity symptoms, we really should be looking at the lower spine. Those are just examples. If somebody has abnormal reflexes with their primary care physician, if the neurodynamics show abnormalities, they really need to move forth to the neurologist for evaluation.  speaker-0 (36:01.622) It's interesting, you know, the importance there of that multidisciplinary input then, because, you know, as I'm hearing both of you talk, I'm thinking about just how much can be missed when the questions aren't asked and the multidisciplinary input isn't there, right? So, Elise talking about some of these bladder issues or bladder symptoms might actually be a sign of a neurological issue. If we're not asking about these other symptoms, we would miss that. And also where you were talking a bit about  the overlapping conditions, so like TMJ, IC, interstitial cystitis, and bowel issues. I'm interested actually to hear from both of you a bit more about what that overlap might indicate and what might be going on there a little bit, because this is common actually for a lot of people, not just have one, but multiple of those sorts of.  speaker-1 (36:50.251) experiences.  speaker-2 (36:51.532) I'm interested in Julie's answer to that question, but I'll kind of complete my thought from the last answer. That is, when you see chronic overlapping pain conditions and the multiple autonomic symptoms, it's some sort of systemic issue, often neurological. So it could be multiple sclerosis causing that or QRML formation, for example. So those would be more central nervous system causes of systemic issues.  but it also could be a small fiber neuropathy. And the difference will come up when the patient has a neurological exam for a large fiber neuropathy and work out based on that. Julie, you've mentioned phenotyping with your research.  speaker-1 (37:33.76) Yeah, so we take, I'm in the luxury position that Elise and my other colleagues in the medical world do that hard legwork of trying to work out what all of the other potential pathophysiologies could be. So when patients come to see us, and I am one of the, I'm the same as you Elise, I see people that have been, you know, seven or eight years through the system and I've seen lots of people and they're still in pain and they don't know why.  which is actually from my point of view, a very hopeful stance, because that means that all of the big scary bad stuff has been ruled out and I'm very comfortable there. When I see someone who has multiple co-abilities, so the CRPCs as we say, we know that if you've got bladder pain syndrome, which we're talking about lot, you've probably got two or three of the other ones. I think about kind of how the whole neuroendocrine immune system has been upregulated. So how...  It isn't my job to fix all of the other issues, but it's my job to take into account the fact that if they've got chronic knee pain, neck pain, TMJ, they've got some allergies and they've got a panic disorder or anxiety, those are all real signs of a heightened neuroendocrine immune response in this person. So from a physio point of view, we always go micro and macro. And if we're thinking about phenotyping people,  I'm a big fan of Jason Kutcher's group when they talked about the widespreadness of pain, because I think it's really clinically relevant and it's a nice way I do a lot of work with clinicians and trying to get people in a place where they're comfortable in understanding some of the complexities around pelvic pain. And widespreadness is a really easy way of thinking about it. So if someone has pain that is just fixed within their pelvis, they have pain in their bada, in their pelvic floor, in their anus, wherever it is, but it's kind of within the pelvic region.  From a physio perspective, we will do very targeted pelvic region interventions. We will always do bladder, bowel, sexual function, prolapse if they are assigned female at birth, interventions, as well as whole lifestyle stuff. But we might get more hands-on and we might do more bladder retraining strategies or different types of interventions there, as well as pain and everything else. But if they've got a more widespread pain, so the pain isn't just in their pelvis, they have chronic pain in their low back.  speaker-1 (39:50.636) in their legs and their neck, wherever it is, even if it's in their abdomen. When we think about patients, commonly have endometriosis and bladder issues combined. With those kind of situations, we would do the targeted therapies and I still believe that we have sufficient evidence that hands-on manual therapy as an adjunct, as a part of what we're doing, is still effective and a good use of time and money and resources.  But we would also do more systemic interventions. So we would look at what kind of things can we do to calm down this neuroendocrine immune system? So can we send them if we have the luxury of a dietician to someone who will look at a diet that might be suitable for them? Have we got any form of psychology on board that can be doing more holistic therapies in whatever it needs to be? I, in my clinic, always use the 3PSQ, which is the Pelvic Pain Psychological Screening Questionnaire, which asks,  15 different questions of 13 domains of things that we know impact someone's response to conservative treatment. So if they report anxiety, stress, depression, low self-efficacy, insomnia, those kinds of things, I know that they're not going to do as well with physio as they could do if that was treated. So then we will always try and intervene and get them to the right people to see for those aspects. And then we will do general graded exercise.  social interventions to make sure that we're not curing but dealing with loneliness and all of the other health related impacts that are a significant part of it because this is a whole systems response to threat as opposed to just a tissue based issue. there is always a tissue issue. Pain is always in the tissues and pain is always in the context. And if we can improve, I don't prescribe.  So I can't necessarily directly change the tissues. I can to some degree, and we've got kind of 12 week efficacy in some things, but what I can do is I can help someone's contacts to improve their whole body, which then will allow the other therapies they're having at the same time to be much more effective. we have improved, you we see great improvements in pain and I'm...  speaker-1 (42:12.078) I don't have to be a believer because I see it in clinic every day. It's not any particular magic we do in our clinic. I see it everywhere because I teach all over the place. People with pain for many, many years do really, really well when they have lots of intervention at the same time.  speaker-2 (42:25.768) I absolutely give the message that just because someone's had pain for decade doesn't mean they're going to have it for another decade. And, Julie, I love the way that I just love everything you just said. And one of the main points in people with pelvic pain is whether it is localized or systemic. That's a huge distinction. And, you know, it doesn't just apply to pain. So if somebody has Yarn-Ore incontinence and everything else is normal, that's maybe kind of  standard overactive bladder, if they have urinary incontinence and they've gotten abnormal wide-based gait, you're probably thinking along a different line.  speaker-0 (43:05.75) Yeah, there's so much that you said there, Julie, that I mean, I could ask a billion questions about multiple elements of it, but just to go back to that idea of it being a neuroendocrine kind of immune system over activation that can affect these pelvic symptoms. Again, I think sometimes that can feel quite abstract, a concept for people experiencing a very specific.  type of sensation and they might say, yeah, I've also got bowel issues, but I'm not bothered about that. Or, you know, yes, you know, my energy is not great, but to go back to what you were talking about before, the adaptive strategies, they still feel like they're working for them and they're just about manageable. So they're really in this hypothetical example, you know, focused in on the pelvic region and that just feels separate for some people. What is it about these symptoms that can sometimes feel  particularly alarming. Pain is alarming anyway, of course, but what is it about bladder and pelvic symptoms that can feel particularly violating for people? In fact, let me ask that question first and then I'll ask my other one.  speaker-1 (44:13.772) So I've got a great, I'm gonna steal this from the professor himself, Neil O'Connell, we were chatting the other week. And what Elise was saying earlier, which was a brilliant summary, the fact that for our skin and anything that we can see, we've almost got like high res, high resolution information. We get loads and loads of specific information. But our viscera, our insides, our guts are low res. Because we can't see them, we can't touch them. We don't really, and we shouldn't really have an awareness of them.  There's lots of therapies that we do in physio and I vaguely think that they're probably not, they're not redundant, but they're not a useful metric. often when I'm palpating someone's pelvic floor who has had no pain or issue, maybe they've had a baby, maybe they've just come in with some menopausal associated leakage and I will touch their left pelvic floor and they'll feel it on their right abdominal wall or they'll say, no, I don't know where you are because we're not really meant to have awareness of our insides until  we have a threat to the system. So until we have, you know, reliable data that something is not right. So if we have an infection or we have an operation and there is an area that's been to some extent attacked, I think it isn't difficult for patients to get that. It just depends on how you explain it because, you know, as you said, treating everything all at once is really important. And 100 % of the time when with any patients with bladder issues in front of me, I always go for the bowels first because  They tend to be much straightforward to sort out and if you can improve their bowels, you improve their bladder. But with patients, it depends on what kind of things resonate with them. But often we work in an area with quite a lot of military. And I would say to somebody, if you were a soldier and you'd been in a battle, when you come back from the war zone, it's quite difficult to calm down, isn't it? And everything's on edge because you've been used to having to react and be prepared and your body is still like that.  And it's just about finding ways and phrases to get people to understand that that's a very normal, helpful process. know, what would, what your body doing, it doesn't feel great at the time, but it's actually really useful because it keeps us alive as a species.  speaker-2 (46:24.608) I think for me, the biggest clue that I, when I'm stuck on a patient, I will ask what their goals are. And it might be very different from what I'm thinking it would be. And I also, when I'm just sort of stumped, I just ask them to tell me the story again from, you know, fresh. Because people often do know what's wrong with their body or it comes out like, well, you know, I fell on the ice and then, and it just gives you.  speaker-1 (46:53.902) People are often really worried, aren't they? I find it's, it's scary. I having worked in physio for a long time and I worked in musculoskeletal as well, but pelvic health is something much scarier about A, your insides and B, your very personal, private, intimate spaces having pain. That is much scarier than having a shoulder pain or a back pain.  speaker-2 (47:15.564) Yes, and the testing and you know, it really can make people feel pretty squeamish. But also, mean, the innervation is, is, you know, if you if you have an if you have a cut on your arm, it hurts, but it hurts in a way that is, you know, you can sort of ignore it. But the innervation to the vulva or the tip of the penis is so incredibly dense that  when it's disordered, it's just there's nothing else you can think about.  speaker-0 (47:48.098) Yes, that's a really good point that about the nature of that innovation makes it so distracting and attention grabbing. Unlike a lot of other pains in different areas, pain can generally be distracting, but there is something very specific about that innovation and how it feels. And I think it can also be hard to disentangle, right? What element of that experience is because of the specific innovation and then  As you were talking about a little bit there, Julie, the sense of taboo or privacy or shame, like it's in this region that we don't talk about, the region that we call the down bears. Then that makes it even more, I guess, threatening as a sense of, I need to go and talk about this with somebody and maybe have an investigation.  speaker-1 (48:39.246) It's a hugely taboo area and we're trying to write something around this at the moment that pelvic pain is different than other pain, even though pain is pain. We all feel pain, we all understand pain. It's an area that inherently biologically we are driven to protect because it's important for procreation. It's also an area that we don't, it's two main functions. It's very complicated, you know.  really complicated the fact that one group of muscles can tighten in one area and relax in another so that you can have a wee but without having a poo and you know orgasms happen all this kind of stuff, it's very complicated area but it's two main functions being you know for continence being able to go to the toilet and relieve things but also being part of sexual arousal and that kind of function when culturally throughout the world we have huge taboos about discussing both of those issues.  and even more taboos about discussing when those things go wrong. Those heightened layers of context, I think, build a very specific area, breeding ground for an experience of pain which is beyond other chronic pains.  speaker-2 (49:51.022) It's variable. think some patients really do feel a lot of taboo talking about it and some patients are very matter of fact. So I just sort of give people room to be who they are with the evaluation. I mean, don't you find it's quite variable, Jilly?  speaker-1 (50:06.892) Yeah, I mean, I'm thinking that the spectrum is from patients that are quite happy to do self-interventions with kind of palpating and stretching their muscles with their own hands, all the way to people that, you know, had really traumatic experiences around menstruation and didn't know that menstruation was a thing the first time they bled, then freaked out, understandably. And then that has continued to be a problem in their life. You know, the understanding and education around normal bodily functions is very variable.  speaker-0 (50:36.884) Yeah, just that kind of broader relationship with one's body can then actually influence the experience of physical sensation in that way, right? If there's a pre-existing sense of shame or even just lack of knowledge and familiarity, that can then make for an increased likelihood that you're going to have a threat response, let's say, to these pelvic symptoms or react to the different  instigators that might then cause like pelvic issues.  speaker-1 (51:09.166) And it's not just specific to pelvic region, but there's a classic meme that goes around of somebody really quite upset saying that I've had this letter from the doctor calling me an idiot and pathetic because they can't find my pain, medical gaslighting. But it's not the doctor has written a letter back to the GP and not done it in good language and said, you know, this pain is idiopathic, which is our terminology for we don't know where it's really come from.  And that hugely impacts someone and we can do everything we can to try and improve our language. There are always going to be slips, supporting people to understand things can go a long way.  speaker-0 (51:50.968) I just want to pause here for a moment to highlight just how interconnected physical and psychological experiences are. This is why tending to emotional wellbeing when you have bladder or pelvic issues is so important. It's also why I'm so proud of the tailored Me Plus support programme I've developed with Convertek Continence Care for people using intermittent catheters. This programme is designed to support people at every stage of their catheter journey.  from those who are brand new to those who've been doing this for years. The Me Plus program integrates the practical side of catheterizing with the emotional adjustment side that so often gets overlooked. We've designed the program using the best health psychology research insights to provide educational tools, practical activities, exercises, and audios to help you process, build confidence, feel informed, supported, and less alone. If this is of interest to you and you'd like to find out more, visit convitech.com.  and access the Continence Care Mi Plus resources. Links can be found in the episode description.  speaker-2 (52:52.718) That's a very important segue because I have advice for people who are seeking medical care. I don't know what it's like for you in the UK right now, but wait times can be extraordinary here. And I think it's not good medical care. But once you have the interaction with the physician, you have to keep in mind that pelvic pain has at least 100 causes.  crossing almost every organ system in the body. And so the reaction of the provider may be that it's easier for them to think something's wrong with the patient than to admit their own shortcomings that they don't understand what's wrong. And it's just, it's sort of a dreaded diagnosis because the physician feels ineffective. It's very intimidating for the physician. And also you're looking at someone, even if you're at the nicest physician in the world, you're looking at  someone and feeling that impotence of not being able to help them and it's a terrible feeling. So to advocate for oneself, I do recommend having a document that is, you can print off the computer every time you see someone and update it, that just sort of spells out the initial story, the symptoms.  what you've tried, what testing has been done, the consultations that you've had and have it all in a very organized but super concise fashion and keeping it updated because otherwise it's such a long story that it can't be done in the amount of time allotted.  speaker-0 (54:29.782) It's very interesting that you say that as well, Elise, about the medical professionals reaction. that's definitely, I see a subsection of the population often with a lot of complexity in health, a lot of pelvic and bladder issues. And unfortunately that's been their experience a lot of times over because it's not a straightforward diagnosis or even treatment trajectory once they get diagnoses or indications of what's going on. They quite often are made to feel like.  they're doing something wrong or they're over-exaggerating their symptoms or have this, I think also that phrasing around pain tolerance. We use it in research in a very different way to how it actually feels when you're being told you've got a low pain tolerance. The questionnaires around catastrophizing, they capture something really important in terms of like...  where does your brain go when you start experiencing pain, but when you're told, you're catastrophizing this, it feels very different. So you speak to something that I think a lot of people that I work with and more broadly as well feel that if the doctors don't know the answers, then they just kind of want to get rid of you. And I wanted to ask you a bit about neurodynamics, what the neurodynamics testing is for and like what people can expect because that's a common thing that comes up right when people have issues with bladder function. But before I ask you, I just want to share  My experience a long time ago when I was experiencing bladder issues, so it done the thing that we're kind of talking about here. It morphed from having repeated urinary tract infections to then these hard to pin down physical sensations that no one could really make sense of, not the urologist, not the gynecologist, not the urogynecologist. I was having bladder installations. In fact, it was never suggested to go to a pelvic physio. I think that would have made a big difference.  So it was this kind of couple of years journey and I'd moved from up North in Leeds to London to study a master's in health psychology. And I'd finally been referred for your dynamics because I was having at this stage, my pain was kind of gone, but I was having this increased urgency. So what they were calling overactive bladder, it was that, you I could hold it, but I would have the sensation of needing to go.  speaker-0 (56:48.684) just at a much lower volume. So within 10 minutes of having gone, I would feel, I'm starting to need the toilet again. And I could suppress that for a long period of time, but it never seemed to make any difference, which also reminds me, I want to come back to bladder training drills in a moment. So anyway, I go for this Eurodynamics testing and I didn't know what it was. I was connected to all of these kind of urethral contraptions and had dye pumped in my bladder and what have you. I had a hospital gown on.  and was just there alone with this one doctor who wasn't really communicating with me at all. And then he'd be like, now cough. So I'd cough and now sit on the toilet, which was a fake toilet so you could see exactly where your wee was going and now stop. And he was meanwhile looking at these charts and again, not really communicating. And at the end of this, he was like, yeah, it's all normal. Takes the catheter out. And I  got the most intense pain, which had been back to when I was really flaring, which makes a lot of sense in the conversation that we've had so far. This increased sensitization, particularly in that area, all of the different things that I'd had to that point, makes sense that I would not react well physiologically to that, especially in that context, which just felt very unnerving. then I was like, really need to go to the toilet. I feel like I'm about to wet myself. And he was like, taps the screen, there's nothing in your bladder.  I was like, well, that's exactly my problem. I feel like I need to go and there's nothing in there. He quite literally huffs and puffs and shows me the door to go to the toilet. But the door to go to the toilet, you go out and then there's a waiting room full of patients and I had a backless gown on. I'm holding this backless gown, going into this toilet, sit down, and I'm trying to go, but there is nothing in my bladder, but it just hurts. Then after, I'm just waiting for the sensation to subside and get the cues that.  okay, you can calm down, you're in the toilet. And then there's banging on the door and the nurse is like, will you please leave? So then I go back in and I was talking to the, it's like, just, I don't know what to do. Like I feel horrendous. And he was like, there's nothing in your bladder. And then he's arguing with another doctor that wants the room. She's not left yet. So obviously this is an awful, awful experience, but in contrast.  speaker-2 (58:50.261) speaker-0 (59:08.588) When I went actually to go visit a mutual friend of ours, Lindsay McKernan over in Nashville, I went to one of the Uronchi clinics that she works in and was shadowing the process of different interventions and different diagnostics. I couldn't believe it. I saw multiple urodynamics testing going on. The women just looked like almost zenned out, just so relaxed and they were being talked through it. They were being told what was happening next. Had the tubes like nicely gradually extracted.  with full communication, how are you feeling? Yeah, fine. I was like, this is a very, different experience, but it really does reflect a lot of the influences of the things that we've been talking about today.  speaker-2 (59:49.406) The environment. I really think that people need to be able to expect what's happening. So I actually created a video about urodynamics. It's on Sacing Pelvic Pain.org. There's also one about cystoscopy. You know, it's really important that people have know what's happening, that the person who works with them is trauma-informed, gives them control over the situation, privacy is maintained. I cannot imagine.  speaker-1 (01:00:03.054) Fantastic.  speaker-0 (01:00:03.502) Music.  speaker-2 (01:00:19.278) that physical setup of the waiting room and the bathroom. I'm sorry that happened to you.  speaker-1 (01:00:26.126) It sounds like a really horrible experience that we wouldn't want to recreate and it's frustrating from my part because I know that there is communication training that goes on and I know that people can do better and that it's for clinicians, you know, we are wildly desensitized to looking at vulvas or penises or, you know, genitals in general and it's just a Tuesday for us but it's not just a Tuesday for you and it...  there is no situation where you can't be talking out loud through your processes really easily.  speaker-2 (01:00:58.934) My favorite part about the Eurodynamics is it's the only time I ever get to chat with my patients.  speaker-1 (01:01:04.558) Mmm. Yeah, you've enough to wait. You get a full 20 days.  speaker-2 (01:01:08.014) How many with us like do you ever work with pelvic pain patients? Let me hear about it You know, do you have kids and see your dog came closer when you were talking about the upsetting experience and you know  speaker-0 (01:01:19.804) That makes such a difference, doesn't it? know, it's so lovely.  speaker-1 (01:01:23.054) And little strategies like, you know, 100 % of patients that I treat with pelvic, well, we're not 100, probably 90 % of people with pelvic pain who go to have your dynamics and need a review for whatever reason will get some kind of flare at the time or afterwards. And there are some simple things that the nurses and the doctors could be telling them. you know, simple go to the toilet and quickly release pressure onto your posterior pelvic floor at five and seven o'clock. That can inhibit some of this urethral type spasming and bladder neck spasm pain.  And in lots of people, we teach them to do that right when you're going to cystoscopy or you're going to your aerodynamics, when you get out and you're aware and able to try this, this can help sitting on a heat pack, taking a heat pack with you and things like that just to make it slightly less traumatic experience. Because these things need to be done. You know, the doctors need to be able to do these tests to check people haven't got bladder cancer and other scary things that would need treatment. But we we need to make it a bit more comfortable for people.  speaker-2 (01:02:18.03) I think also just in general for people that have tools that they have control of for any of the symptoms they're having at home or in the setting of testing, taking acetaminophen, Tylenol, I think you call it paracetamol prior to the procedure, having Finesse puridine to take as a rescue afterwards. If I have a patient who has severe urethral pain with urodynamics, I'll actually instill lidocaine at the end of the test as a rescue.  And Jillian just gave me some great new ideas that we can do on the spot.  speaker-1 (01:02:49.154) I feel like we need to work together anyway. You're an absolute ally of a neurologist. This is fantastic.  speaker-0 (01:02:55.564) And then this is my favorite thing about doing this podcast is getting people together in this sphere, you know, doing such amazing complimentary work.  speaker-1 (01:03:02.924) It's, but it can be done. And this is what, you know, I've been out there saying for a long time is that trauma informed care doesn't mean that we have to be the psychologist. That's what we have our psychologists for, but it means treating everyone that comes through your door as if they have some trauma that they have not yet told you about. So you just, it doesn't take that much more effort to set up your clinic in a way that can be supportive to everybody and allow people to have more positive experiences.  speaker-2 (01:03:30.2) Jilly, I used to screen people for history of trauma and sexual trauma, because that's what we were taught to do. And then I realized that some people had it. I could tell they had a history of trauma during their procedures and they hadn't disclosed. And so one of my colleagues who is a social worker who works with youth and penitentiary did a talk for us on trauma informed care. This was 10 or 15 years ago and it totally changed what I did overnight.  She talked about giving space to disclose trauma. And so now I use a very simple technique and I teach every student I ever work with is before a procedure or an exam, I just ask the patient, there anything you want me to do to make you more comfortable during the exam? I'm super gentle, but let me know. Then people choose to disclose, choose not to, they tell you exactly what they need. And then you can also verbalize.  how and whether you can accommodate that.  speaker-0 (01:04:29.742) That's such a great question as well because it gives permission, which seems like such an obvious thing maybe to some people, but to others absolutely not, especially in that what feels like a power imbalance situation where you're being examined. just, there anything I can do to make you feel more comfortable? Whether or not somebody knows how best you could do that, they feel like they've got permission to explore that with you. So it opens up so much.  speaker-2 (01:04:57.954) Yes.  speaker-0 (01:04:58.894) I ask a little bit, can we go back for a moment to the bladder retraining and bladder drills because there was a few things coming up there around when one might be appropriate versus another. for some people, it might be helpful to delay going to the toilet. Could you just clarify a little bit more about what might make that more so and what that then might look like? And that would be.  blood of retraining, right?  speaker-1 (01:05:29.6) Yeah, okay, so in really simple terms, when we think about urgency, there's kind of three-ish reasons that you might get urgency. To go to the toilet, it's normal. What happens first is that your urinary sphincter, the kind of muscle around the tube, relaxes and that prompts the bladder to squeeze and empty because the urinary sphincter relaxes and the pressure sensors go,  we're open, there's less pressure, make your bladder squeeze. So the first reason that you might get some urgency is if you've had a baby or you've got some tissue laxity, which means that that front part of your bladder is not supported. So when you go to shout, jump, cough, step off a curb, run, and there is a jolt around your bladder, which isn't supported as well as it could be, you get a change in that pressure dynamic and there is an appropriate response of your bladder.  but that means that you go to shout for your dog or for the kids that are crossing the road or whatever it is, and then you wet yourself or you feel like you're going to. In that situation, we want to improve that support and the doctors used to do operations to help with that, but it's been stopped in the UK and I think in the US at the moment as well. So what we do is we do lots of pelvic floor supporting training and there are other bits and bobs that we can do to support that bladder. And that works really well with things like the knack, which is where...  When you feel that urgency, you pull in your bottom hole as if to stop from breaking wind. And we know that queuing your whole pelvic floor just from the posterior element is the most effective at getting a whole pelvic floor contraction that will support your bladder. So using the nap, pulling it in when you feel urgent. If that relieves the urgency, then you've probably got something vaguely to do with support issues. At the other end of the fence, then we have a twitchy bladder muscle.  which we call DO or detrusor overactivity, which we give to the doctors to sort out. They do medications, they do other bits and bobs, installations, injections, but that's when your bladder gets a bit twitchy and it can get twitchy for lots of different reasons that at least can go into at length. And the mid zone, which I would say is probably the majority of patients that we see in physio because everybody else has been screened off and treated in a different way, is what we call sensory urgency, which is where  speaker-1 (01:07:44.012) the lining of the bladder has become a little bit heightened for whatever reason. A lot of the time it's to do with menopause and our estrogen receptors. It might just be that you had more receptors to begin with. It might be something else has kicked it off. But in that situation, when your bladder should fill to 100 to 200 mils before you kind of hear, I need a wee. But actually you're only getting to maybe 30 mils before you're starting to hear that and be aware of it. So the capacity of the bladder is reduced. With those people, we wouldn't want them to hold.  because all that's going to happen is that that signaling, that sound you're getting from your bladder just gets worse and worse and worse. And by forcing people to hold more when they're really uncomfortable, we are just increasing that feedback loop, that learning that there's something wrong and that we need to know more about it. So for those people from sensory urgency point of view, and the way that we work it out is we do a two day bladder diary and we plot it on a graph. And thanks to Tarem Hallam who came up with it and we look at the  predicted urgency scores, how urgent they are with each type of void and how full they should be. And that gives an indication of what's going on. So if they've got this sensory urgency, they're a bit excited or hyper excited in that kind of area. We will then do bladder drill. So we will take that bladder diary and we'll look at it and go, right. So the shortest period of time before you had an urge for the worst kind of urge or an urge three was 45 minutes. So we're going to start at 40 minutes.  When you wake up, you're going to work out every 40 minutes during the day, you can have a wee, and then every 40 minutes, even if you don't need one, you're going to empty. Because our idea is that if this is the threshold at which you start hearing about needing a wee, we're not going to go past it. We're going to empty before we get there. Until, for three days in a row, you can go for a wee without having any of that urge three, urge four, uncomfortable level of urgency. And then we push that threshold 15 minutes.  And then you do that until you've got three days in a row where there's no issue. And then you push it and push it until we reach about two hours where normally people are voiding 200 mils ish or more. And then it's vaguely fine for them. Usually it doesn't take very long. It takes kind of two or three weeks. We will regress, but only by five minutes to 10 minutes max. We won't ever go backwards. We'll always hold. And if we're having issues with holding, then we might go back to our urologist and say, there a medication that could support us? Any kind of anti-maskerenics or anything else?  speaker-1 (01:10:06.786) Have we looked at diet changes? Have we looked at lifestyle factors with stress and what's happening in those moments? And we'll do everything we can to hold and then make progress. But with people where they have more behavioral based urgency, so things like key indoor urgency, support based urgency issues, and to some degree, detrusa over activity-ish, there's some evidence in it. Once they're on the medication for detrusa over activity, we'll also do some pelvic floor training. And it's not just...  at the point of urgency, it's all day every day, you three times a day, we'll do sets of pelvic floor two endurance, whatever that is, it might be 17 seconds, five times in a row, whatever it is, as a way of building up that loop that Elise was talking about to help calm things down, and then behavioral strategies for in the moment when you get those urgent moments. And what we find is that about three months of pelvic floor training, and the urge strategies reduces that kind of urgency as well. But that's where  It's very different and that's why it's really important that you see a provider that understands and it doesn't really matter who it is. There are nurses that do this, there are physios. I know there are lots of doctors that give great advice as well when they have the time, but they've often only got five or 10 minutes and they've got a million other things to look at. yeah, get someone that can work out what's going on.  speaker-2 (01:11:26.03) I do find that that's a very difficult symptom when someone needs to urinate every 10 minutes. I agree with what Julie said earlier about the concurrent evaluations. So it takes a little while to get in for visits with me. So I'll send to the physiotherapist if they could attend immediately. I would see them back in six weeks, but usually we have to wait three to four months for them to have finished. And then  If people are really miserable, I'll start a beta-3 agonist medication before they even go to the physiotherapist, but most people I encourage to start PT without a medication.  speaker-1 (01:12:09.364) super helpful that kind of like ruling the interventions because a lot of the time when you say people come with that sheet of all the things that they've tried and you know I'm in that evidence I'm in that research base and teaching it that actually a lot of those things are really helpful but they need to happen at the same time.  speaker-2 (01:12:26.368) Mm-hmm. Right. So I also use a lot of alpha blockers in women. Tamsulocin, Alfusocin, Silidosin, and Terazocin is another name, Doxazocin. So when somebody has a very tight bladder neck, it can also give you that feeling like you need to go all the time. In these patients, I see this hesitancy, difficulty initiating the stream and sometimes burning with urination.  And an alpha blocker medication can relax that involuntary sphincter of the bladder neck, the external sphincter, one we use to control urges, that one's the voluntary one. And if that medication helps, then it gives us a clue that the bladder neck is a culprit, the alpha blocker medications. Only caveat is that it also can lead to a slight drop in blood pressure. So if the...  person experiencing those symptoms also has POTS or low blood pressure or dizziness when they go from sitting to standing, we should be really careful in trying that medication.  speaker-1 (01:13:35.136) What we often find is that if they are, if we manage to get that dual intervention going at the same time with somebody, that we can get them on the medication, you know, if within a few weeks of bladder retraining, we're not making any progress whatsoever, get them on the medication, keep on the medication as a bridge, finish three to six months of intervention from a physio point of view, and then slowly come off the medication and they're fine and they're coping.  speaker-2 (01:13:59.864) We often reevaluate the need for medications after physiotherapy. There are many, many interventions that we can use. We can do botulinum toxin to the bladder, the bladder neck, the external sphincter, the vulva, the pelvic floor muscles. We can use neuromodulations, so sacral neuromodulation with a little wire next to the sacral third nerve root. We can use neuromodulation of the tibial nerve. There are new devices approved in...  the United States that those can be implantable. But what people can do at home today is to order a little TENS device and put a TENS over the tibial nerve in the ankle. It's spelled T-I-B-I-A-L. And then the balance goes on the arch of the foot. And you can see if that helps with urinary urgency or pain. Julie, do you have do you use TENS a lot? And do you have recommended settings for different  speaker-1 (01:14:51.886) 100%. So it's got really, really good efficacy. It's as good as oxybutynin or solifenicin in 12 weeks of treatment for bladder urgency for overactive bladder. But it's also really, really good from a bladder pain perspective. So kind of when we're at IUGO, we were talking about that last year. And I went to UKCS last year just to benchmark what everyone in the country is doing from what we call posterior tibial nerve stimulation, PTNS.  or percutaneous tibial nerve stimulation. And we're all using the same settings. It's about 100 on your wavelength, 10 to 20 hertz to get depth into tissues. And it's round about anywhere between 20 minutes a day to an hour. If anyone's used a TENS machine, it just feels like a little tingle. But what it does is it stimulates your posterior tibial nerve. And that nerve, we can get to it at your ankle. So it's a long way from the area that's sore.  So it's not going to be a horrible intervention. A lot of things in physio, we try to move away from the area that hurts to begin with. So we treat other areas to get access to that bit so it doesn't hurt so much. But treating the ankle, it's just like a tingle. You can put it on both ankles as long as you've not had any skin cancers or any operations on your ankles that they put metal plates in. And half an hour to an hour a day, five days a week, you get a gold sticker from me. But we know that treatment, it needs to last at least 10 weeks. And I've had  patients who had significant mood disorders, should we say, that were being cautiously watched with pudendal neuralgia type symptoms or really extreme pain with sitting loads of urgency who actually, know, tends is a life changing intervention. It's a really good predictor that they'll respond really well to neuromodulation as well. But a lot of the time we can get away is very cheap, really affect you sit down and you put it on while you're watching TV for an hour every night.  easy.  speaker-2 (01:16:48.886) And it gives you that tool, you can use at home. The tens unit is the tibial nerve feeds back to the sacral nerves. I do have one big sort of caveat. We've written a review of tarlofsys, that's spelled T-A-R-L-O-V. And in my patients with pelvic pain who need a neuromodulation, I do like to perform a pelvic MRI or a lumbosacral MRI to make sure there isn't one of these little...  cysts around the nerves in the sacrum because I don't want to be putting a needle through it with the neuromodulation. And Tarlofs cysts are often ignored by the radiologists because historically they were thought to be asymptomatic, but the real data is that 15 % of the population has them. They are more common in women and 15 % of those individuals have symptoms from the Tarlofs cyst. So especially if the symptoms are in  a specific dermatomal pattern like pelvic pain with pain running down the leg in a dermatome pattern along the sacral nerves, that is not pudendal neuralgia and it may be a sacral nerve issue because the pudendal nerve really only covers the perineum.  speaker-1 (01:18:04.692) Do you remove those? Do you remove the talosys?  speaker-2 (01:18:07.694) So the treatment, there are many neurosurgeons who believe that they are non-surgical, but there are two neurosurgeons in the United States I sent to, Rudy Schroet in Sacramento and Frank Fagenbaum in Dallas, and they use a dural wrapping technique. So they lift the sacrum and then they wrap something around the tarlofus to make it narrow again and support it.  And because what the Tarlath cyst does is it expands and it stretches the sacral nerves and creates problems with the sacral nerves. And that way, because they're wrapping rather than excising or getting into the cyst, they're less likely to have trouble with a dural spinal leak. And the dural spinal leak is a big reason that neurosurgeons are afraid of or hesitant to operate on the Tarlath cyst.  speaker-0 (01:19:00.254) This is so fascinating and I'm just thinking what I treasure trove for so many people because there's so many things really to consider then, know, pelvic pain, we've already talked about the multiple potential influences, but also just the tailoring of treatment and the importance of this kind multidisciplinary input to get these kind of insights and, you know, be aware of certain things that might be affecting efficacy or actually might be causing symptoms when you're often told actually that doesn't cause symptoms.  Can I also ask you, Elise, a bit more about the detrusa over activity that Julie mentioned? You were talking about the high bladder neck as well. Could you explain a little bit about what causes that and what approach you might use or approaches?  speaker-2 (01:19:46.754) Yes. So the detrusor overactivity would have to do with, I guess, overactive parasympathetic autonomic nerves. And the tight bladder neck has to do with high tone sympathetic nerves. You can think of the bladder neck as preventing urination. If you're running from a bear, your adrenaline's high, your sympathetic nervous system is going, you're not going to be stopping to urinate. The mind, body heightened anxiety is  going to make it maybe more difficult to pee. I'm sure everyone with normal neurology has had that moment where it's hard to start in a certain situation like a cold seat in a bathroom at a gas station, for example. But there's an additional component when something's wrong with the autonomic nerves, and that is that the parasympathetic nerves inhibit the sympathetic nervous system. So there's an added layer that when they're not functioning, well, they can't inhibit the sympathetic nerves and therefore  sympathetic nerves can be tight. Now, the autonomic nerves can have problems independently in the small fiber neuropathy and other peripheral nervous system disorders where it's just the peripheral autonomic nerves that are having trouble. These are the thin, poorly myelinated nerves that carry the viscera and also pain signals, the A delta and C fibers. But also the autonomic nerves can be impacted.  by the central nervous system because the central nervous system controls the autonomic nervous system. So if there is a spinal cord injury, by definition, you have a problem with the central nervous system, but it's also going to impact your autonomic nerves.  speaker-0 (01:21:27.63) I think this interaction as well between the central nervous system and the autonomic nervous system and how that innovates the bladder is also super important for people to understand because we don't necessarily easily make that link. to your point and that mind-body connection, we talk about being in a sympathetic state when we're activated because we're stressed. especially on social media these days, everyone seems to be  reaching for being in a parasympathetic state so that we can regulate our nervous system. And obviously there's a whole load of problems with overstating various bits and bobs there. so it can be quite surprising to people to understand that A, the sympathetic nervous system innovates the bladder and has an impact on our bladder function for everybody. And B, also the parasympathetic nervous system and that we can have overactive sympathetic nervous system.  issues that impact the bladder function, but also overactive parasympathetic nervous system that impacts bladder issues. Could you talk a bit more about the overactivation of the parasympathetic nervous system? What might contribute to that and what happens bladder-wise there?  speaker-2 (01:22:37.966) Yes. So if you have an overactive parasympathetic nervous system that could be from a cervical spinal cord injury or a thoracic spinal cord injury or multiple sclerosis that can lead to overactivity of the bladder and also overactivity of the external sphincter. So the bladder can be overactive and not empty. I think that might be different than what's happening with most of the audience for the podcast where people are  not living with a diagnosed neurological injury or disease and they still are having bladder symptoms. So there may be an occult diagnosis, something that hasn't been recognized yet like multiple sclerosis or a tarlofsys which can impact the nerves directly rather than from up above or it can have to do with simple overactivity. I call  I call this grueblige ladies, like people who might be my age who come into my clinic and they simply have an overactive detrusor muscle where the parasympathetics are firing because of a sort of inherent irritation that is not thought to be a neurological condition.  speaker-0 (01:23:50.786) Brilliant, thank you. That is super helpful, I think, for people to understand that innovation and the links there.  speaker-2 (01:23:57.966) Sula, I would also add that you could have someone your age who just has high tone pelvic floor muscles and that crosstalk that we talked about with some malankayas data on the rat nervous system that they injected, that alone can trigger the nerves. Jilly, you may have more comment on that as well.  speaker-1 (01:24:18.562) So yeah, pelvic floor is a complex conversation, but we're learning more and more about it. Rachel Warman's meta-analysis and sister review a couple of years ago, might be last year now, showed that we do have data that suggests that across pelvic pain conditions, and I think she was looking at women and she has done a subsequent paper on men, that we do have an increase in tone compared, an increase in resting tone, and certainly some of the stuff at the Fab.  MFM lab in Canada has shown, and vestibulodynia and other kind of vulval pain conditions, we do have an increase in pelvic floor tone. Really what that means is a bit like walking around with your shoulders stuck around your ears the whole time. And when we do that, we all know that if we are doing lots of work on the computer on our shoulders around our ears, that our neck and our head can ache. It doesn't necessarily mean, you know, if you prod the muscles in your shoulders, they are sore because they're overworking, but also you get a pain in your head.  And that is a kind of a bit of a good metaphor for what can happen in the pelvic floor. For a long period of time, we were considering that pelvic pain was caused by increase in tone. And so by reducing the tone, so physios would give you, want of a better word, a massage and teach you how to massage your own pelvic floor to calm it down a bit and relax it a little bit, get those shoulders from your ears down.  And we thought that by doing that, by changing the tone, we were changing the pain because the pain was caused by the clenching muscles. But there's been quite a lot of work since then showing that muscle patterns are different and very individualized. in some people with bladder pain, there's a very useful pictures in a paper by Dias where they did lovely EMG studies of people with bladder pain and people without.  and what they found is that it was a very individualized pattern. We would expect people with bladder pain to have really tight pelvic floors at the front. And there were some people that had that, more in the bladder pain, but there were also some people that had that who reported no pain. So tone is something we see more often in pelvic pain, but we also see pain. And pain and tone are two symptoms of the same condition. And what we now think is that by going after the pelvic floor, by treating it, by massaging it,  speaker-1 (01:26:41.334) it's probably that we're having much more of a conversation with the local nervous system to say calm down. that because it's muscle, it's a bit like your skin, a bit like Elise was saying, where we've got like much, much more awareness and much more definition that by massaging the muscle, we're getting into the system and getting the whole system locally to calm down in a really effective and useful way. absolutely we still try and.  calm the pelvic floors down of everyone that's in pain, but we won't necessarily say that's the cause of the pain anymore. It'd be part of the pain picture and it certainly is that pelvic floors are sore and tender when people have pain. But we also know, so we brought out a paper last year, we did a big review of different exercises for pelvic pain and found that there was no negative to doing actual pelvic floor exercises where you do clenching as well as relaxing when you have pelvic pain and actually there was some evidence in about nine.  papers of the 11 that showed a real significant benefit to things like sexual function and pain if you do exercises as well as relaxing down. So we're in this space where it shouldn't be done for everyone but we can train people, we can get people moving more and we can relax them. But it's probably just because doing that it's a bit like having a massage to your tight muscles in your shoulder, it makes everything feel better.  speaker-2 (01:27:58.358) It's really an art what you do, Jilly. There's like no one size fits all. So when someone has detrusor overactivity, or we suspect or know from the neurodynamic testing, are you teaching activation of the external sphincter to inhibit that detrusor overactivity?  speaker-1 (01:28:18.798) So the practical response to the evidence and the reality of clinic and the lacking being, not being able to see urologists is I will teach everyone the NAC in that first session and I'll say go home doing it. And if in that first week, if they have a response where they say, actually, yeah, I did it once or twice and it made a real difference to my urgency level, I'll say, right, we're going to head down urge suppression because that means you're probably going to benefit from pelvic floor training for three months.  And if in that week they go, I tried, I really tried, but nothing happened. If their pelvic floor is a bit naff, which is a technical term, so it's not very strong, I will strengthen it and then retry all that when they've got more than a grade three out of five. But if they've got a reasonable pelvic floor and there's been no benefit in one week, I'll say, right, immediate change. We're going to do bladder drill for three weeks and we're going to see where we get to. And I always have a three week cycle and we tend to kind of work in three to six week cycles to see, we achieving the benefit that we're expecting? And if we're not, back to the doctor.  speaker-2 (01:29:15.308) You have to tell everyone what the NAC is.  speaker-1 (01:29:17.266) The knack is gracing. So pulling in your pelvic floor quickly. Eyebrows help if you pull them up at the same time. So back passage up and forward as if to start from breaking wind. You can close the middle and the front as well if you want to, but it's not necessary. We just need that back area to come up and forward because it gets everything working. Do it and hold on when you are about to feel your urgency or when you are feeling your urgency. If everything calms down and changes in that moment, it's a really good sign that actually doing some pelvic floor exercises will really help.  but we would only ever give that to someone after we've assessed them and checked that they're not in a higher tone situation. It doesn't mean we won't give it, but if someone's in a higher tone situation, I'd be more likely to say, you need to sit down and then breathe and calm and relax your pelvic floor to see if that changes your urgency.  speaker-2 (01:30:07.02) higher tone you mean when you examine them their pelvic floor muscles are very yeah tight.  speaker-1 (01:30:12.28) So tight, non-moving, not able to go through range of motion, not able to relax.  speaker-0 (01:30:16.322) Yeah, it's really interesting as well, Jilly, hearing you talk about that and how the manual manipulation, if you like, can help kind of relax people's kind of pelvic floor and area, but partly because I guess part of my mind was going towards this sense of like renegotiating the relationship there because of these metaphorical high shoulders. Now there's this sense of like, this is getting, you know, this is a safer place for to be and that can start updating.  how people are also relating to it themselves. I know when I see a lot of patients with bladder issues and hypertonic pelvic floor, hopefully seen a pelvic physio, usually already seen a pelvic physio by the time they come to me. One of the things that they struggle with is I don't know how to relax it on my own. So they rely on the manual manipulation if they, and some people have issues doing that themselves, but kind of conceptually they find it hard either  just generally or without doing some kind of manual manipulation. So when you're talking about doing the breath and even that metaphor of the clenched shoulders and then relaxing, think that's where, and I'm curious what your thoughts are, both of you on this, but that's where imagery can be super helpful for people to start relating differently and helping them, yeah, guess, relax that area through visualization if they've got the ability to do so.  speaker-1 (01:31:44.536) So yeah, we use it all the time. It's only hard when people have got aphantasia and they can't think like that. That's when you have to give them devices for biofeedback to help them see it. But yeah, we will always palpate. So we'll touch their muscles inside and obviously gloved and gowned and see what the muscles are doing and then see what works for that person. So my go-tos are imagine that your pelvis is ice and it's melting and it's chocolate and it's melting. Imagine you've got a beam of, you know, I'm beaming the torch into that.  right hip now, can you feel that right hip melting, melt it down. If they can't do that, structural points, the pubic bone and the coccyx bone, can you feel those two bones right now? Touch them with your hands on the outside, now make those bones move further apart. Your two sitting bones, feel them on the outside, you can feel them, I can feel them on the inside, now move those bones apart. Now do all four bones apart. And we do that slowly over time, flowers opening, leaves opening, anything.  and whichever one we can feel the muscle go whoop and relaxed, we'll say, right, that's your one, go home and practice that. But none of it's rocket science, think we, physios really like to sometimes overcomplicate what we do because it's quite hard to evidence what we do. I think we're really nice to people and I think that makes a lot of the difference. And we've got a lot of time, we get an hour with a patient generally, if we're lucky. So we've got a lot of time.  And when we do this kind of massage stuff, we know that there are autonomic neuropathies and muscles that are held in tension for a long period of time. like, know, Tom Chalimski's work and that group have done, we know there are muscular changes and vascular changes in the muscles. So by touching them with your own thumb to help, you are desensitizing. You're also doing lots of that self-efficacy. I am in control. I am in charge of something that is going to get me better.  But you're also doing that biofeedback. So that whole like, I don't know where my insides are, you're feeling your insides and we have mapped them and helped you to understand where your hands are. So now you're getting a much better accuracy, precision of awareness of where everything is inside and you're getting used to it. And the fact that it's soft and squishy and it moves, and then you are able to get that biofeedback and feel the movement. there's  speaker-1 (01:34:00.3) There's layers upon layers of kind of biological and psychological stuff that goes on. But really it's about, you know, I try to say we're just going to help it feel a bit better. Have a good massage.  speaker-0 (01:34:10.734) But it's interesting as well to think that you were talking there a bit about self-efficacy and also, well, to use a term that you didn't use, but I know that your PhD's been looking at this and this is a lot of what we've been describing in this episode, but that intraceptive awareness process as well, helping people to kind of update those sensory signals in a way that goes from really threatening to actually this is safer, more accurate and...  and feeds into that self-efficacy.  speaker-1 (01:34:41.228) Yeah, so there is a theory based on various data and neurophysiological studies that when we have chronic pain, we have an inaccurate body model, like a map of ourselves held within our brain and body schemas, a kind of moment to moment awareness of ourself, how bloated we are, what we feel like if we're engorged because we're about to have a period, those kind of feelings. And our data has shown that actually in pelvic pain, it's probably not.  it seems to be very, very accurate. So the 175 papers there are on sensorimotor testing of the pelvic region in pelvic pain show really heightened activity in pain evoking tests from a no-susceptive point of view, but also in tests that kind of measure how perceptive you are, how your muscles are functioning, that kind of stuff. So lots of different receptors. And also our data, it's one trial, it's quite a big trial, big survey, kind of we had seven  what was it, yeah, 711 participants showed that people don't report a lack of awareness. So when you have pelvic pain, you probably do have very, very precise awareness of acutely where everything is. And I think that's probably because it's biologically really important. It's intimate. It's inside us. We've got low-res signals inside, so we've got high resolution information outside that we're really precise about. So we don't necessarily want to improve that precision.  but what we want to do is improve what we found is that people are very disconnected. So they have a perception of disconnection that is expressed as an inability to make their pelvic floor work or to know what their pelvic floor is doing. So if it's tightening or if it's relaxing and that disconnect might actually be real, it might not be just a perception because we have data from Flavia Ignacio Antonio's group showing  increased pelvic floor tone in people with pain. So it might be a real thing, but it definitely feels like a disconnect. So from a physio point of view, we're trying to get them to be able to be in conscious control of those pelvic floor muscles, which as Elise has talked about, you know, the complexity of the parasympathetic and sympathetic activation of that region. We have an autonomic function of it. It's for support. It's also for continence. It's for structural. It's for intra-abdominal pressure when we move our arm up or if we want to lift or breathe.  speaker-1 (01:37:05.282) Public school is involved in everything, but we need to get more conscious control back of it, I think, in pain.  speaker-2 (01:37:11.276) And I think my physiotherapy colleagues do a very good job of helping people access that conscious control through the techniques they learn and also through the systemic access to those nerves with mind-body techniques that are proven.  speaker-1 (01:37:29.39) Can you have access to Syke  speaker-2 (01:37:31.95) Of course, yes. I wish I had more. I wish Sula were here.  speaker-0 (01:37:35.758) I'm meeting.  speaker-1 (01:37:36.11) I think that's often the crucial step, it? That we don't have enough access to psych, but when patients are really struggling with really difficult symptoms, the psych isn't there to make them feel better. The kind of psychological services are a really, really important part of improving on that disconnect and that control.  speaker-2 (01:37:59.154) I don't know if you have this in the UK. In the US, we have Psychology Today where people can search for a psychologist with a specialty in chronic pain. There's also Unfacing Pelvic Pain. I have listed a link to TAPME, which is the Toronto Academic Pain Medicine Institute. They've created a self-help strategy for patients. It's free because there's such a long wait list in Canada as well.  They created this incredible system that patients can access while they're waiting before they actually are with a clinician. And I think that's a fabulous resource. do also, when I see patients, you talked about people really sort of understanding what's happening in their body and the manual techniques you're using while educating them. I love to have patients watch while I perform a cystoscopy.  speaker-0 (01:38:37.368) Yeah.  speaker-1 (01:38:37.902) sounds amazing.  speaker-2 (01:38:55.822) And I love, I actually have my computer on a mobile desk in clinic. And so I'll turn my computer and show them their imaging so that they can see what's inside of them. And I find that can be very helpful. One thing that I noticed is, you know, when someone comes in for a cystoscopy or a urodynamics and I tell them it's normal, it's not always a positive reaction because they're hoping to find something. So I'm very careful to plant the next steps at that moment.  and to explain why it's good that it's normal, but it doesn't mean that, you know, they don't have X and will take the next steps to figure out why they're having the symptoms they're having.  speaker-1 (01:39:36.77) That's absolutely brilliant. mean, would, Sue and I were talking about this last week that there's some research out of South Australia at the moment that show in endometriosis patients and their level of uncertainty because of the health systems. And we were talking about this earlier about our uncertainty about being able to help these people. We really want to, but the greater our uncertainty, the more their uncertainty. But that one of their key findings was that people often, it reaches a peak when they go for their laparoscopy.  And if the lap comes back negative, that they haven't found endo, that they don't know what's going on and they feel like they're just going to be discharged. And that if we're able to say, okay, so we haven't found this, but that doesn't mean that your care stops, you're still in pain. That's a significant step that we can take.  speaker-2 (01:40:24.622) Can you imagine the panic in that moment of like, okay, everything looks great. Wash my hands of you. It's really something that should not happen to a patient. There should be multidisciplinary referral for next steps to access what people need.  speaker-1 (01:40:44.376) That's best case scenario from my point of view. When everything's been done and it's come back negative, fantastic. That means that we're working with chronic pain and we know what we're doing with chronic pain. So it's great news, if anything.  speaker-0 (01:40:56.238) Thank you so much for saying that because that is one of the elements that unfortunately just commonly happens. I think because of lack of healthcare access and provision, I mean, I know this is everywhere at the moment, particularly in the National Health Service, such long waiting times and everybody's under pressure. So there is this sense of, let's try and expel people from the healthcare system. So when a test comes back negative, it's...  you know, a relief perhaps for clinicians also of like, well, not on our waiting list anymore, off they go. and you know, it would be really great if that meant not on ours, but you know, we'll open up this different avenue, but unfortunately quite often that doesn't happen. the effect is that people think, okay, so this is just entirely my problem on my own. And like Judy was saying with that research on endometriosis for everyone, increased uncertainty is just so anxiety provoking and speaking to that sense of.  threat massively amplifies things and feels like, well, where do I go from here, which often tends to coincide with more symptoms as well.  speaker-2 (01:42:03.82) Yes, they're on a desert island. So we've actually spent the past two years creating a multidisciplinary storytelling interaction patients can have where they spend an hour inputting all of their symptoms and we guide through if someone has pain, for example,  speaker-0 (01:42:05.89) Yeah, yeah.  speaker-2 (01:42:29.026) guide them through all of the pain questions. And if they don't have pain, they don't get those questions. And then we are processing that information with guidelines based algorithms. And then on top of that, curating it a bit with AI. so that's just about to launch. idea is that people, because honestly, no physician can be expected.  speaker-0 (01:42:49.272) This sounds amazing, incredible.  speaker-2 (01:42:56.654) to be an expert in pelvic pain. It's too broad, right? But if you can tell your whole story in your own voice and then have that information processed according to guidelines and scored, and then have AI have a crack at it, it's really the best first step to medical care. And then you have that sort of  background through which to filter where all of the different providers fit in.  speaker-0 (01:43:28.084) that sounds so amazing. You'll have to keep us up to date. I'll, yeah, when the episode comes out, it depends on your timeline, but I'll update it if it's, after the fact, because that sounds truly, like really helpful to so many people.  speaker-2 (01:43:41.238) And for the physicians, I hope so.  speaker-1 (01:43:43.534) We've all got what's it called black spots where we don't see and I think those of us that spend time with our multidisciplinary colleagues and we're at conferences and societies and things which obviously Elise and I do quite a lot, we understand the role of each other and things like OT we haven't talked about them but they can be fantastic. I work with some Peds and local children with local children's home.  And we've got some fantastic OTs who do really interesting interventions for sensory issues around toileting, which are life changing. And if we can understand each other's role, we're going to be much quicker to point out different strategies and different directions to go. But also what I'm really looking forward to, and hopefully this will be within my lifetime, is that when we can start phenotyping down to the pairing of doxazosin with bladder retraining.  for this patient or we need to have a psych intervention and we need to have some OT strategies around their local area and that those things together will be better for this person. If we can get to that point, I'll be really excited. That's where, because that's the individualized medicine we're aiming for, isn't it? But we're just, we're not able to achieve it yet.  speaker-0 (01:45:03.374) But it sounds like so many exciting developments and so many overlapping areas that can be complementarily brought in together. So this is really exciting. And also just to say, even if you can't get access to that person or that treatment straight away, just even  knowing that there are choices and options and at some point access can make such a big difference to somebody even if there is a waiting list. yeah, there's a lot.  speaker-1 (01:45:38.454) I'd add to that as well, even if there are issues or problems that have been identified, the body is pretty good at coping with things that can calm down about in general, as long as we're not talking any red flags or any kind of serious, you know, detrimental neurology and things like that, which we leave the doctors to sort out. And in general, you know, we know that 50 % of the population at the age of 50 are walking around with slipped discs that don't have any symptoms of them. We know that  Arthritis is, it's about again age presenting prevalence. So it is about 20 % of 20 year olds who've got some form of arthritis, most of which, or degeneration of the joints, most of which won't notice, don't have any pain symptoms. People's bodies cope with things really well when they are moving, when they are active, when they are supported, they're in their communities, they're generally fit and healthy. Our bodies are really good at adapting.  Women have children. That itself is an incredible physiological experience and we adapt really well to all of the changes that can occur in a body, specifically in your continence mechanisms afterwards. So we're pretty good and resilient as humans. But pelvic pain cannot change.  speaker-2 (01:46:55.724) Yeah, and when something's truly wrong and needs to be addressed surgically or medically, the body is pretty good at healing afterwards too. One thing that I think is really helpful when people have to wait six months for an appointment, if they get very good pre-education, then they can start doing things on their own. Like if somebody hears some of your strategies, Julie, they'll be able to try them on their own.  speaker-1 (01:47:18.446) Yeah, and hopefully this is something that certainly in the NHS has been rolled out everywhere. This kind of pre-hab idea, lot of people are doing their own kind of videos and stuff. was a paper in Australia, there were a couple of papers on LARS, which is a kind of an anal pain related to kind of post cancer treatment. And what they found again, that if they implemented this really simple pelvic health physio pre-hab before they had their lower anal resection surgery.  that the rate of pain significantly dropped off and people improved quickly when they had access to information. So it's brilliant that you've got a YouTube channel, Elise, so we can put everyone to that to get the truly evidence-based information.  speaker-2 (01:48:00.778) Absolutely. I'll put up the UTI video soon.  speaker-0 (01:48:05.198) yeah, great. That'd be so great. Thank you both so much. This episode has been like very, very informative and so, so rich in terms of depth and breadth of just understanding, you know, the complexities and the overlaps in pelvic experiences and bladder issues. And I really appreciate you both making the time. And I'm excited to put the various links and signposting together for this episode as well.  speaker-1 (01:48:31.062) Thanks for having us. It was nice to meet you, Elise, as well.  speaker-2 (01:48:33.686) Yes, I look forward to seeing both of you again.  speaker-0 (01:48:36.438) Yes, for sure. Thanks so much. Take care.  speaker-0 (01:48:43.584) Learned something today? Your brain hasn't finished with it yet. Research shows revisiting new information is all it takes for your brain to start connecting the dots on its own. So subscribe, listen again and let it do its thing. Thanks again to our partners at Convetech Continence Care. Don't forget to check out the resources and references linked in the show notes. This podcast was produced by Maya Sounds & Music.