(00:00.878) Okay, exciting. I'm so excited to have you both here to talk about your respective research and insights from different backgrounds to talk about this topic. just to give a bit of insight, so far on the podcast, we've had neurologists, neuro-urologists, physiotherapists talking about the context of the brain bladder, brain pelvis.  connection, we've got quite specific into the physiology of it, which is truly fascinating. And one thing that I was hoping that we could explore today more specifically is the role of cognitive processing and the role that our thinking plays in these bladder and pelvic experiences. So I'm so glad to have you both here to discuss exactly that. I'm going to ask you to introduce yourself, maybe starting with Laura.  Yes, it's nice to be on this podcast. Thanks for having me. I am a clinical health and rehabilitation psychologist. And what that means is I've done a lot of my clinical training, being my masters and PhD, looking at how women cope with pelvic pain and more specifically with bladder pain and interstitial cystitis. And then I worked in the hospital system for a while building programs on those kinds of factors.  And right now I'm in clinical practice where I run all sorts of interdisciplinary programs and groups.  Yeah, fantastic to have you here. And I was just saying before we clicked record, I've cited lots of Laura's research in various research bids that I've put into to try and get funding for psychological intervention for urogynecological issues to yet to be funded, of course. And Melissa, it's wonderful to have you here.  Melissa Audio Fix + Grade (01:42.702) We know the feeling. Yeah, thanks so much for having me. So I'm the CEO and founder of LiveUTI Free, which is a patient research and advocacy organization. I'm also one of the founding members of the Alliance for Patient Centered UTI Research. And I'm a PhD researcher at the University of Reading in the UK. But before all of that, I experienced a period of chronic UTI that lasted for about five years and then  was okay for about five years, then had endometriosis surgery, which resulted in a catheter-associated UTI, and I've had a really prolonged recovery period. So I have that patient side of things, but my team does a lot of health psychology research, and we're really working to better expand on the patient experience so it can be taken into account in clinical practice.  Yeah, thank you, Melissa. It's so valuable to have that lived experience as well. people listening will already be familiar that I have my own experience with UTIs and mysterious kind of bladder symptoms. And I think it does add something to that experience of knowing the ins and outs of like the daily toll of having symptoms and what that means and how you change your life. it's wonderful to have you both here to...  explore this. So one of the things that I wanted to start off with is just when we explore the role of thoughts and thinking in the experience of bladder and pelvic issues. One of the things I'm really acutely aware of is that this is an experience if you have bladder and pelvic issues, this is often an experience where you get a lot of pushback on how you  how you're experiencing things. So you go to the doctor and you're telling them, this is what's going on for me. And you might get a lot of dismissal, let's say, lack of understanding, which then can make you question your own experience. And from that place, when we start to talk about the role of thoughts and thinking, I know that for some people that can feel incredibly dismissive and stigmatizing in itself. So...  Sula Audio Fix + Grade (03:54.548) Perhaps just to acknowledge that first of all, Melissa, I'd love to hear your thoughts about that. And I know you've done some research on those medical experiences.  We definitely have, but it's something that comes up all the time, this kind of perception that health psychology research could be reinforcing the notion that recurrent and chronic ETI is all in your head. And we're really conscious of that when we do this work, because what we're looking at is how people psychologically respond to this very real physical condition. So we know the infections are real, the symptoms are real, and the pain is real. But we want to find out, given that reality, how can we help people cope better?  with this physical burden and the psychological burden on top of that, that comes from the medical gaslighting and the dismissal not being believed. So it's a really tricky line to walk, I think, but we're always having these conversations with patients in the community and trying to gather feedback from them about how we should do this research as well. And that gives us that element of patient support before we start talking about patients instead of with patients and learning from patients. So that's become central to everything that we do.  It's really fascinating because when you are having those conversations, what are the sorts of things that they're saying make it feel less stigmatising or endorsing of this idea that it's all in your head?  It really helps to understand that other people are going through this experience. And that's why we built this community in the first place. When I went through the experience of Chronic ETI, I just felt like there was nobody going through this and it was more that people weren't talking about it. So I decided I needed to build a platform that brought all the information together because that was a place that I could have felt validated much earlier in my journey. But instead I had the same experience over and over and I was traveling.  Melissa Audio Fix + Grade (05:37.342) world at that time. So I had this identical experience in multiple countries where a doctor would say, I just don't know how to help you. And then when I started to interview other women and find out that they had similar experiences, I became angry for one thing, but also realized that it was never in my head. And the problem was the system. And I wanted to help people to get to that point faster so they could put that aside and start focusing on how to find better care instead of blaming themselves or internalizing that.  narrative of it being in their head.  Yeah. And I'm so grateful to have a platform like that. Because I remember when I was going through UTIs, certainly there wasn't, there was like the depth of some random forum that you would find at the back end of the internet, which made it feel even more scary, right? It reinforces the idea that you're there on your own. So it's wonderful to have all of the resources that you've collated in that community. And it's really interesting what you said there about the role of validation.  I'm so sorry.  Mm-hmm.  Sula Audio Fix + Grade (06:37.454) So we're in the process of collating qualitative interviews that actually you were involved in helping us recruit for this study. Hopefully the paper will be submitted by the time this podcast comes out. But one of the things that really struck us, there was lots of different themes and we were really wanting to understand, like you say, what's the psychological element of impact, sorry, of having this experience, this physical experience.  And there was lots of people, we were actually specifically talking to women, there was lots of women saying it has a huge impact because it's awful. And the medical gas lighting and dismissal obviously adds to that. And so we can see a lot of interconnection there. But there was a subsection of people that seemed to find it really upsetting and had a lot of resistance towards it to the point that, you know, our questions were super open. weren't...  we made sure that they weren't leading, but they would say, I think it's a bad thing that you're trying to paint this as anxiety. Obviously we wanted to clarify that's not at all what we wanted to do and that's not what we're doing. so readily the brain went there as like this, you're again telling me it's all in your head and that there is a real issue there with if...  Mm-hmm.  Sula Audio Fix + Grade (07:59.139) this has anything to do with my thoughts or thinking, it means it's not a real experience and it's all psychological and that kind of dichotomy. Laura, to ask you a little bit, I know you work a lot with the neurobiology and neuroscience of helping people understand thinking and the role that has in illness. I'd love to hear what your thoughts are.  Mm-hmm.  Laura (08:20.493) Absolutely. I think that's a really good point in terms of starting to understand that thoughts aren't these like fluffy little things just come about. They're an integral part of our neurobiology and how our nervous system works. And so when you start to realize that our thoughts actually give us vital information in terms of our environment and our survival and how we adapt to being alive in this world, we can start to recognize that  Certain thoughts can definitely help our nervous system to be more hypervigilant because that's going to help us maybe get the care we need, reach out to medical professionals and get the treatment that's necessary versus some of the thoughts that can help to down regulate that system that really leads to some of these safety cues that maybe decreases the amount of pain signals that are being sent out and can make.  experience a lot more tolerable so you're able to cope in more effective and adaptive ways.  Yeah, absolutely. And I try and explain that to people as well, you know, just because they're your thoughts also doesn't mean that they're your fault. It makes total sense that you would have very threatened thoughts when you've had very threatened experiences. So, you know, I'd like to explore with you both actually the role of memories of traumatic symptom experiences and how that actually influences things. But we'll come to that in a moment. But I think  just going back to that dichotomy about how if it's something to do with my psychology and the way that I'm thinking, then it's my A, it's my fault. And B, it means that you're saying it's all to do with that and nothing to do with what's going on biologically. So I guess, Melissa, just to kind of acknowledge the role of biology and the experience of things like urinary tract infections and even, you know, broader pelvic pain experiences, would you mind  Sula Audio Fix + Grade (10:19.192) talking a bit about the difficulties that people do face when it comes to testing for UTIs and things like that.  So much of the conversation centers around testing and the problems with that. And we often see that people's first response is anger. And it should be, it's really dehumanizing to go to the doctor with symptoms, just to be told this one single test negates your whole experience. And that is a really difficult place to start. And it also just breaks this trust that a lot of people think they have with the healthcare system. And that's just no longer there. And where do you go from that? And so that often moves on then to some kind of...  Yeah.  Melissa Audio Fix + Grade (10:56.564) internalized thoughts and disbeliefs because alongside that narrative of the test is somehow correct and it overrides your experience. means that whatever you're talking about either doesn't exist or you're just wrong about it. So if people then sometimes can start to move into those thoughts of self-blame or doubt.  And it can also depend on how much research a patient has done, whether they know that testing is flawed, whether they know there are problems with treatment. Most patients when they first feel that invalidation, they haven't done that kind of research because why should they have to? They shouldn't have to be prepared to go to a doctor to tell them what they think is wrong with them. And here's the problems with testing and here are the problems with treatment. So it's a really vicious cycle. just end up, if you kind of just have the rug pulled out from underneath you, you think you should be able to trust the doctor. Suddenly you're told everything you're thinking about is wrong.  Not only that, but your symptoms don't matter at all. The test is the only thing that matters and you should just go home in the same situation. So it's, it's always at the center of everything we talk about with our resources. You have to understand that medical testing doesn't describe your symptoms. And if a doctor negates your experience because of that test.  Mm.  Melissa Audio Fix + Grade (12:04.342) That's not your fault, but it is very, very difficult when you've been told the same thing by multiple doctors to not start to think about that. And that's when it can be really important to find community so that you can see that it's not just you that this is happening to.  Yeah, absolutely. Because what a confusing thing to be told. Yes, you're having this symptom experience, but really that's got nothing to do with anything going on because this particular test without the knowledge of it necessarily being flawed says so. Like you were reflecting there, Melissa, that can make us feel like, well, I can't trust myself, but I also can't trust that I'm going to get this support, which is truly scary.  I'd love to hear your thoughts Laura and perhaps your research as well about what impact that has on our mental wellbeing and coping but also perhaps physically.  Yeah, and I think you brought up some really good points in the sense that when we go to healthcare and clinicians to try to get help, what's really tricky is what's often communicated is either I'm right and you're wrong. And what can be challenging about that is the fact that a lot of times with a lot of these visceral pain conditions, we just don't know, right? Like we can't...  visibly see it. You know, there's not obvious lesions or blood necessarily, and that can be really tricky. And so I think it would be incredibly different if during healthcare appointments, some of our clinicians or physicians would communicate things like, this test doesn't show X, Y, and Z. However, the reality is we really don't know. Let's ask some more.  Laura (13:45.517) Let's be curious. Let's see bigger picture what might be going on, know, systemically nervous system in your life that could be related to what might be happening for you. And I think that relates to some of my research when we looked at factors of we did a really nice modeling study way back when with restructural occasion modeling. And we tried to understand, you know, with women who had conditions like interstitial cystitis and bladder pain syndrome.  Which of the women were able to experience symptoms but somehow go on to be thriving and have good quality of life versus which of the women really struggled and, you know, were not able to cope in ways that they could function day to day. And one of the big factors that we noticed was a mediator between all of these variables was emotion regulation.  And so the ability to experience distress, experience symptoms, but somehow have some cognitive flexibility and capacity to, you know, find ways to cope with it in their day-to-day life. And that's exactly why mental health support and psychology and health psychology and everything that we're talking about is such a vital and important piece of the treatment of care of these kinds of conditions, because it really does make or break.  Laura (15:10.283) the ability for women to not just go to those kinds of appointments and walk away feeling that helplessness and hopelessness and then kind of just walk away and that degrades over time, but be able to take those pieces of information and then continue seeking support and go out to figure out how to function in their everyday life.  Yeah, it's something that you said at the beginning there as well about the healthcare consultation. This, I can't remember who was talking about this already on the podcast, but was saying there would be such a difference in the patient experience and sense of threat if it was, okay, this test came back negative. Let's see what other tests might help us shed more light on this or okay.  well, this gives us this bit of information, but the story doesn't end there. You know, we'll continue to support and explore with you. Whereas what a lot of people experience, I suppose, is, so that's it. Off you go.  That's it and your discharge, right? So not only did you wait like 18 months potentially to see this specialist while your symptoms are progressing and worsening and you're not able to find anything that's working, but then finally get there, you have a piece of hope and it's immediately shut down.  And yeah.  Sula Audio Fix + Grade (16:33.006) Yeah, yeah. And the other thing that stood out to me with what you were saying about the role of emotional regulation, I guess one thing that might be super helpful for people to emotionally regulate when the threat is so high of, okay, so now I'm discharged and I'm not going to be helped by the healthcare system or I'm really going to have to fight, I suppose it comes back to what you were talking a little bit about, Melissa, in terms of that community and...  having access to somewhere that could give you some more information. I what role have you seen that play in how people relate to their experience?  These experiences are so isolating and we know that people feel so alone in that because one of the first things we often hear when they find our community is it's the first time they don't feel alone. And this is probably the most quoted thing that we've heard over the last eight years. And so it is really important to find people and resources and worksheets and things that can just help you to organize your thoughts and validate your own experience. Because up until that point, you're just left blowing in the wind. Like you said, Laura, you'll just be told.  Mmm.  Melissa Audio Fix + Grade (17:40.125) test is negative, goodbye. And then what are you supposed to do? You are maybe expecting a referral or more testing or some kind of advice, but you are literally given nothing and you're left to your own devices. And then you turn to the internet and that's why we built Libby Shire Free there, because we wanted to find these people. But one thing I would say is that it's even more shocking because this problem is huge. We have up to a million people on our site every year, people looking for this information and the biggest article  for traffic on our site is one that's titled, my UTI test was negative despite my symptoms. That is how almost everybody finds us. And yet we still haven't found a way to fix this problem. So patients are just getting more and more frustrated. They feel like they know this and they've known this for a long time. And still doctors are just unaware of the issue. And so it's frustration upon frustration for a lot of patients.  Yeah, it's hard to reconcile that isn't there, you know, when there's a glaring problem that we know has been around for a long time and yet systems are slow to change and policies, yeah, just kind of keep things where they are so patients keep having these issues. So, I mean, to acknowledge that, that the major issue with systems, systems not providing the care, the continuity of care and also the kind of up to date.  practices and diagnostics often can cause huge issues then for what you said earlier actually, Melissa, about that maybe it's the first time then the trust with the healthcare system is broken so you go from being like I'll be helped to I won't be helped which is incredibly scary and I guess that brings me to the next bit that I'd love to explore with you both which is about this  Threat prediction then, when you've gone through this and you've suddenly had your reality changed of, I'll be helped, I won't be helped, that makes everything else much more potentially threatening and scary. So when you have a twinge of a symptom or you've been in remission and then you start to get a flare, that can really make things much more scary. I'd love to hear from you Laura, bit about what kind of impact does that have on how the body then responds?  Laura (19:58.111) It's huge. And what you're describing is essentially the neurobiology of trauma. And so, you know, our body is really, really well trained to hold on to memories that are negative and maybe maladaptive for our survival, more so than positive ones or things that are joyful or leisure. And that's for a reason, right? It doesn't make sense for us to remember our favorite flavor of donut, warm or stress, but it really is important for us to remember  you know, those times when there was danger and threat in our environment. And so every time you have those kinds of experiences, what that does is it creates, you know, hypersensitivity and more hypervigilance within your body. And so your brain, even when it experiences that twinge or that symptom, it goes back and takes you to that threatening or dangerous time.  your brain doesn't know that it's in the present moment, it's fine, it's okay. It takes you right back to those very scary times of invalidation. And a lot of times when you start to do these kinds of psychological treatments and therapy with patients and they start to experience symptoms and you ask them, do you have a memory or an image? When did you first experience that? Because the body has those memories and they're like, they're taken back to sitting in that waiting room or waiting for the results or  kind of dissociating or flying above their body as somebody is talking at them, you know, and then leaves the room. And so it really has so much to do with that trauma response, both in our brain and our body.  It's so interesting you saying that because what I've what I find really interesting is particularly so I see, you know, people with a lot of different physical presentations, but particularly bowel, bladder, and then a big subsection of people with recurrent UTIs and bladder pain syndrome. And one of the things that I've found really, really fascinating is when we have identified that that  Sula Audio Fix + Grade (22:05.954) vigilance that comes up and the panic and the emotional dysregulation that twinges when it's not a full blown flare, but it feels like it's imminently going to be. And we've done a bit of this technique in what is called eye movement desensitization reprocessing, so EMDR therapy, where we kind of float back to understand when was the first time or a time that feels related to this that you felt this.  For lots of people, there's memories specifically around the symptom experience, but actually what gets highlighted as the biggest threat, which I find so fascinating and so related to what we've been talking about, is this sense of, won't be helped. It's not just, I've got this awful symptom and it feels awful. It's, I've got this and I'm alone with it. And that's often the thing that we're trying to help update, but of course it's very difficult in the context of systemic issues.  Melissa, when you're kind of looking at what comes up in your community, what is the impact? know, how do people navigate these, well, very real threats and the thought process that come with them?  It's really difficult and it's different for everybody, but we do see it play out in a couple of common ways. One is something that you and I spoke about once, which is the safety behaviors that people develop. So that might be a routine that is specific hygiene practices or specific supplement protocols or dietary restrictions. And they kind of do these behaviors because they feel like if they don't, the symptoms might come back. But at some point it becomes hard to distinguish.  whether this routine is actually preventing infections or it's just providing like mentally soothing effects. But that's also a benefit. sometimes just observing patterns helps people to feel more calm about it, even if they know they're not influencing the outcomes. But then for other people, the tracking becomes a burden itself. So they need to let it go. And that's the first time that they feel more free and calm. And so it's, it's just really different for every person. And it changes along the journey to I tracked everything the first time that is what helped me overcome.  Melissa Audio Fix + Grade (24:15.421) chronic UTI because I did find a way that fixed the problem for me. The second time I tried to track it, nothing was changing. I was tracking everything. I would add more things every day. And then at some point I actually was doing EMDR and the therapist said to me, why don't you just stop tracking? And I did. And then I just felt so free and it wasn't working. It wasn't helping me this time. So sometimes you even have to revisit your own approaches. Even if they were helping at one point, they might not be helping now. And  you  Mmm.  Melissa Audio Fix + Grade (24:44.875) We see the patient journey from the beginning to the end for a lot of people, they do reach a point where they're not having symptoms anymore, but it changes so much and people can have these experiences for decades. And you always have to think about what serves you in these situations and try not to listen to what other people are doing if it's not going to be something that's meaningful in your life or that suits your values.  Absolutely.  just wanted to chime in. think that's so helpful what you just said, Melissa, because a lot of the things that we're learning from our patients is there's so much isolation and then people turn to dark corners of the internet. so, you know, a lot of times with a lot of these support groups and forums, like people aren't, you know, living their best life and then logging onto the support group. You know, they're having a really hard time and it's a place where they can unload, invent and trauma dump. And so it's really tricky.  Mm-hmm.  appreciate so much of what you created, Melissa, and we've done a similar thing with our program Endometriosis360, to try to create a community and resources that are scientific, empirically validated, that are proactive, that are actually going to create that kind of, you know, social support that's going to be helpful and lift people up in these kind of times because there is so much hopelessness and helplessness that exists within the community for sure.  Melissa Audio Fix + Grade (25:54.048) Yes.  Sula Audio Fix + Grade (26:08.61) Yeah, absolutely. thinking about that helplessness and the way that that then informs our brain of what comes next. So essentially the prediction of threat being super likely and often that's realistic, but then it can, we know, go much further than what is likely to be realistic.  especially just understanding it from, I think, understanding it from that trauma neurobiology framework can be super helpful because it really, again, destigmatizes. This is not a hypochondriac response. This is like a natural response that your brain is going to go into because you've been in such a bad place before and you've had such troubling experiences before. So I want to, on that note then, just...  I'm very curious about what you both think about the term catastrophizing, just before we even talk about what we find from that research, but just the term.  I'll try them in here. I think the term has just been so demonized. It can be an ugly word, but I think the roots of what it is is so important. So we can call it whatever we want to call it, but essentially it is fear of pain. And that is a totally human, normal adaptive response. know, nobody wants to experience pain. Nobody wants to be uncomfortable.  Yeah.  Melissa Audio Fix + Grade (27:12.897) Mm-hmm.  Laura (27:38.881) And then the more and more it comes up, particularly when it's unpredictable, we start to become hypervigilant and oversensitized. And that impacts what we do, how we do it. And like Melissa was talking about, those safety behaviors, like we're just trying to keep ourselves safe. And it makes a lot of sense. So I don't know about the verbiage of the word, but I think the construct is so vital and important to this work.  Yeah, I'm going to ask you about that in a moment, but yeah, Melissa, I'd love to hear your thoughts.  I would say I've always been uncomfortable with the term. It really implies that someone is overreacting. And for people with UTI who are constantly told in medical appointments that they're imagining things or they're overreacting, the term catastrophizing is just a really poor choice. I also think in research, it has its applications. We do a lot of work around that space, but when you're...  experiences something like UTI, it's not unrealistic that that could lead to a kidney infection or sepsis. And when you're peeing blood, it is actually serious. You could die. Like it's not overreacting, but there's also shared community trauma. Like you were saying, Laura, this community element is really important. And we try to advise people to just use the communities as they serve you and step back if they're not, if they're impacting your mental health in a negative way, you should step back, but  You go into these communities and you see the worst case scenarios. So you're not imagining a worst case scenario that could never happen when you're so-called catastrophizing. You're imagining or thinking about things you've seen happen to other people. Or sometimes for people they have experienced them before, they're worried about them happening again. So you have this hypervigilance, but it is so justified.  Melissa Audio Fix + Grade (29:23.613) that using terms like catastrophizing is really unhelpful and I don't think that we should ever use them in an interface with patients and I understand that these terms are accepted in research, we have to use them, researchers have to know what you're talking about, but it feels so inappropriate when you're talking to patients to even imply that anything that they're doing has a hint of a reaction about it.  Yeah, I totally agree.  I really agree. Yeah. It's a very interesting thing, the terminology, you know, in research, there is the catastrophizing scale, which, like Laura, you translated perfectly is essentially a lot of items that measure the degree of fear of pain, which is totally natural. It's not stating that these things are an overreaction. It's just these are the sorts of things that people commonly experience.  So it's a very helpful measure to understand is that what's coming up for somebody. However, the connotations of that word that's been used for the scale is really unfortunate because it is associated with overreaction and being a hyperchondriac, which of course in the context of these sorts of conditions is particularly problematic. So I agree not using those terms with patients, but I think it can get confusing because now the...  the bridge between research and public access is less, you know, with the internet and with chat GBT and AI and things like that. So it can also further the problem, I suppose, of how patients feel like they're being talked about when perhaps there isn't quite that translation of the term. So I would just petition to like change the name of that scale to fear of things.  Melissa Audio Fix + Grade (31:02.701) I'll sign the petition.  No, I know. And that's the tricky thing. Like we've had so many discussions, you know, when I was a grad student back in the lab, like, what do we do with this term? Like, nobody wanted to say the words at academic conferences. Nobody wanted, like, it's not something that's clinically appropriate, bedside manner, exactly what we're talking about. But if we change the term, it's almost like we throw out like decades of like super important research.  Mm-hmm.  Bye bye.  Laura (31:29.931) And so I do think that there has to be some collaboration with the community about what to do with it because it's an important as a construct, but how it's being translated and disseminated within healthcare is often wildly inappropriate and super invalidating, further complicating and worsening the issue.  Yeah.  Sula Audio Fix + Grade (31:50.264) But if we do understand when we're talking about, we'll try not to use the term catastrophizing, but we'll use it interchangeably in this discussion and try and keep with fear of pain, but as measured by scales, the pain catastrophizing scale and others like it. Laura, you've done some really interesting research showing that this, you know, cognitively represented fear of pain actually then can physically have an impact on pain experiences. I'd love you to talk a bit about that.  Absolutely. So the pinked hashtrap rising scale, we'll call it the PCS. Essentially, why it's so often used is because it's such a robust predictor. It literally is a very high predictor of almost every metric in terms of research when you look at it. So it predicts how people cope. It predicts longitudinal changes. It predicts how people do in terms of treatments and the readiness for change.  Mm-hmm.  Laura (32:50.315) And so, I think the more important thing is not necessarily coming back to the fact that it's catastrophizing or putting it back to the patient, but going back to that biology, this makes a lot of sense, it's a normal human experience for the patients that have more hypervigilance and fear. What else might be going on systemically in their environments?  in their relationships and their mental well-being, in their physical medical presentations, and how can we help support them? And I think it really leads to a bigger discussion in terms of if those metrics are elevated, maybe we need to help support more rather than the healthcare system wants to put up their hands and support less.  Yeah, yeah, absolutely. And can I ask you a bit specifically, because I found this really interesting, a paper that you did about, I think it was pain catastrophizing, if I've gotten it right, could predict later pain. It was like a chicken and egg, you know, is it pain that leads to more catastrophizing, does catastrophizing leads to more pain? Obviously, it makes sense that when you experience pain, as we've been talking about, that's going to inform.  Yeah.  Sula Audio Fix + Grade (34:02.678) our cognitive representations, but you also did some research to show that longitudinally it can go, it can be that the more our brains encoded this fear of pain and has these predictions that can then inform more physical pain or create more physical pain. Is that right?  It's definitely the chicken or the egg. And when we think of why chronic visceral pain conditions exist and start to perpetuate, it comes down to that, the central sensitization and all of that hypersensitization and sensitivity over time. And so is it that there's this organic process that's worsening and then of course the normal person is  quite distressed by it, or is what we talked about at the beginning, you know, our thoughts and our emotions are part of our nervous system and the neurobiology of pain, and then further leading to more inflammation and sensitization in our systems over time. So we don't know. And this comes back to the problem and why so much research is needed and why this needs to be more and more topics of our conversations.  It's the fact that we need to understand this process biologically so much better than we really do. We just don't have the information to be able to say for certain.  Yeah, well, something that we had, Julie Bond, who's an amazing pelvic health physio and does a lot of work in this area, but she said something that really resonated. She's like, we can all relate to when we're feeling tense and stress and our shoulders are like up here. We're like, my God. And she's like, you know, a lot of us actually have that kind of reaction going on in our pelvic floor. So it's all kind of.  Sula Audio Fix + Grade (35:55.042) bunched up and shook up like our shoulders, but unlike our shoulders, we can feel much more agency and like letting them relax. When I say that to people, you can see their shoulders like naturally subside, but our ability to do that with our pelvic floor is much harder because the visceral kind of nerves around there, it's not as HD focus as say, our somatic. And so then it makes sense to me as well. The more...  scary thoughts and cognitive processes we've got about what's going on in these regions, the more that would just translate to that kind of tension there as well. And because of the nature of that interconnection of the nerves, it makes sense that that would also either sustain pain or amplify it, you know, and feed back in. And again, just to acknowledge that I'm not saying that is the only thing that keeps the pain going. There's other biology biology going on, but definitely part of the equation.  Melissa, wanted to ask you as well about your, well, first of all, did you have any thoughts on any of that or anything that you were thinking as we were exploring?  Well, it's something that comes up a lot in the community too. It's about this differentiation. How do you even tell where the pain is coming from? Is one thing exacerbating another? It's an endless cycle, but it all comes back to that fear of not being helped. How can you even begin to answer these questions without help from somebody who can actually investigate that for you?  Absolutely. In fact, on that point of fear of being helped, think as well, Laura, sorry, I've geeked out on your research big time. Melissa, you're going to get some questions about those as well. I was also reading one of your papers, which was specifically around helplessness and the impact that that can have on outcomes. Would you mind sharing a bit about that?  Laura (37:27.161) And that makes me happy.  Laura (37:43.627) Yeah, I think it comes back to so much of what we're talking about here when we think about what helplessness and that construct really is. And so by feeling that cognitive appraisal of not having anybody help you, and it's not just the system, but the time, you know, maybe it's been years that you finally get to your appointment and you're waiting for, you know, the system to give you diagnosis and treatment.  You also have to imagine that the entire social sphere of that individual has also probably invalidated or dismissed those symptoms in that person as well. they're not able to have the roles, whether that's a parent or a friend or a coworker or anything of that in their life. The relationships are awful.  and really struggling because people don't really understand what it's like to live in that body and have those symptoms. Like nothing can prepare you for that lived experience of having those kind of things. You really just can't understand. And so, you know, by the time you get to those appointments, you're often experiencing quite a bit of helplessness. And that is predictive of the fact that by that time, if you're not getting the supports that you need, you may not be able  to cope in the ways that are going to be helpful for you in your life. You're temporarily doing things like safety behaviors and just trying to make things good in the moment. But what that does is that really  spirals and cycles that distress anxiety and invalidation over time because you're not getting the opportunity to get the real help and support that you need, which leads to more helplessness over time longitudinally.  Sula Audio Fix + Grade (39:33.42) Yeah, so an example of that is one that I commonly see of if you've been invalidated by the healthcare system and you've had two, three appointments with your GP that's like giving you the test, there's, I mean, we'll put you on a waiting list, but there's nothing else you can do. Again, it makes complete sense that you're like, well, I'm not going back to my GP. What's the point? And whilst on one hand it makes complete sense, but it kind of perpetuate a cycle in the sense that then there isn't an opportunity to  potentially get more help within the healthcare system as you feel like it's important to disengage. We need the opportunities to reengage at some point, but it's really hard to feel safe to do that, to then find the practitioner or the door that opens within the healthcare system. Melissa, can I ask you a bit about you've created the recurrent urinary tract infection illness process model, which I think touches on some of these things of  coping and the appraisals and outcomes in the experience of UTIs.  We actually had similar findings to what you were mentioning earlier, Laura, about your pelvic pain work. So we created the recurrent UTI illness process model so that we could understand how people living with recurrent urinary tract infection experience this physical condition psychologically. And what we found was that your perceived health status has a direct effect on your psychological wellbeing, which seems kind of obvious, but the key finding was that your ability to cope plays a huge mediating role in that relationship.  And perceived health status is not something, it's a subjective self assessment of your health status. It's not something a doctor tells you, it's not what a test says. It's about how you perceive your health status. And that in itself is impacted by other things. It could be impacted by your household income or your age or your life experiences, your overall health. And so it's different for everyone. You could have the same amount of UTI episodes, the same results on a test and completely different perceived health status. So these relationships are really important and it shows us  Melissa Audio Fix + Grade (41:36.689) roadmap for how we can actually start to try to build interventions to help people build resilience and coping strategies. Another thing that we found in the study was that younger people are less likely to have strong coping strategies, and those with a lower household income were less likely to report a high perceived health status. So there's lots of nuance in these relationships that we really need to look at when we're trying to build psychological support interventions for patients living with recurrent UTI.  And I'm really interested about your work too, Laura, because it seems like you saw the same kinds of patterns and that a lot of work could be done in this space.  And I think that leads to some of the work that we're doing now. We co-founded this Endometriosis 360 program and we're able to pick up some of the pieces from where the healthcare system may not be able to support. And I think we have to fully acknowledge that these are the kind of conditions that are really complex and complex conditions that have multi-system involvement really need an interdisciplinary approach.  Mm-hmm.  Laura (42:41.694) And it's not gonna be one practitioner or one food or one exercise or practice. It's gonna be all of those things together that really makes a difference in a person's life. And I think that's part of the systems that we have to build and re-imagining and thinking what healthcare is, particularly when conditions are complex.  Yeah, this seems to be a theme coming up, you know, unsurprisingly that interdisciplinary or multidisciplinary input is so important, especially in the I mean, I think for all health conditions, but especially in the context of these pelvic and urologic conditions, because they tend to span systems. Just before we explore that a little bit more as well, and some of the  the roots that people might go down to look after themselves if they're experiencing these things. Melissa, just in terms of that perceived health status, could you give us like an idea of like, yeah, how that's measured or what, yeah, how one might perceive their health in a way that's positive and seems to be associated with better outcomes and ones that are more tricky.  So we scored the perceived health status on a scale and it really was just a single scale so people could choose their perceived status. And it's amazing this kind of pattern that you see where, like I said, people could have a hundred UTI episodes and still perceive their health as 80 out of a hundred because the rest of what's going on for them is not so bad or they have really high coping skills and it makes it really complex relationship between those factors.  And I would say, like, if I think about these things for myself too, if I had to score my overall health, my UTIs at one point in my life were affecting me every minute of the day. And I would still say my perceived health status is like 95, because I'm pretty great in every other way, except this one huge thing. And it's a totally different experience for each individual. And it's always fascinating to see the ways that people answer these questions and how the different elements of their own experience impact those scores.  Sula Audio Fix + Grade (44:41.154) Mm-hmm.  Sula Audio Fix + Grade (44:53.472) Yeah, that's really interesting, isn't it? The psychology of scaling your own health status when something really bad is going on with your health, but you still score it more highly, higher. Yeah, whatever the correct grammar is there. And just to touch on that role of, think you used that word.  Eva.  Sula Audio Fix + Grade (45:17.41) resilience, what are the sorts of factors, I'm curious to hear from you both, what are the sorts of factors that you've observed in your research or perhaps just in the community that seem to help people maintain that resilience when things are really difficult?  I can talk about how we measured resilience of it in the studies. So we measured resilience based on two factors. One was the ability to bounce back from adversity, which is really important when you have a recurrent illness. And the other was pain catastrophizing, which we've been talking about. the higher the pain, the higher the resilience and the lower the pain catastrophizing, the better people would cope. And that would translate to less depression and anxiety. So you have all these elements around that too. And that would be despite dealing with recurrent infections.  Yeah, great.  Melissa Audio Fix + Grade (46:03.691) I don't know if you saw the same in your work, Laura.  Definitely the same. And it's interesting because I've kind of taken a little bit of a step back from the academic piece and I've really dove into the clinical side. And so to see what those metrics actually look like clinically, working with patients in groups every day, it's the same sort of factors. And so I think what really builds resiliency is a lot of what we're talking about too. It's your village, your community. So we notice that when patients are socially well-supported,  They tend to bounce back a lot more quickly when they have resources in their life to be able to cope and seek all sorts of different disciplines of hair. And then, I mean, people are just so interesting to look at their psychological makeup and what makes somebody bounce back versus not. And it comes back to factors like emotion regulation and cognitive flexibility. So having the flexibility to experience something reinterpreted and keep moving forward.  to regulate high distress emotions and know how to cope with it and how trauma, previous trauma in somebody's life fits into that is such a huge piece as well. Particularly if somebody has experienced trauma and they've processed and worked through a lot of that, it almost makes them even more resistant, resilient to be able to cope with further hardships and difficulties that they face in the future and throughout their life.  And kind of the flip side of that is, I think you mentioned before we started this podcast, that factor of perfectionism. So sometimes if people have not had much hardship or difficulties throughout their life, and this is kind of like the first thing that's ever come up for them, and they're super highly functional, and they've always been the top of their class.  Sula Audio Fix + Grade (47:43.342) Mm.  Laura (47:59.032) head of this, head of that, then something like this can really topple them because it's such a big thing to be able to cope with in their life and you almost don't even know where to start. So I think there's so many different angles and that's what makes people so fascinating. Their psychological makeups, what is real resiliency and what does that look like? And it's just so different from so many different people.  Yeah, it's really interesting to think about that perfectionism element because similar to the I will be helped, I won't be helped realization, which can be really, now I can't stop saying the word catastrophic, terrifying. It's a similar sort of thing, know, when it feels like you can just count on life and you're doing life well and you know, things.  Yeah, it's to avoid.  Sula Audio Fix + Grade (48:51.188) know, the struggles, you feel equipped to deal with them. And then you get this one huge thing come up and all of the ways that you've had to cope just don't apply here. And I do find that a lot with the patient population that I see big high strivers a lot of the time, know, a lot of high and relenting standards. And then there's this horrible  confrontation with, gosh, know, none of what I was doing before I thought I had it kind of sorted really applies here, yeah, which can be really devastating in lots of ways. it all, you know, we're talking about the role of thoughts in these, these physical experiences. And this almost goes deeper to the, you know, the appraisals of symptoms, but thoughts about oneself. I'm curious, you know, from what you've seen in your clinical  practice in your community and the research, how does thought about yourself, how you view yourself, how does that impact on things and coping?  Well, I can talk about it from a patient perspective as a patient myself as well. think what you said about perfectionism and control this, this feeling like once everything else in your life is out of your control, which can happen with UTI, you can no longer be able to work. You sometimes can't leave your bed. You can't leave the bathroom. The only thing you feel like you might be able to rely on is yourself. So you think I will be able to conquer this problem. I will track everything. I will do everything perfectly. I will make this work.  Yeah.  Melissa Audio Fix + Grade (50:25.823) And then you get another UTI and it kind of, it's devastating physically and psychologically. And you think, does it matter what I do? Nothing I can do matters and it won't be enough. And so I think for a lot of people that can be like a sense of blame then I can't fix this problem. And I have been able to fix everything else in my life. And this is the one thing. So it must be something I did wrong. And it's a really hard thing to overcome when it's so out of your control.  Mm.  Melissa Audio Fix + Grade (50:53.793) that also comes from the helplessness. No one else is going to fix this problem for you. You're the only person that can. And then time after time, you're told that you actually can't. So what are your options now? And it's a really devastating place for a lot of people to arrive at. And sometimes people just continue to change things over and over to try and make do it better this time. I shouldn't have had that one drink. Maybe I shouldn't have eaten sugar, but it's just...  Mm.  Melissa Audio Fix + Grade (51:18.903) There's nothing you can control about this situation. And it's really hard to internalize that. How do you ever tell yourself, I should just accept this complete lack of control when that lack of control is resulting in frequent pain and a total destruction of my quality of life.  Yeah, you remind me of somebody that I worked with, similar sort of thing, right? Nobody else is doing this for me. Nobody else is helping. And so it's all on me. So the coping mechanism turning to restrictive diets, not having any sugar, never having alcohol, and way more besides, know, lots of supplementation, what have you.  And then I remember exploring with them. what, what happened when you got that flare? So they were stuck on the toilet, feeling that intense urge to go, but couldn't go as is characteristic often. And they were saying that there was so many thoughts of like, what did you do wrong? What did you do wrong? And that became a really overwhelming experience. And when we were exploring, could there be an impact of that harsh?  self-talk, you know, in that moment, could that actually be added to this horrible experience that you're already saddled with for lots of reasons, not all of which we can micromanage or ultimately influence, which as you say is just a hard reality to get behind. She reflected and I remember her coming back and saying, you know what's really interesting? Had another flare, but what I tried instead was  when I recognized that I was doing the same thing of like, did that wrong, you shouldn't have done that. I actually ended up trying to be nicer to myself and the pain was still there to some degree, but the degree of urgency massively reduced and it was pain that meant that I could actually leave the toilet rather than kind of stay doubled over. And we both really marveled at just that acute, it doesn't work like that for everybody in every instance, but just how acute that impact of  Sula Audio Fix + Grade (53:29.622) self-criticism, blame can have on that physical experience. And I know that's something that I definitely personally experienced when I was kind of catatonic, because I was just like, well, there's nothing I can do. And just that spiral of blame, it really shifted things when I could be a bit kinder.  Makes sense.  That's right.  It does. And I think it also relates to, you know, when you think of how people's psychological makeup is, you know, particularly when you are high functioning and you're quite successful in your life, you learn that you have a lot of self-efficacy and control is in your favor. And when you have that locus of control kind of yanked out from you, it can be so challenging. And that's why we see the construct of intolerable  intolerance of uncertainty as such a high marker for a lot of this stuff and that could be used as a little bit of a proxy for the pinkatashavizing scale because it's really this reality of at some point the exceptions that sometimes I can't control things and sometimes there are things that are unpredictable but for a lot of people with that high perfectionism that  Laura (54:43.308) be so distressing and challenging. And then you almost put more eggs in that basket and try to track more things or go to more clinicians or try different diets. And then it's that cycling that really your nervous system just kind of throws up its arms and just goes straight to danger mode.  Yeah, and like you were saying, Melissa, like how do we make someone feel comfortable with that acceptance piece? You know, there are things that you might not be able to control about this. I mean, the two strands of that, right? How do we make people feel accepting of there's some things that you're not going to be able to control in this experience? And also, how do we make people feel less?  fearful of pain that they've already experienced when they know how bad it can get. I'd love to hear Laura your thoughts on that because it can feel preposterous of an idea even to say, I know I've said to people before, it makes sense. There's a lot of fear associated with this pain. What we're going to try and do is reduce the degree of fear around the pain. And they're like, well, how can you do that with the pain being the same? So yeah, I'd love to hear your thoughts Laura and what you kind of do with patients as well.  think one of the best things that we can do in those moments is validate. And we cannot ask people to accept or change without validation first. And they truly have to feel to their core that they are being validated, that their symptoms are being listened to, that their symptoms make sense and there's reasons for them happening. And then once you're able to bring those parts to the table, acceptance doesn't feel like such a hard feed.  because it's almost cruel to ask somebody to just accept suffering and pain and all of these things that are absolutely intolerable if you also don't give them the validation that these things are real and happening to them. So I think the first step, and there's some academic research to show this, and clinically this is what works really well, first step is always validation.  Sula Audio Fix + Grade (56:37.838) Yeah, it's such a, it also relates to the thing that I'm constantly talking about in the healthcare system as well. When well-being physicians will say, you know, you need to go to a psychologist.  when people are presenting with physical health issues. And I'm like, maybe so, know, maybe that's helpful for them, but put that way, it's not gonna be helpful for them at all because you haven't first of all acknowledged and validated what they're going through. And perhaps there's other avenues left unexplored, which you haven't explicitly said. So in doing that, that's only gonna make them feel that phrase again, it's all in your head. So it's really interesting to.  Mm-hmm.  Sula Audio Fix + Grade (57:32.768) yeah, to see that the research also reflects that, that's like a key part. And again, to geek out on your research there, Laura, I think you did some research on like this, stages of the journey, which Melissa was also talking about earlier, you know, we have to adapt to where people are, and people have to, you know, learn to shift with their own journey. But it's true, right, that for some people, acceptance is just not going to be where they're at.  It's not where they're at and you really have to be able to meet patients where they're ready to be. And so if they are still really hung up on the medical system and getting assessment, diagnosis and treatment and getting second, third, fourth opinions, as a psychologist, our job is to be there with them through that to...  help them feel validated approach, know, maybe help them be a little bit curious about what might be going on within that process. And there's lots of things that we can do, like motivational interviewing to help try to nudge them along that readiness scale. But ultimately, if you're trying to meet a patient in the action phase and hitting them with you need to change and you need to cope in this way and you need to change your diet, but they're still like, whoa, whoa, whoa, like,  I need to be medically assessed, like I need some medical treatment, this is a real problem, that's where the mismatch is. And you're probably gonna do more of a disservice and make them push back on mental health support and psychology and that whole framework much more than if you were to meet them where they're at and help them throughout the process, you know, talking to the audience and what they're ready for.  Yeah, Melissa, I'd love to hear from you as well around, you from what you do with your online community and also what you see people doing within that community. What are the sorts of things that people can turn towards to help them feel a bit more sense of empowerment? So it's not complete, you know, threatening overwhelm and resignation.  Melissa Audio Fix + Grade (59:43.543) Some of the things we've already talked about. So while tracking can be a burden for some people, other people, it's the first time they've noticed that something is actually going on. And that alone can be enough to put them on a path to finding a different kind of specialist. So it could be that, and it could be organizing your thoughts. So using downloadable resources or worksheets that we have one, and there's some by other organizations that can help you document your journey, document your history, document your symptoms.  Hmm. .  how you feel what your goals are for your next appointment, identifying your goals and the questions that you have can be really validating of your own experience because you haven't documented it's like concrete evidence of your experience. So that can give people a sense of control. And so you can just talking to other people about it so that they have actually shared their experience and said it out loud. And that can be really important. But again, the community aspect of this can be quite damaging for some people. So it's really important.  take what you need. And we often suggest that people go to the communities when they're considering a certain type of treatment and they want to understand the recovery period or something specific, but not to just lurk on the internet in communities and listen to everybody's horrible experiences. Because like you said, Laura, people need to vent these experiences, but you don't need to be there to listen to them all the time when you're trying to figure out how to dig your way out of your own.  And so it's really just about making really micro decisions about what is making you feel better or not. And you can test these things. You can just not go into the forums for a few days and see if you feel different, or you can go into a forum for the first time and see how you like it. And there's also different types of groups and different ways that you can connect with the community. And a lot of people, think, find control in sharing their story publicly. And we've seen that quite a lot. A lot of people have started to share their stories on video and we've always had written stories, but  Melissa Audio Fix + Grade (01:01:34.431) The video has become a more recent thing where the patient community, the stigma seems to be diminishing somewhat. And we've had so many volunteers who are willing to go on camera to talk about this, to help other people. And that feels empowering when you help other people by just being a voice in the community. And then that is a sense of control because you're helping to control the broader narrative, not just your own. And all of these things can be so empowering and feel like forward motion.  even if you're not better than you were yesterday. And I think that feeling of forward motion is really what relates to control for lot of people.  Yeah, I actually I really like that phrase the feeling of forward motion because  it can be really overwhelming to try and even figure out what is my degree of control and where is this actually going to get me. But focusing on some of those little elements that give you that sense can be really transformative. And there were some things that you said there that stood out to me in terms of the kind of themes from it of getting tangible, right? Getting specific goals for your appointment.  Mm-hmm.  Sula Audio Fix + Grade (01:02:43.63) identifying what it is that you want out of being in the forum at the particular moment. And I guess all of that, you know, really helps that sense of personal agency and empowerment as opposed to feeling passive and lacking that sense of agency. And the other thing and then the other theme as well was the experimental nature of it of like, okay, we'll try this might not work, but we can try something else afterwards and we can see, you know, one thing against another.  Anya?  Melissa Audio Fix + Grade (01:02:55.148) Okay.  Sula Audio Fix + Grade (01:03:12.782) And that really, I utilize that and I'm sure you do as well, Lauren, when you're doing therapy with people, that sense of curiosity is just such a great way to set anything up. We don't know how it's gonna go, but that doesn't mean that it's gonna go bad. We're just gonna find out some information which can really reduce the degree of threat. And the other thing that you said there, Melissa, that was really interesting to me was the sense of helping other people can be really helpful. Yeah, it might not be the thing that dials your symptoms right down acutely.  But what I have found, and I wrote about this in my book as well, which really fascinated me and it makes me think that I really want to do even more research on this, but this concept of self-transcendence, which is like, you get so sucked into your own world when you're ill and you're dealing with physical symptoms.  Mm-hmm.  Sula Audio Fix + Grade (01:03:59.52) It's very, and some of that is absolutely, of course, necessary because you need to problem solve. like we've acknowledged a lot here that there is a sense of, if I don't help myself, who's gonna, who's gonna come and help me. So you have to, but quite quickly that can really get you spiraling in your own, your own problems and own ruminations. And the world outside can feel quite alien. And particularly when we're wishing that somebody else would come and help us.  Mm-hmm.  Sula Audio Fix + Grade (01:04:29.408) It kind of makes us feel so insular and that we forget that we can have a positive impact on other people, which can also be connecting. .  Exactly. Yeah, and we see that a lot in our research as well. We run a lot of research and we facilitate research for other researchers and we facilitate recruitment for research and we've done a lot of work on why patients participate because one of our whole goals is to activate this involvement in research. 92 % of people on a recent survey we did said they wanted to do it to help other people. And I do think...  That moment of realization is what you just said, Sula, that people will often be like, why won't anybody help me? And then they'll think, well, I could help someone. And it's like a really nice circular community in that way that everybody's getting involved. see the same people applying for every research study and they know, they say in the qualitative data, they know this study is not going to help them. They know they'll be dead by the time this treatment comes to clinical practice.  Mmm.  Melissa Audio Fix + Grade (01:05:27.839) but they want to do it for the future generations. They don't want another single woman to have to deal with this problem. And it's so encouraging to see that shift in that community environment, that culture of just trying to make it better for someone else, even if it's too late for me. it's really sad, but it's also really encouraging.  Yeah, is. It's really beautiful, actually. I'm always kind of inaudible, seeing people come together to look after, you know, others very altruistically.  Mm-hmm.  And I think that ties really nicely into the concept of advocacy and post-traumatic growth.  Hmm.  Laura (01:06:02.382) So a lot of the stuff we're talking about, it's not surprising that many of these individuals, medical trauma is real thing. And so when you're faced with it, one of the ways to process and develop resiliency is that post-traumatic growth. And sometimes that's paying it forward and advocating and making sure the people and then the generation behind you might get the kinds of support and treatment and validation that you might not have been able to receive.  Yeah and Laura for those that might not be familiar could you just explain a little bit about what that term is post-traumatic growth?  Absolutely. So post-traumatic stress, think a lot of us are quite familiar with. That's when you go through a really stressful experience and you start to develop all of these traumatic reactions. So things like hypervigilance, you have cognitive effects, mood effects. There's the arousal issues like sleeping, irritability, all of that. And then sometimes, as you're starting to process through these traumatic events therapeutically or on your own,  you start to grow and actualize from the experience and you kind of develop a point where you're moving well beyond that maybe where you started from and you're able to use those kind of experiences to develop further into who you are, who you want to be and all of these positive psychological characteristics.  Yeah, and I always kind of, I find myself talking about it people with people more, just again, coming back to what you were saying earlier, Melissa, about the phases of the journey that people are on that often comes up when people are approaching that or kind of close to their. Whereas I know people at the beginning of the journey, it might be quite unhelpful.  Sula Audio Fix + Grade (01:07:55.564) thing to pose because it's one of those things that puts pressure on them. But nevertheless, I think it's so helpful to understand as a concept that that can be there as a happy outcome from a really unhappy experience. And it really does give people a lot. Can I ask then just to go back to, I think, a term that you used earlier, Laura, about cognitive flexibility.  So I guess so far we've looked at the many ways that our thinking can change when we start to experience difficult pelvic and bladder symptoms and or bladder symptoms and the understandable ways that our thinking can also get quite rigid because of the nature of these things being threatening. So, well, I guess first of all, what is cognitive flexibility and then, and how can one become more cognitively flexible?  That's a great question. so I think it comes back to why our thinking might become rigid in these kinds of experiences. And again, it goes back to that neurobiology and safety and danger and all that. So when we go through life, our brain has to develop these automatic thinking patterns and heuristics just so we can go through life because there's so much happening and programming that's running behind the scenes.  So we're able to function real time. And sometimes when, you know, things are challenging or we keep running into these danger signals, or maybe there's a lot of anxiety in our life, our brain tends to fall into these heuristics and traps again and again and again. And what happens is it tends to go on in the background and we're not even thinking about it. And then all of a sudden we realize that our brain is quite rigid. And this  necessarily means this, which equals that. And so over time, it's just neuroplasticity, just like learning a new instrument or a new language and a brain that's really used to in thinking in those ways. So then when somebody starts to challenge or to be curious or to ask you about those kinds of thoughts, it's really hard. And it's because you've been thinking in that way for so long. And so what  Laura (01:10:21.486) people can start to do is the cognitive therapy practice. And I'm wondering if Melissa, if some of those worksheets are similar to thought records in terms of cognitive therapy. So starting to really look at what are my thoughts? What are the associated feelings that are related to that? And how do I cope with that? Like what are the behaviors and actions that come from those thoughts and feelings?  And so once you're able to look at those patterns, you might be able to see some common themes and how you might be falling into these traps and what negative consequences might be associated with that. And through practice and repetition, you're able to potentially change some ways of thinking, change some, you know, behaviors and coping and actions. And what that does inevitably is indirectly change the emotional response.  So maybe it's less negative or even maybe it's positive, like you have more hope for the future where you're feeling more validated in your experience and you're feeling more efficacious.  Melissa, can you relate to that from your own experience? Did you notice a shift in how you were thinking about things that had an impact at all? Hmm.  I did, but I also see that sometimes a single event can just immediately change the way that people think about things, especially if they've been gaslit by the medical profession to be told that there's nothing wrong with them, the test is negative, and then they educate themselves about the topic and they discover the limitations with the testing. And they immediately feel vindicated and it shifts their whole perspective about what they've been experiencing, gives them a whole new set of tools to continue with and then to pursue other avenues.  Melissa Audio Fix + Grade (01:12:01.633) So it's, it really depends, but I think that comes down to both the importance of self-education and self-advocacy, but the frustration that patients should not have to do that. And that's always advice that we give patients is just to try to learn a little bit about this. many topics around the problem. Start with one, learn about the testing that will probably validate a lot of what you've experienced. And then you can learn about hormones and then you can learn about something else and just see which parts resonate with you.  and then think about them more or dig deeper into the research. And all of that also helps to change the way that people think about things because it opens up possibilities and understanding. But it's deep. The information is really deep. So it's important to go slow and just take what you can handle and absorb it in formats that work for you and talk with other people about it. And all those things can shift over time, but  What you said Laura about whether we're working on this, we are looking at building some interventions, especially for patient practitioner communication, because that is such a sticking point for this topic. And that's something that we're hoping to do next year to really help both sides of that conversation, make some changes that can help patients move forward in much better ways.  Very exciting, yeah, you'll have to keep us informed and we can signpost if there's any way for people to get involved in that initiative, because I know, yeah. But interesting as well, just to acknowledge, like, I make this differentiation between kind of our top level, most accessible thoughts, and then our beliefs, right? And obviously the two are so interconnected, so if I believe I won't be helped.  We will definitely, yeah, great.  Sula Audio Fix + Grade (01:13:43.65) then when I've got a doctor's appointment, I'm more likely to think, well, nothing's going to come of this. And so to your point, Melissa, to help us develop beliefs that there is scope for improving things, it's really important that we're informed and that we are able to access really important information. And ideally, the systems would help us with that. So we'll keep fighting that good fight. But in the meantime, know, when  we have these challenging experiences that then give these automatic thoughts that make us think, well, this isn't going to go anywhere or, you know, gosh, I've got another symptom and that means everything's going to get much worse. In those instances, it can be really helpful, like you were saying, Laura, to just spot how quickly it sprouts and then, you know, germinates those ideas because that can quickly then make us feel  disempowered, less able to engage in those resources and inform ourselves. So it's hard to know when to reach for what tool, but I think to your point, Melissa, just recognizing that there are choices. Sometimes it's going to be arm yourself with information and act, enact whatever control or empowerment you can in your patient position. And other times it's going to be, well, let me work with the internal processing here, but it.  And I think that's like essentially what cognitive flexibility is, is being able to shift and pivot. If all you're doing is just trying to change your thoughts and invalidate yourself versus all you're doing is only looking for information because there has to be one reason, none of those solutions are going to work all the time. And I think the construct of cognitive flexibility is being able to shift and pivot and acknowledge what's going on and have insight.  Mm-hmm.  Sula Audio Fix + Grade (01:15:11.982) Yeah.  Melissa Audio Fix + Grade (01:15:23.799) Mm-hmm.  Laura (01:15:35.15) And I always like to say that often 75 % of treatment is just insight because once we intuitively know and see those patterns, we necessarily want to change. It's such a natural and intuitive process to problem solve once we understand and can pivot. And so I think that really highlights what that term can be.  Yeah, I like that term for it as well, to be able to shift and pivot, feels much more possible and accessible actually in those moments. And also, I suppose, less self-pressurising. Like how could I shift and pivot? It feels much more...  feasible then how could I be more cognitively flexible about it? I like that.  I know. And I always like to describe it, you know, when I'm working with patients that, you know, depending on what their movement routine looks like, we're going to try some, you know, cognitive yoga today. We're just going to start to work on the splits, or maybe we're going to like start to do some bicep curls of like they're into weightlifting. And so you really, again, talking to your audience and what they're ready for, but you know, finding analogies that work for them to understand what this process is and how it's worked in other ways of their life, maybe more concretely.  can definitely help them with the abstractness of what cognitive flexibility can be and how they can do it.  Sula Audio Fix + Grade (01:16:57.966) And I guess on that note, I'd love to hear from you both. Laura, we've already touched on this, you know, to that point around building cognitive flexibility. But if there was one or two kind of practices that you would encourage people to try out to help them change their relationship with difficult or fearful thoughts around their pelvic and bladder experiences, what do you think you might suggest?  think noticing. So much of what we're talking about is insight and noticing. And so it's a tricky U-shaped curve where logging and tracking can be so super helpful, but it can also go to the extreme and make people super hypervigilant and hypersensitive. So somewhere in the middle, I think that logging and tracking, you know, what's going on, but not just, you know, the symptom.  but the symptom, what else is happening in their life, what their emotional state might be, and just big picture that insight can be super helpful as a practice.  Yeah, it's a really good point and it also relates to what you were saying earlier, Melissa, about like just noticing what comes up for you when you're using the forums, you know, is that helping you and being intentional as well, I suppose, in terms of what you're, you know, what you're trying to get out of certain different things.  Mm-hmm.  Sula Audio Fix + Grade (01:18:26.656) And for you, Melissa, what would you say, what would kind of one practical step might be that somebody might be able to take away from, yeah, well, to take away just generally.  I think it's, it probably comes down to educating yourself and just learning a little bit more about the condition and how the science might relate to your experience. We try to do that to explain what the science says, how that might feel for you and your body as a physical symptom so that people can then start to think about their physical symptoms in terms of science. Like this could be what's happening now. This is caused by information. This is my immune system's response. Sometimes those help you to disconnect from.  the emotional response to the symptoms as well. You know your body is doing this for a certain reason. You know, that's why you have symptoms now. This is part of a cycle and it can help to kind of be really pragmatic about it when you learn that. And then I think this is a bit of a shift in pivot for me, but I think that doing things like mindfulness practice and breathing exercises or bladder friendly yoga practice can be a really calming and like fulfilling experience for people just to have something else to think about.  for a minute, especially for people with symptoms all the time. It might give them one moment of calm in a day and that could be something practical, something better than yesterday. And so it's again, just about finding what really works for you and to look to experts who have developed these types of programs. And there's a lot of free resources online. And we also have some lot of friendly yoga reels on our socials now. We're just trying to cater to the different things that might work for different people.  Brilliant. And.  Laura (01:20:07.202) And think following up with that, Melissa, I think it's so important to advocate if there's any clinicians or practitioners listening in, in the sense that often we think that neurobiology and neuroanatomy and science might be really challenging for patients and people to understand. But the reality is when I give presentations, you know, the same slides I use for neurobiology and academics are often the very same slides I use with patients.  So let's not, you know, belittle the information thinking that our patients don't have the capacity to understand neuroanatomy. They absolutely can. And it's our job as clinicians to help them and communicate that knowledge in a way that lands. And just like you were saying, when they know that science and they have that education,  Mm hmm.  Laura (01:21:00.376) they're so much likely to understand what's going on in their body, which decreases fear, makes them feel, you know, more efficacious in their coping, and they're able to do so much more to help themselves.  Mm-hmm.  Melissa Audio Fix + Grade (01:21:12.217) Yeah, I couldn't agree more.  Yeah, to that point, actually, that psycho education  providing that information, making sure people are informed and helping them, like you were saying, Melissa, understand actually the science of what's going on in your body can in itself help you change your relationship from one that might feel completely helpless and powerless to, well, at least I know conceptually what's going on. And when we did our study, which was on irritable bowel syndrome years back,  Mm-hmm.  Sula Audio Fix + Grade (01:21:45.886) one of the key elements of the intervention at the outset is quite some hefty psychoeducation about what the digestive system is, what it's doing, what it's doing when you don't have IBS symptoms, what it's doing when you do. And I remember, I think it was like 570 participants in this trial, something like that. One of the most common things that we heard back from them was, if only I had been told this at the outset of...  having IBS diagnosis, like things would be so different because now I know why this is happening. I also know that, you know, straining on the toilet isn't going to help me. It's actually going to make it worse. So to your point, that then allows you to be making informed decisions about how you how you cope and how you adapt as well as reducing that sense of fear. So I think those are two wonderful next steps, really, you know, going back to to get in.  Mm.  Sula Audio Fix + Grade (01:22:42.446) Trustworthy information which in itself can be a battle but we've got we're gonna have the signpost into your various resources and people that have been on throughout the season as well so those are really good places to start and Increasing that awareness and noticing I think that's a really lovely Place to end but I'm so grateful to you both for joining for actually what ended up being a Long conversation and I'm glad it was but I hope that's okay with you guys  Yeah, it's really great. Thanks so much for inviting me.  Yeah, it's my absolute pleasure. It's been so wonderful to deep dive your research. I honestly could go on for another 40 minutes, but I try and be respectful of everyone.  I know it's been so fun. I was just saying before we started, it's so lovely to be able to meet people exactly like ourselves. I find we're unicorns in this field, so it's lovely to be able to connect with you and thanks so much for having me as well.  Yeah, my pleasure. What I'm going to do at the end of... I think... What did I say? I can't remember. But what I was thinking of doing was just seeing who would be interested in being put in touch with other guests that have been on the podcast. Because what I'm finding is people haven't generally met each other somehow, but we're all doing such complimentary work.  Sula Audio Fix + Grade (01:23:58.412) Yeah, there's the option to keep in touch. Yeah. Well, thank you both so much. I really appreciate it. And what I'll do after the episode is pull together some of the things that we mentioned and some of the resources that I think are relevant from your various bits of work. But if you've got other things as well that you want to be signposted to, we'll add those links and things.  Yeah, that'd be great.  I'd love that.  Melissa Audio Fix + Grade (01:24:23.609) Sounds good. When are you launching the podcast?  So I'm hoping to do it end of March, maybe early of April, the first one will come out and then I'm to do weekly episodes. We're trying to batch them all this side. Yeah, Matt's got a, Matt's got the fun job of editing the podcast. But yeah, so I'm very much, it's.  Yeah. Good call.  Melissa Audio Fix + Grade (01:24:44.975) Thank you.  such a privilege to be able to do it because I'm just talking to wonderful people doing really interesting work. So yeah, thanks again guys for joining. Right, so I'll let you guys go, but what did I need to do? I would need to press stop.  That's exciting.  Melissa Audio Fix + Grade (01:25:05.696) No.  Yes.