Interstitial cystitis (IC) is not a single disease but a pelvic pain syndrome with multiple distinct phenotypes, each requiring different treatment approaches. The 87% of IC patients with tight pelvic floor muscles respond best to physical therapy, while patients with Hunter's lesions (5% of cases) may benefit from antiviral treatments for viral infections or topical estrogen for estrogen atrophy. This phenotyping approach explains why bladder-focused treatments like Elmeron have failed in clinical trials, as they only address one specific subtype. Understanding your specific phenotype—whether bladder wall driven, pelvic floor driven, pudendal neuralgia, or widespread pain—is essential for effective treatment planning.
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Live IC/BPS, Pelvic Pain, Pelvic Floor Dysfx, Hunner's Lesions - From desperation to a logical plan本站添加:
All right.
Hello. Hello, my friends.
It's Jill Osborne from the Interstial Cyitis Network. It is Sunday, April 26, right? Yeah, Sunday, April 26th, and it is time for another live IC support group meeting now. And I'm actually early by two minutes. Woohoo. That's a victory. That means technology is working today.
Anyway, my purpose in doing these meetings is to make you so strong, so knowledgeable, and so informed that no one can mess with you. I don't want anybody telling you the all in your head. I don't want anybody telling you that you're damaged goods. I don't want anybody telling you that you're unlovable. Hello, Kathy. It's nice to see you, hun.
You know, here's the thing.
When you have a hidden disability and when you live with pain that other people cannot sense, understand or be compassionate for it.
It is very mentally challenging and our self-esteem starts to plummet as we see our friends going out and having babies and doing all sorts of fun things while we're stuck at home.
It is very important that you remember that you are worthy, that you are loved, that you have done nothing wrong, that you should carry absolutely no shame or blame about what you are struggling with. You are no different than somebody who is hit by a car. But here's the thing, especially for women, but men do it, too. Listen, men and women have different societal expectations. For men, you're told, "Figure it out and fix it."
But listen, pelvic pain and I see is very complex in a man. You can't fix it on your own. You need help. But it is very, very challenging when society says it's your job to fix this and you don't even know what to fix or for example, you're assuming it's a prostate problem, but all your prostate meds are failing, right?
And for women, this is true for men, too. You know, we're so used to being casually disregarded by family members and friends. We're so used to seeing eyes rolling. We're so used to having, you know, I I mean, I I'll tell you, like it happened it happened recently to me when I had the flu in December and it affected my heart really badly and I woke up and my heart was racing like it's never raced it before because I turned out I was in atrial fibrillation. I had no idea. I knew I was very sick. I knew something very very bad was happening. I could barely walk the I was dizzy. Called 911.
Obviously got to get to the hospital. No doubt about that. And literally the firefighters came in and said, "Are you sure it's not stress?"
They hadn't put the heart monitor on yet. They didn't know what was happening in here. They didn't know how that I was in pain and struggling. Literally, this young cocky guy says, "Are you sure it's not stress?" And I looked at him dead eyee and I went, "Sir, if this was stress, I'd be in the bathroom because that's where I go when I'm in stress."
And they were like, "Oh, good point."
Then they put the heart monitor on me and they immediately gasped and went, "Okay, we need the ambulance now." And then the ambulance came in and their first question was, "Do you want to be revived?" Because they thought I was going to die. That's how bad my aphib was. Thankfully, I didn't. And I said, "No, I've got at least 20 years. You're going to revive me." But that casual disregard, that assumption that a woman could be exaggerating is common. And you know what that does?
That affects our self-esteem.
That makes us wonder if this is real.
And I've worked with you. I've worked with patients who legit have serious injuries who start thinking it's all in my head. Maybe I need therapy. No, you don't, honey. You've got a massively injured pelvic floor.
You've got a pelvic injury. Granted, therapy is certainly important because for our sanity, there is no doubt about that. But don't roll over and accept it. Do not do that. You deserve as much care as somebody who was hit by a car. You need family members who will be there for you. You need children if they're there to be there for you. And for God's sake, don't hide it from your kids.
Don't do that because you're you're not giving the opportunity to learn how important it is that you help when somebody is not feeling well.
They have to learn that. And here, hold on one sec.
They have to learn that from you.
So, don't hide it.
Don't go hide in a room. If you need help, you need to ask for it. If you need support around the house, you need to ask for it.
And don't start thinking that you're unworthy. And don't start thinking that you're damaged goods. And don't start thinking that you're unlovable. I'm going to argue to you that you're going to be the best mom you could be. Maybe better for the experience. Cuz you know what? You will never ever walk away from somebody in pain. You won't. You know what it's like to suffer and be alone.
You know that. And you know how important it is to have somebody at your side. You know how important it is to have somebody come with you to the doctor. You know how important is to somebody help you with your decision- making. Right?
So anyway, I'm going to talk about something today that is very very near and dear to my heart. But let's just wait a few minutes. Let people coming in. Right now we are live streaming on two platforms. We are live streaming on Facebook and we are live streaming on uh YouTube.
Um let's see here. Donna says, "Hey, Sister Jill." Donna, you look so beautiful. I miss you. Mom is getting weaker. I'm doing the best I can. You're always in my prayers and my heart. I love you, Donna. You are my sister from another mother. And I want you to give your mom a hug for me. And I want you to imagine that I'm giving you a hug too because caregiving is very very difficult.
That's very very difficult, but it is also the right thing to do. And you know, you wouldn't want it any other way. Uh but you got to have good support skills. You got to have good self-help skills. You got to have a lot of help and and an opportunity to de-stress whenever you have the chance to de-stress. You know what I mean? Aaron says, "I'm so glad you're still here with us." Yeah, I am, too. I'm not going anywhere. I'm telling you right now, I'm not going anywhere.
This I I mean, my plans is I I'm going to work until I'm 70 running the IC network, but when I'm 70, I'm going to step away from the stressful part of it, but I'm still going to be here.
Undoubtedly, I'm still going to be here because this is what I do.
Uh, Ann says, "What are my thoughts on marshmallow root?" Marshmallow root for flares.
Okay, actually this is a good segue into what I want to talk about. So, let's let's hold that thought. Let's just wait a couple more minutes here. Now, I don't know. Is something big happening today?
It's not a Super Bowl weekend. I know that Donna said you needed to hear that.
That's why I love you so much. You know how you just meet people and you just know that you're you are That's how I feel about so many of you and Donna, you know, that's how I feel about you 100%.
Okay. So, it's always interesting when I do these meetings because I always get phone calls afterwards saying, "I watch your show. I watch your show." And it is very very true that uh for the most part these these streams are watched after they're done. So when I do a meeting, you know, we might have 30, 40, 50 people in it, but by the end of the week, anywhere from three to 5,000 people watch it. So it is what it is. Uh I will be here as long as there are questions. If there are no more questions, we will just move on and I'm going to go weed in my front yard. It is a cold, foggy day here in California. I want the sunshine. Please give me sunshine. I do not want another year of fog all the time. I just I crave sunshine.
Okay, so here's the deal.
And you know, obviously I haven't rehearsed this. This is just coming from my heart and my soul.
Every single day in the IC network, I get phone calls from patients who are frantic.
They are desperate.
They have a flare. They have a new diagnosis. Their symptoms are off the chart. They don't know what to do. And so obviously they get online, they come into support groups and they watch everything and they hear everything and they beg for advice.
And before you know it, this one person who's in this really horrific flare has been told, "You need to start ale. You need to do this. You need to do that.
You need to take antibiotics. You need physical therapy. You I mean, oh my god.
And then, God forbid you go to a doctor who, especially a naturopath who's selling a bunch of supplements, before you know it, you're going to walk out with $500 worth of supplements at every appointment because you're desperate for relief.
And that will never get you where you need to go with respect to controlling your symptoms and reducing your symptoms. I call this the kitchen sink approach to IC. It's like, man, if somebody said that, I'm going to do that. Somebody says that, I'm going to do that. I'm just going to do everything. Give it to me. Give it to me. I'll take whatever it is. Give it to me. You're so desperate.
you'll do anything.
In the end, you've made the situation a lot harder, a lot more complex than it really needs to be because pain is either coming from muscles, it is coming from nerves, or it is coming from the organ itself.
And that includes skin.
And so in your brain, instead of going, "Oh my god, oh my god, I don't know what I I don't know what to do. I don't know what to do." I need you to just take a deep breath and go, "Okay, what is the health of my muscles? Do they feel tight or do they feel good?
Can I urinate on command or am I struggling to urinate?" That would tell us if your muscles are part of the problem.
What's going on with my nervous system?
Do am I do my nerves feel physically sensitive? Now, I'm not talking about psycho babble here. I'm talking about a nerve that is inflamed because underneath I see symptoms there is a lot of neuroinflammation going on.
And so our next question is what is the health of my nervous system right now?
Am I do I feel incredibly inflamed down there? Am I having pain not just in my bladder but in other parts of parts of my pelvis? Do I have sciatica which is an example of nerve pain shooting down a leg? Do I have prickling pins and needles in my skin? Do I have any other symptoms of nerve dysfunction like pain when I sit down that gets better when I stand up?
That's important. We need to know what's going on with your nerves. And part of that is going, "Am I really, really, really, really anxious?"
Because if you're really, really, really anxious, your brain is going to intensify your pain.
Pain that is accompanied by anxiety is intensified by the brain. That's part of pain processing. That's part of fight or flight. That's all about your midbrain telling your your upper brain, you got to do something now. This is really bad. I need you to do something right now to stop that pain.
So, the midbrain intensifies that pain message. In contrast, pain that is accompanied by laughter is minimized by the brain because if you're laughing, clearly your life is not at stake. Therefore, this is not a big deal. We don't need to take this as seriously. Let's just calm it all down.
So if your anxiety is out of control, that is going to intensify your pain too. We have to. And you know, listen, I have anxiety disorder. I have had anxiety disorder since I was a kid and I was attacked.
Y'all know my story. I was attacked by a young man who later became a rapist and murderer. I did not leave my home without fear for a decade. Believe me, I had anxiety disorder from the moment I was attacked. And to this day, decades later, I still have anxiety from that.
Granted, it's much more controlled now, but anxiety is real. So, we have to just understand and accept that when our brain is in a state of fight or flight, pain gets intensified. So, we got to bring your body out of fight or flight.
How do we do that? Deep breathing. some of those very, you know, breathe in for four, hold for five, breathe out for seven. Some of those really basic CBT.
Got a really good section on our website about this and we're going to be working on this a lot more. I've got a couple of new experts that I'm going to bring in to help us flesh out this area. Okay.
So, what is the health of my nervous system physically and emotionally?
And then, what is the health of my skin?
And this is particularly true for women because if you feel dry down there, if your vulva feels dry and your vagina feels dry, then the odds are so is your urethra and so is your bladder because that's estrogen atrophy.
And so depending upon those really simple questions, that tells us how we need to fight this flare. We're going to step away from fear and anxiety and freaking out and again throwing everything in the book at it, wasting thousands of dollars, hundreds if not thousands of dollars.
We're going to take it a step back, take a deep breath, and go, okay, what are we dealing here with here? What kind of flare are we having?
What's hard about this is that we just want it to go away. We just want to get better. We want to go to a doctor. We want the doctor to give us a damn pill and make it all go away, right?
But pelvic pain is not that simple.
Pelvic pain is not a disease for most of us. Pelvic pain is an injury for most of us. IC is an injury for most of us. 87% of IC patients have tight pelvic floor muscles. And I'm telling you right now, if you were doing a coaching with me, I do a deep dive into your past. I want to know about all pelvic trauma. I want to know about if you rode a bike when you were a kid. Were you doing ice hockey or gymnastics as a kid? Did you ever fall downstairs as a kid? Did you ever fall on your tailbone as again? Oh my god, the number of IC patients who fell on their tailbone and ended up developing chronic prostatitis and Icy and all these issues. You'd be shocked at the number every single week.
Two or three more patients who call who all had a tailbone injury.
Okay. So, so Palm here on YouTube says, "Just had a hyerectomy in January.
you're in major bladder spasms. Now, I had involuntary muscle spasms for almost a year after my hyerectomy.
That's not a disease. That is a surgical trauma. And that is a surgical trauma to potentially your pelvic floor muscles or because if it were a total hysterctomy, you are now in total estrogen atrophy.
So, what that then means is that your bladder doesn't have enough estrogen to make mucus because they took your freaking ovaries. So, you may also now have what we call the genital urinary syndrome of menopause. What is the health of your skin, not a disease, dryness. So, there are two major reasons why people struggle after a hyerectomy. And the thing is is you're just three months out, right? So, this is new for you. And when you have a hyerectomy, you are given very, very clear skills and instructions on what you are not to do. Most importantly, lift things, girl. Lift things. Do not lift your groceries. You can only lift your births, and that's only if it's under five pounds.
The sutures that you get when you have a hyerectomy are 90day sutures. So, they don't dissolve for 90 days. You're kind of at that 90 potentially a little bit past that 90day mark now. So, we would assume that the the the skin has healed, that the sutures have begun to dissolve, but you're still real fragile girl. So, you just got to go slow. It's I know that they say that you don't really feel better after hyctomy. You don't really feel yourself after hyerectomy really for about a year. And I'm gonna say I had my hyerectomy in 2016 and absolutely true for me. It was really at the year mark where I started to feel norm normal again. And palm let me just say one other thing.
There is in addition to the physical trauma of what you're going through and whatever reason they gave you for needing to have a hyctomy, there is inevitably going to be an emotional reaction to that hyerectomy. And that hit for me a couple of months later where I just burst into tears.
And it was, you know, you have to remember a hysterctomy is like the it's the biggest surgery, one of the biggest surgeries a woman can have. I've had two of them now. It's not minor surgery. It's pretty major surgery overall. And you end up also having a bit of an emotional reaction to it. I have lost my ability to have children. Like I've truly I don't have children. I don't I always believe that I would have five.
I'm still stunned today that I don't have children. It's so sad for me that I don't have children. Something I think about virtually every single day. Um, and losing my ability to have children was very was difficult. And so having somebody you can talk to about it. You can call me and talk to me about it.
That's okay. I mean, it just is what it is. And you know, I mean, listen, girl, I had breast cancer last year. So, so I don't have breasts now either. And yet, so I asked my sister literally yesterday when I was up at her house. was like, I don't have the equipment to be a to be a female anymore and yet I am 100% girl and that never goes away. I will always be 100% girl.
Uh Dolphin said, "I had a sacro sacro culpopixy back in 2021. The mesh eroded into my bladder and few mesh erosion revision surgeries. I really suffered. This mesh can cause a lot of issues. You got a name. You got that right, man. Meshes have caused catastrophic damage for so many patients because they don't stay in place. They migrate and they can just cut through tissue. They can cut through the urethra. They can cut into the bladder. It's it's horrific. So, you got your mesh removal from UCLA. Good for you. And that man that's a whole another surgery because that's kind of like hyerectomy in the sense that that is a massive surgery detailed intricate surgery to remove mesh that was implanted for a prolapse or incontinence. Yeah. You had a lot of damage to your bladder and your tailbone. Yep. I'm not surprised.
And I would think and guys you got to remember if you have any tailbone pain your number one job is not to sit on anything hard. We have to take total responsibility for putting any stress or trauma on an injured pelvic floor, an injured uh an injured tailbone and the nerves coming out of the tailbone. And this is where you want to have, you know, ideally, so when when I was having a lot of tailbone pain, girl, this this is the cushion to get groove down the middle. Nothing touches your tailbone. each butt cheek supported right you. So this is called the SunCloud travel cushion. Um uh we used to custom make cushions if for the IC network. I did that for 15 years or more. Our cushion uh did not have as I mean this is the the current SunCloud way better than our cushion. Our cushion was very cheap had a very simple cover. It was under $30 like $28 something like that. cost like $15 to make back then, but the um factory closed during CO and it never reopened. So, we cannot get our old affordable chair cushion. So, the only chair cushion that we have is the Suncloud cushion, which is in unfortunately much much more expensive.
But I'm telling it in a pinch if you're if you got to go sit for a graduation or you're going to go to a fair or anything where you might have to sit on something hard like on bleachers or a BTS concert which I watched last night. Um having this to protect your tailbone was not a bad idea at all.
All right, let's come over to Facebook here. You guys, my rule for doing these meetings is um be the squeaky wheel.
It's very easy for me to miss questions.
Do not take that personally. If I happen to miss one of your questions, just ask it again. You put it in capital letters.
It's fine. You are welcome to get my attention if I miss something. Susan says, "Hey, I started lactoerin. Been out a couple of weeks and my pain is so much better." Yeah, baby. That's what we like to hear. So uh for people who don't know lactoerin is a protein found in colostrum. It is an essential part of the human immune system. Our body makes lactoerin every single day. You have lactopherin right now in your mouth and your saliva and your vaginal fluid. And lactoerin um is a natural antibacterial, antifungal and antiviral. helps your body fight off infection. And so when you have a newborn baby and an infant with the most important mother part of mother's milk is in fact going to be lactoerin because we're building the baby's immune system. Now here's the problem. Our ability to make lactoerin changes randomly sometimes. Sometimes it's age related and I mean they don't really understand why lactoan goes up or down up and down. So, you know, several years ago, they started studying lactoerin, supplementing our own natural lactopherin with some lactoerin from cow's milk from cow colostrum for a variety of adult diseases. And and that was incredibly encouraging. And then a year and a half ago, actually more than that, it was summer of 24, was a week after I had my breasts removed, a new study came out that showed that lactoerin helped red inflamed bladders become pink and healthy and hunter's lesions virtually disappeared. And it was found to be incredibly helpful for preventing flares, reducing um the frequency. I Okay, so 28 out of 31 patients were completely symptom-free after roughly 5 months of treatment, no flares at all. The other three had one flare after treatment. And so lactoerin has become one of the new options for patients to explore um with really good science and research behind it. Now people are going to say do you have a double blind placebo controlled IC study? No we don't. We don't. They can't afford to do that. And right now e IC research money is virtually non-existent anyway. Um, what we've got instead is a preliminary research study without a placebo group that was done at a university in Europe.
And that's reasonable. That's like first level. So anyway, for anybody who's struggling with hunter's lesions that are not responding to therapy, if they're struggling with just tremendous inflammation in their bladder, lactoerin might not be a bad idea. It's a simple over-the-counter supplement. Um, no side effects in the IEC study, very few side effects overall. This is not a synthetic drug that was made. This is in fact a natural product that is derived from colostrum.
Um, and so Susan just started it and that and we see that over and over and over again with patients that have gotten better. And there are some patients who simply have not gotten better. They've given it a good try six months or so and they just don't feel better. And so clearly that's not going to work for their phenotype. Lactopherin is not going to help tight pelvic floor muscles. Lactopherin is going to help bladder wall inflammation. And again that's what we have to figure out is what's going on with your bladder, what's going on with your muscles and what's going on with your nerves and pick your treatments accordingly. Now I will tell you the lactoerin that we have in the IC network shot comes from Australia. It's imported from Australia, thus it's quite expensive at $74. I am bringing in a brand new lactoerin that is a bioididentical lactoerin made by Natural Approach Nutrition. In fact, they finished it last week. I've got to send them a check for it. This my second payment for it. That will be half roughly half the price. So, we will have a new lactoerin that's more affordable since listen, times are tough financially for everybody. That is an undeniable fact.
And I just needed to make sure that we had something more affordable for patients who were on a limited income.
So I am bringing in a bio identical lactoerence. So we'll see how that goes.
Let's see. You're welcome, Susan.
Nina says, "I've done all the vice, all the supplements. You're desperate."
Okay, Nina, we need to know what your phenotype is.
What do our guidelines say? Our guidelines say if you've done everything and and you've not gotten better, we need to take a step back and revisit this diagnosis in the first place. What could we have missed? Because clearly they missed something if you're not responding to treatment.
So, Nina, if you're still here and let me look, you know, guys, um I just understand that that I all I can see on Facebook is the text. I can't see because it just freezes every time I try to do it now. So, I just see text. I don't see anything else on Facebook.
Nina, if you could put in chat if you're still here, let's use you as an example.
Okay. So, my question number one for you, Nina, has has anybody looked in your bladder? And if they did, what did they see? Do you have hundreds lesions?
Do you have a red inflamed bladder? Or do you have a perfectly normal bladder?
Let's first question for you if you were on the phone with me. That's one of the very first things I would ask you.
Kathy says, "I have pain now when I sit too long. I've had this a long time, but when I fell on my butt, when I fell on my butt, I don't know why it surfaced again. Probably because you've been sitting a lot. When you sit a lot, you have you are basically compressing muscles and nerves in your tush. you are. This is why I sit on a waffle cushion all the time. I mean, I have a pudendal neuralgia in my left butt cheek. My left butt cheek vibrates. If I sit too long, I get this like this. And thankfully, it doesn't hurt, but it's really, really annoying. And that tells me I've been sitting too long. And so, that's when I have to get up and move around and get my stop putting pressure on that nerve.
Okay. So, Nina, again, if you're still here, can you tell us if they've looked in your bladder, and what did they see?
Dolphin said, "You had to step away for a second. It was major surgery 10 weeks ago, and I feel so much better." I'm so glad, hun. I'm so glad you're better.
Mesh is brutal.
Absolutely brutal.
Um, Ann says, "Me too. I always wanted five children after being an only child." Dianne says, "What are my thoughts on marshmallow root for flares?" Okay, marshmallow root has a soothing effect to it. It can soothe the bladder. It can soothe the urethra. It can do that. Um, but it's not a long-term viable strategy that's going to help tissue heal. It's and this, and this is exactly what I say about aloe. If you have a sunburn, you can put aloe on a sunburn and it will feel good. So, aloe in the bladder will feel good.
But there is no single research study that has been published in any credible medical journal that shows that aloe fixes anything. It just keeps your symptoms a little bit at bay. And in the end, we don't just want to take something for the rest of our lives. We want to find the underlying problem and fix the underlying problem so you're not having symptoms in the first place. This is exactly why we phenotype.
Right. And so marshmallow um about 50% of the people who try marshmallow like it about 50% of the people who try it report that it irritates them and gives them flares. So it's one of those things where you can try a little bit. I'm currently sold out in the Icy Network office. They have been sold out for some time at the distributor. Um uh it's I don't see any harm with it at all, but I just wouldn't put a lot of money into it. I want to know more about what could be causing your symptoms in the first place if that makes sense.
Hi Kay, nice to see you girl. Very very very very Oh, good to see you again. It is a gorgeous Sunday. So uh so what have I been doing this week?
Number one, we're building a new ICN food app and we're getting ready to stage that.
So that's quite good. So you have another app to put on your phone when you're shopping and going out to eat to pick foods that won't irritate your bladder. Um, we are working on moving our store to another e-commerce platform because it turns out the gentle the tragically the gentleman that we had worked with for many years with our store passed away. Yikes.
Good guy. Good man. Very very good man.
He just dropped.
life just throws curves at you. Um, and I obviously I'm very very grateful for all of the help that he gave us over the years. Wonderful, wonderful man. Um, and I'm going to give you a quick preview of the cover of our new magazine.
This is the the the titles aren't right because we do the titles last, but this is the new cover of the spring I see Optimus magazine. And this is my second round of revisions from the type setter.
And just to give you a little bit of and give you I'll give you a little tease on what's in here. Um I always have an affirmation page. So here's our affirmation page.
Um, and this one says, uh, dance, sing, paint, write, build, or even break something. Find a way to release that which cannot be spoken because you know it builds up. Our frustration, our stress, our anger definitely builds up.
You can't let it circle in your soul.
You got to have a way to get it out.
Whether it is walking, whether it is drawing, whether it is going and screaming when a train goes by, whether it's hitting pillows, you got to have a way to release some of that stress. It's very important for your long-term health.
Um, we are uh doing for my editorial, we're doing something on Mother's Day for all the moms that helped us because I'll tell you, my mom was a champ.
When I think of all the times because remember my symptoms started when I was 13 years old.
I did not drive back then. My mom took me to every appointment.
Every single appointment. And and you couldn't ask for anybody better at a doctor's office or here in the ER. She just sat there so kind and comfortable.
She was a presence, a warmth, a hug. Um, she just, you knew you were safe when she was there and I lost her two years ago. It will be two years ago next month. And um, it just makes me think about the quiet strength that our moms who care for us have. So, we have a nice editorial on for moms because their expectations and their load is heavy, let me tell you.
Uh we have a new article with the latest information on Elmeron causing retinal damage if you get it in bladder installations. So it's not just oral now it is from bladder installations and also injections for people who have had pentocin injections uh for arthritis. So Elmeron is the brand name. Pentocin polyulfate is a generic. Elmeron is the only FDA approved oral medication for IC. It has now been strongly associated with retinal disease, blindness, and inflammatory bowel disease. The other thing that is almost done on this computer right here is our new patient registry. It's just I'm just doing the last bit of beta testing on that.
And I want thousands of patients to fill it out because we got to get this information to the FDA.
All right. What else do I have in here?
uh we are talking about post UTI hypers sensitivity syndrome. So for for those of you who you your symptoms started after an infection, you 100% had an infection. There's no doubt about that. A culture found the infection. You did the antibiotics. The infection is now gone. The bacteria is now gone, but your symptoms are still here. Why? Now there are people online who are going to say you still have the infection. And that is always possible.
The infections right now are very very uh drugresistant and so you can absolutely have a more difficult infection. But if your culture comes back negative but you're still struggling, we now can explain that with some new research that came out that that focus on how does the bladder heal after an infection? Because when you have a bladder infection, you've got bacteria that have here. Hold on. Let me grab this.
So you have bacteria that have burrowed into these cells, right? And so the bacteria is going to burrow into one of these urethelial cells. It very quickly turns it into a bacteria factory. So it starts filling up with bacteria. Then it ruptures open and releases all the new bacteria to infect more cells. And so what happens is this one will be infected, then this one will be infected, then this one will be infected, then this one will be infected. And before you know it, you've got a lot of damage down here. You got a lot of damage to tissue. And of course, what a lot of people don't understand is that these are the largest single cells in the human body. Okay? These do not repair overnight. Man, it takes two weeks for one of these cells to be repaired or for for the new cell to replace it because once the cell is damaged, it gets sloughed off. It takes two weeks for the stem cell to grow and adapt and change shape and become the next eurothelial cell, right? So, you know, you don't necessarily feel immediately better after an infection.
There's a lot of damage that has to happen. A lot has to be repaired. And so we have a new study now that talks very specifically about and I can read this to you. Researchers studying patients with lingering symptoms after UTI have discovered that the bladder itself undergoes significant changes during and after infection. So during the infection the body fights hard it the infected cells are shed the tissue becomes inflamed and the nerves near that tissue are damaged. Um and so we have a quote here from Dr. Byron Hayes. Typically during every bout of a UTI epithelial cells laden with bacteria are sufficient discretion occurs of nearby nerves. These events trigger, and here's the important part, a rapid repair program in the damaged bladder involving a massive regrowth of the destroyed nerve cells.
Sounds like a good thing, right?
Actually, too many nerves grow back and those nerves often become very, very sensitive.
So this means that the bladder starts sending pain and urgency signals even when there's no infection present. So this is a very very good new study what we call a basic bladder study. Basic bladder studies are when researchers are just trying to figure out how the bladder operates.
And so that's critical. It's like okay how does the bladder repair itself after a really bad infection? Tanya says here, "Hello, Tanya. I love your magazines. I save everyone to go back to for a reference."
Yeah, man. Listen, I gotta tell you how many years has been.
It's been a long time. I think we are in our I mean, 20 I mean, we've been doing this magazine um volume 24 years.
Yikes.
How do I get old? Our next article is unraveling the mysteries of Nocturia and this is something that I needed a refresher on and that is you know we always get patients call oh Gina says symptom free week first since February. Yay. Yay. Gina what do you think what do you think helped you with get this get your bladder calmed down?
Love hearing good stories.
So, when people call the IC network office and they're asking for help, it's really interesting how your symptoms prevent present because there are some patients who 24 hours a day produce massive amounts of urine, like way more than they're drinking. And their question is, where is this urine coming from?
And if that urine is either coming from that person drinking way too much fluid or that's actually a sign of diabetes.
So if you find yourself urinating all the time, large volumes of fluid day and night, we want to check and make sure that you're not pre-diabetic or diabetic. That's one of the first things we're going to look at. And then one of the next things we uh that happens is there are patients who you're perfectly fine during the day, perfectly fine. But at night you pee like a horse, like all night long. Like where is this urine coming from? You wake up the next morning and all day you're good. And then at night again, bam, all this urine's coming. So what is that? This is called nocturnal polyurea and this is usually coming from the legs.
The legs.
So if you sit for a long period of time, what happens is the valves in your vein uh start to fail and fluid starts to collect in your feet and in your ankles. So when you take your socks off, do you have indentations?
That's a sign that you're holding fluid in your legs.
But during the day, gravity's at work, man. All that fluid is down down below.
You could have one and a half lers of fluid sitting there in your legs and you have no clue other than the fact that the the top of your foot might be swollen and or your or socks are just very very uncomfortable. Uh Donna says edema. Yeah, exactly. Exactly. But what happens when you lay down?
What happens when you lay down? Guess what? All that fluid gets rapidly resorbed in your body. And an hour later, you got a full bladder because that is your body releasing all the fluid that got stored in your legs. And so that's an example of somebody who legit is going to have a lot of fluid at night that they didn't drink that's going to keep them up. Now, another thing that can cause that is actually very congestive heart failure that your heart's struggling to pump and to move blood along. So, so whenever you go to the doctor and they check your ankle and or they touch to see if there's an indentation, they're checking for edema. So, that's one of the things we're going to look for that.
So this is also where diet is certainly going to play a role in this. If you are eating a lot of salt, salt increases fluid retention.
And and and guys, you know, listen, here's the deal. When you're young, your body can compensate, but if you're older, your body is not going to be able to compensate from eating a bag of chips anymore.
And you know, it's hysterical. I got to say this is really hysterical because obviously I have no shame and I will talk about all my stuff no problem at all.
One of the last times I went to my primary care provider where I got diagnosed with high blood pressure for the first time. I mean it was high.
It's 150 over 100. And that night I ate a bag of potato chips like at midnight.
You know talk about an idiot. I just I didn't, you know, I was stress eating because I was caring for my very elderly parents and I was just snacking a lot on a lot of salty stuff. And when you eat a lot of salt, that's going to help that your body's going to start retaining that fluid and that's going to eventually come out at night. But another thing that can cause that is being a diabetic or pre-diabetic that if you've got a lot of sugar in your bloodstream, your kidneys recognize the sugar is there.
It's now got to get rid of the sugar and it draws water from the rest of your body to release all that sugar just like it does with salt too. The celibate um what's the right word? Osmotic osmotic something like that. Anyway, so whether it's high salt intake or high sugar intake, that also can keep you up at night.
And last but not least, alcohol.
So, here's what's so interesting about alcohol is, you know, you're thinking, you're thinking, well, of course, I'm going to sleep better with alcohol because it is a it is a it can calm you down and all that sort of stuff. But alcohol also turns off what's it what's it? Vasopressin. And vasopressin is the hormone that normally suppresses your need to urinate at night. And so when you drink alcohol, you literally turning your your kidneys on 100% and that's also going to produce produce a lot of urine. So when we're trying to unravel the mysteries of why you're peeing a lot at night, we have to consider the volume when it's happening. And of course, listen, if you've got a damaged bladder wall and you're drinking a coffee every day, of course you're going to be getting up a lot because you're just profoundly irritating your bladder wall.
Nocturia is pretty easy to figure out when you when you know the right questions to ask.
Okay, David, hold that question. Can you guys hold those questions? Um, we have an article on the new adjusted blackbox warning, the removal of blackbox warning for estrogen.
Um, we have this is so this probably one of my most interesting cases of this year. So I had a patient call who absolutely had a confirmed UTI and the pathogen it wasn't EC coli it wasn't enerocus it wasn't stafloccus you know what it was pink mold pink mold you know this is the mold that grows on soap scum in your bathroom and it turns out even though They call it pink mold. It's actually a bacteria called seratia marcusens.
And seratia marcusens is actually a very very dangerous bacteria if it gets inside of your body.
Uh so for example, if you have soap on on a soap tray and you've got pink mold on the soap tray and you then wash your hands and you've got a cut on your hands, you have now introduce seratio directly into your bloodstream. Seratia is really well known now in patients who become septic. If you take a bath, you've taken a bath in your bathtub and you have pink mold growing in your bathtub, you are now potentially taking pink mold into any wounds on your skin that the bath water is touching and it's going into your urethra. So, pink mold is actually well known to be associated with UTI. Learn something new every day.
I didn't know that. That was fascinating.
So um but one of the tragedies of pink mold is that it is really well known for nocomial infections. It grows in healthc care settings. It will grow on a catheter. So if you've got pink mold growing on a catheter and you stick that catheter into your bladder, you've got now got pink mold in your bladder. They have found pink mold growing on artificial heart valves in the body.
Like there'll be a a a big chunk of mold actually growing on the valve itself.
And sadly, it's actually affected a bunch of neonatal intensive care units.
Um and so I go through some of this research and this is domestic and international. It affects children. it affects adults. And so the moral of this story is, you know, like I read this, I'm like like reading this article going, "This is scary." I go running through my house to all the sinks. I don't use soap. I don't like bars of soap. They get really messy. Um, and so I have pump soap. I have this really great organic pump soap that I use in every bathroom.
But I had pink mold growing above the soap container in my shower, the shower that I used every day.
And you know, it is hard to kill. And I sprayed that sucker with u a bunch of different bathroom cleaners. Didn't work. I sprayed it with Clorox. It didn't work. And then finally, I let Clorox I think I let Ajax sit on it all night long. And then I had a really hard scrub brush and I got rid of my pink mold that way. So I want you to go into your bathrooms and I want to make sure that and your kitchen sink anywhere there's water and soap and if you see pink mold, put some gloves on, put a mask on, clean that sucker. Let's get rid of that in your house. The last thing you need is this weird random infection that can be deadly.
I mean, patients who have had uh pink mold infections, at least in one study, were at greater risk of death. So, yikes, my friends. Yikes.
Uh we have a really good article on uh the hidden mental load of IC because we got to be real here. This is not easy. This affects our lives physically, mentally, and emotional emotionally.
Well, physically, and emotionally mostly. and that living with IC and living with pain and having to compensate all of our daily activities based upon restroom access and can we eat that food, can we not eat that food, can we go to that restaurant, can we not go to that restaurant, can I go to the movies or not? Man, you have never worked harder than you are right now trying to live and do normal things when you have interstial cyitis and pelvic pain. This is hard work and We have to protect ourselves. We have to protect our emotions and and more importantly, we have to reward ourselves. I believe in reward therapy.
Like, man, I went and had my teeth cleaned last week. I do not like having my teeth cleaned.
I have put $30,000 into these teeth in the last 10 years. You know why? Because when I was a kid, my childhood dentist hollowed out all of our teeth and put silver fillings in there.
And all the teeth broke, all of them. I mean, I have root canals and crowns throughout my mouth. I mean, I think I have 12 root canals and crowns.
It's so stressful and painful.
Although, it's not painful now, but it was back then. And so, I don't like going to the dentist.
I don't. And then they want me to they want to take my blood pressure, and I don't like taking my blood pressure either. So it's like my two worst uncomfortable things. And so I did it.
My blood pressure is 138 over 80 86 and and that's white coat. So what that means to my blood pressure is probably 130 over 82. So win baby. That was a win. And I just sat there and I breathed through it and I just said to myself, you're going to do it. This is a piece of cake. You've done this many times before. There's no reason to get upset about this. There's no reason to assume anything bad's going to happen. And most importantly, reward yourself afterwards.
When you do something that's personally stressful, it's okay to stop at the yogurt place and get a frozen yogurt, which is what I did. Reward yourself when you do something difficult. It's okay to do that.
Okay. What else do we have? We have an article on lupus cyitis for patients who have lupus often uh are diagnosed with interstitial cyitis but they don't respond to IC therapy. Why?
Because they don't have a bladder wall problem that's all related to their immune system.
Let's see. Man, this is a big I got lots of articles in this sucker. I got a self-help tip on how to avoid an icy flare when you're doing stuff at home.
We have an article on weight loss, going slow with weight loss and also some springtime springtime meal ideas, including making spring pizza with that tomato sauce, including the Jennifer Aniston salad, pasta prima vera, and little mini cheesecakes friendly. So anyway, that's what I've been doing this week. Busy girl. Busy, busy, busy girl.
Uh, Dolphin says here on YouTube, "The bladder definitely had a lot of nerves with the mesh erosion. I never did get a UTI, but I had urgency and nerve pain.
Urologist started me on vaginal estrogen." Good.
Dolphin said, "The cream helped keep my vaginal tissue and bladder while strong.
The infection was attacking my tailbone." Yikes, girl.
Oh, it's from the mesh. Yikes.
Okay.
Kaen says, "No more UTI." Yeah, baby.
Yay. David says, "When you retire, will the magazine still get printed?" I don't know. We'll see.
We'll see.
I mean, you know, we just we just have to be financially sol, you know, solvent, you know. I I can't just give stuff away. And that's the because it it takes it takes money to print this stuff, you know? I mean, and just our printing bill alone is probably $100,000 a year for all the books and stuff that we print. So, um, we just need for for us to be able to do stuff, we just need members, you know, become a member of the IC network.
$25 a year, you get the magazine, you get a big member page, you get all sorts of stuff. $50 a year, we we mail it to you. Uh, and again, I've got a couple more books that we're working on, too, that will be this summer once I finish the magazine.
And most importantly, we just have to get our store moved to this new software. That's the big project for the next two months.
Gina said, "You had four installations using and using urbel seemed to take away the burning mist insulation this week. I couldn't do it, but I haven't needed any masks." Good.
Good. So, Urabel and Euroblue and Euro I think it's a DS are what we call methnamine products.
Mththenamine um that is a product that is typically given to somebody who struggles with UTI because methnabine is metabolized into formaldahhide in urine and it's hard for bacteria to grow in in a formaldahhide environment.
And so they so it can help prevent infections. But of course formaldahhide is a carcinogen. And so they don't really want you to do these products for long periods of time that they're kind of shortterm. Uh it's not it's not really a viable long-term yearsong strategy because it is essentially managing the symptoms but it's not repairing anything. And again, we always want to try to repair. And if you're struggling with recurring UTI, there are two things that we have to look at because we have to figure out why is your bladder vulnerable to UTI in the first place. And the first thing we're going to consider is your age and estrogen levels because if you're in estrogen atrophy, you're going to be a lot more vulnerable to infection and bacterial vaginosis. The second thing we have to consider is your the health of your immune system because maybe there's something about your immune system that is making it difficult for your body to fight off infection.
So generally that would be IGG. There's a condition called CID, not COVID, it's called CVID and that's called common variable immune deficiency.
And basically what that means is that as we get older sometimes our immune system just starts to fail. It just loses its strength. And when it loses its strength, it cannot fight off infection as well. And so I always tell patients who get a lot of infections to ask their doctor to do an IGG test and let's just see where their immunogloabbulin levels are to see if that's one reason why they may be struggling with recurring infection.
Tanya said, "That's me more at night.
Interesting. I don't have leg swelling yet, but I was diagnosed with bilateral Venus insufficiency."
There you go. and you didn't know about sugar intake and urination. I didn't either. You know, I I just found this really fabulous lecture online and I just I just went into it whole hog because I just realized this is something that I I was not strong at.
And so now I consider myself much more informed. You got to study, baby.
You know, here's the thing is God didn't give us the skills to handle the handle I see when we were born. We got to go learn some of those skills. We got to learn about stuff. We got to read about stuff. And that's really hard right now because people don't want to read. They want they want videos and they don't just In fact, oh god, what was I reading? I was reading feedback like this really good video that I was watching like a 20 minute video on on something like really intricate related to our health. And somebody said, "Great video. Wish it were I wish it were much shorter and funny." It's like come on, you know, you got to health isn't entertainment.
Health, we have to take the time to read, learn, educate so that we can make really good decisions about what's happening with our body, right? I mean, it just is what it is.
I'm just checking to see if I missed questions.
All right.
All right. So, what is what else is going on? So, I'm just waiting for infection. I mean, I'm waiting for questions, guys. Give me questions. I double dog dare you to try to embarrass me. Ask me the most embarrassing question you can think of. I love those questions.
Okay, here. Hold on a sec.
Kaen said that's why she's afraid to take a bath because of the pink mold.
Well, girl, if you clean your bathtub, you just got to clean your bathtub.
I you know, I because you can see it. You I mean, it's pretty easy to see. And normally soap scum is not at the bottom of your bathtub unless you take baths and you don't clean it afterwards. So just clean your bath oven. It might be fine. Tanya said I have all root canals. Jenna said mostly due to taking phosphomax in my 40s. Now I'm in my study in my 70s with so many crown. I you know and like da we are in tooth preservation mode. I was actually at our grocery store and I was looking at the summer candy and I was just having fond memories of what I used to eat as a kid. And one of my favorite candy bars was a big hunk. And a big hunk is like this long and like this wide. And it's like this white taffy with nuts in it. Very, very chewy. And it's like, "Oh, hell no.
I'm trying to I don't want to put another $10,000 into this mouth." The thing is is the root canal is going to be 1,500 or 2,000 depending on who you go to, and then the crown's going to be another 1,500. And then, God forbid, you lose it and you have to have it, you have to have your tooth pulled. So then you choose, am I just gonna, which I had to do right here a couple years ago. I was wearing a flipper because I lost I lost two teeth after a dental cleaning where a new dental hygienist used that super sonic water that pick thing and she did it along the roots and she broke two teeth. She legit broke two teeth.
And I know people say that's not possible. Hey man, I was in agony that night. Two teeth were broken and there was a line across. She didn't set up the equipment correctly.
And I had to wear I had to get implants.
Uh and I had to wear a flipper here for two years. So when I was doing these meetings, I actually had a flipper. This is the implant now. You can see they're smaller.
So weird. So implants are expensive.
Bone grafts are expensive.
All right. Dolphin said, "The cream helped keep my vaginal tissue and bladder while strong. The vaginal estrogen is safe and effective. What is the correct link?" Um, honey, that's going to be in our magazine. I don't have a link for it yet.
Do not I I hopefully will done by the be done by the end of uh next week. It'll probably be done by Wednesday.
Okay, Kaine said, "I must be flaring with IC or a vulvadenia because I'm still in pain and 10 pain 10 out of 10 pain when I pee." So, Kaen, are you straining to empty your bladder? Are you pushing? Because if you're pushing, you could be causing a pelvic floor flare.
The second thing we want to consider is the health of your urethra.
Um, maybe you got a lot of urethal burning a or urethral.
I mean, you had a pretty wicked infection. So, the question here is where was that infection? Was it in the bladder? Was it in the urethra?
It's tricky, you know, and that's where I mean the one I I I have one really mo powerful aloe success story, but it wasn't with a pill. It was with an aloe. It was with George's aloe drink. So, we had a young mother who had a a young boy who who was just screaming whenever he peed. And of course, he was very very young. He was like four years old. Could barely talk.
He could barely verbalize it. And he kept saying to his mom, "My pee pee hurts. My pee pee hurts." And whenever he tried to pee, he would just start screaming.
And obviously they went to the doctor.
They were doing all these workups trying to figure out what was going on. Um, and she ended up giving him a little bit of George's aloe, which is a liquid aloe, and that turned off all the urethal burning. So, she was she wanted to share that. That was years ago. and and and and you know, I mean, that brings up a really important thing that you guys might not see that I see and that is when I see affects somebody who is disabled in some way or somebody who's very old or somebody who's very young who cannot verbalize it or in many cases I've worked with moms whose children have cerebral pulsy and they can't walk and they can't talk and so the the only way that the mom can tell they're hurting is when they squerm in bed. Um, and finding a way to I mean, they've been diagnosed with IC.
It's definitely urethral pain or it's bladder pain. And how do we care for these patients who just they're not mobile, they're bedbound?
It's not like you can get them to the doctor to have a bladder installation.
It's it's really difficult and patients that are in rehab centers and nursing homes. That's like I had a a I had a 92 year old call me now. Her son called me.
My mom is in a nursing home and she is in agony and crying every day and she has IC and she says her bladder is killing her every day and nobody's listening to her at all. Can you help?
And so then I uh I talked to her. He got her on the phone and I asked her what was going on and she said the only thing they give me to drink in the morning is cranberry juice and coffee. That's it. They don't I don't even get water.
All they do is they give me cranberry juice and coffee.
And here you've got a woman who's in her 90s who's in massive estrogen atrophy who through absolute naivity of the the people running the nursing home who were giving her horrific things to drink. And of course what do they do typically for these patients who after breakfast they start squirming? They just sedate them.
So now you've got patients who are massively stated, sedated, squirming in pain, really really uncomfortable because they don't understand the role of aging in estrogen and how that affects the bladder. And so, uh, I ended up calling the dietitian at the nursing home and had a long talk with her and I presented this big packet of information and said, "Listen, you got a patient with interstitial cyitis and everything you giving her, you're giving her is only going to make it worse and that's why she's in agony." And this dietitian had no knowledge of IC at all. No knowledge of IC.
And um uh it turned out they completely adjusted her food intake based upon the info that I gave them. She got massively better and then she died a year or two later just of old age and her son called me to let me know that she had left me a bequest her will because I was the only one who tried to help her.
And it was a little it was a little $5,000 request.
That's the only time that's ever happened. Um, so anyway, diet matters. Okay, hold on.
Gina said she uh recently started estrogen cream. You haven't had a UTI in a few years. Excellent. Tanya said, "I have immune deficiency, very low IGG, but I don't get many infections. Thank God. I've had this low neutrfil since I was 30." Yeah.
Um Tanya says, "Can you explain the icy belly? Is this really true and does it go away? I think it's from estrogen atrophy and getting old with menopause."
No, they're two separate things. Fun. So So um what's baffles so many patients, especially younger patients, is that you can wake up with a flat belly and four hours later look nine months pregnant or eight months pregnant. And you're like going, "Where the hell did this come from?
What is this belly like? Where did it come from? The IC belly is incredibly common in patients of all ages, men and women. And um uh Dr. Thea Heredites in a a lecture he did with us years and years ago uh said that that was from inflammation. That that's kind of how the body reacts to severe inflammation. Uh don't ask me to explain the intricacies of it. I don't know the intricacies of it. But you know, here's one of our top ICU researchers saying that's inflammation.
But the other thing, Tanya, is that as we get older, especially as menopause hits in women, you develop an inch of fat or two inches of fat on your belly that's related entirely to aging.
And what's so interesting here is that that's kind of pre-engineered into the female body because when our ovaries stop working, our body still tries to save estrogen. And the way it does that is it saves estrogen in fat.
And so that belly fat is widely considered kind of a reservoir for small amounts of estrogen. I don't know. You know, there it is.
I I didn't have that five years ago. I do not like having belly fat. It's very hard to get rid of this this estrog age related belly fat. I'm telling you right now. And my diet is so freaking clean. I don't eat sugar. I don't eat saturated fat. I don't drink. I don't eat salt. I mean, I pretty much just eat yesterday.
All I had was chicken, vegetables, and I had um um unsalted organic tortilla chips.
I mean, I don't really hardly even eat bread anymore now either, which is crazy.
Uh Dolphin says, "So many women die of UTI sepsis in nursing homes." Yeah, you know, nursing homes are um really really heartbreaking because you know a hundred years ago family took care of family and it was your your job to take care of family. This is why I cared for my elderly parents. It would never have dawned on me to ship them off to a nursing home when they turned 80 cuz they were still all there.
You know, they were all there. I they we had no dementia going on at all. My dad lived to over a hundred. Um but once you hit that nursing home, you're you're the standard of care is very very poor. Um God forbid you not be you be immobile and need to go to the bathroom. You're gonna sit there in your pee and your poop for hours potentially. That's why if anybody is has anybody who's going into a nursing home or even a rehab facility for a week or two, you go see them every single day. You have to check on their care every single day because you don't know what they're what they're missing and not missing. My I have a friend who um whose husband had um what did he have? He had spinal surgery and as part of that spinal he ended up having um a couple of really bad heart attacks and he ended up in rehab um because she couldn't bring him home.
He he couldn't walk. Um it was really dire and he did eventually pass away.
And I told her, I said, "You got to be there every day." And you know, she was shocked at what they missed. I mean, she could tell when he'd had a stroke. I mean, and it's like, "Hey guys, how could you miss this? His half of his face is drooping. Seriously, call an ambulance. We need to go to the hospital."
So, I I hope that I pass in my sleep before I need a nursing home because that's probably the biggest fear of getting older.
It's certainly the biggest fear of my parents. That's for sure.
And the only time we ever even considered it was at the very very end with my mom because she couldn't she couldn't walk.
And um you know she was just really struggling and we finally got to that point with her and I asked my dad I said would you go with her? He goes no. I was shocked. You know I always kind of assumed when we got to that point that they would go together so they could be together and and he actually said no. He couldn't leave his home but she couldn't leave her home either. So, Kaine said, "It's really bad when I need to go and then it burns internally and externally when I pee." I mean, that really speaks to the quality and health of your skin. And and girl, man, you should be using vulva balm or coconut oil down there. That's going to put a barrier over your skin so urine's not irritating it. You definitely need to rush to the bathroom clenching my fist to make the pain a little easier. And that right and that's how your grandfather died. I told the nurses that it's urine. I wanted a urologist here to get rid of a UTI. They sent him to the rehab facility and that's when he went into septic shock.
Right.
Shockingly common.
Shockingly common.
Um, what else is going on here? Let's see here.
Uh, we have um the big American Urology Association meeting. Oo, guys, hold on.
Let Let's see if they put up the abstract. Let's see what new research got put up for AUA next month. Here, hold on a sec. Let me take a look.
Let's see. So, aua2026.org is the American Urology Association and this is the biggest meeting of the year.
20 25,000 urologists come and okay, that didn't work. Um, and they take classes and all sorts of urology things from prostate cancer to IC and etc. And this is where we have our biggest research discussion about IC. And it's like a big science fair where urologists have big posters on the wall or researchers have big posters on the wall and you can walk around and look at all the new research.
All right. So let me just let me take a look here and let's just see if we got anything. So anything interesting the meeting is going to be in Washington DC on May 15th to 18th. I am not going. I refuse to step foot in Washington right now.
Okay.
All right. Abstracts.
Let's see.
Now I I know I got to see them before.
How do I find these?
All right, hold on. They hid them. Maybe because I need to log in.
H.
Okay, hold on a sec because I went through these like a month ago with you guys because we had the titles. We just didn't have the published data.
What am I missing here?
Let me go to the program. Let me view the program.
Oo, hold on.
Okay. So it is so and they always do this with IC. We get the worst time first day 7 to 9 a.m. Oh my god. But the wonderful Robert Moldwin uh along with um a doctor from Brazil, Mauricioto and another doctor from Brazil Trusy are running the IC thing.
Okay. Okay. I see all the new research.
So, the question is, okay, hold on.
Did they actually add it?
Okay. What is that? See all this new technology here? What are they doing here on this website?
There's a camera. What does that mean?
Okay, so just to kind of summarize a little bit, we have a new research study on Hunter's lesion. They want to know if Hunter's lesions are a B celldriven autoimmune disease. I think that we can argue that for a in a small population of patients, it probably is. Not in all patients, but in some.
Here is the first cohort study comparing the fullration of biopsied hunter lesions to bladder biopsy of non hunter lesions. Okay, that's just kind of silly.
um because we know when you biopsy a lesion, there's massive inflammation.
Whereas, if you biopsy my bladder, there's no inflammation at all. Even though we both have quote unquote intersticial cyitis, that's just inflammation as part of uh hunter's lesions.
Oh, here's one. Urinary proteins stratifi stratify severe and non severe patient phenotypes.
Okay, that's going to be interesting because I was just working with patient no that was somebody who's in this meeting right now who has significant amount of protein in her urine. I won't say who.
You know who you are.
Integration of single cell and spatial trans transcripttoic analyses reveals pathogenic mechanisms in IC.
That's from Japan. H we'll have to see what that is.
Another study from Japan. Corial conffocal microscopy is a diagnostic tool for detecting small fiber polyuropathy in patients with chronic pelvic pain syndrome. Okay, we know we know that small fiber polyuropathy is quite common in patients with widespread pain. I have it myself. That just means that the nerves the tiny nerves in the skin have become inflamed and they get very sensitive and prickly and stuff like that.
Antler stem cell exosomes amiliarate IC via mitochondrial component transfer.
You just want therapeutic effect efficacy and radio frequency therapy in patients with chronic pelvic pain. Okay, that might be interesting. Here's a here's one to remove, reconstruct, or retain evaluating the surgical management of the native bladder in patients with IV.
Okay.
Are there urologic consequences to medi medicinal ketamine? A five-year multi-institutional analysis. The answer is hell yes.
Ketamine acts as an industrial solvent to the bladder.
Definitely going to injure the bladder.
elevated psychiatric comorbidity and polygenic risk for depression. And I think, well, hell, of course. Come on.
You got pain. Of course, you're gonna be frustrated, especially if you don't know why the pain's happening and you're not, you don't have good treatment.
Depression is perfectly a perfectly normal response to being diagnosed with a painful condition. We just don't want it to linger. We got to work on it and address it.
Parurethal injection of hyaluronic acid for the treatment of recurring postcoidal cyitis. That's interesting.
Injecting hyaluronic into the hyaluronic acid into the bladder for honeymoon cyitis.
Analysis of novel genetic factors contributing to LL37 resistance in E.coli. H interesting.
And to give you a clue, right now only six doctors are registered to attend the IC session, but there'll probably be 80 to 100 doctors in there eventually.
Yeah. All right.
Um, just out of curiosity, let's And I know you guys have questions, so just bear with me here.
Um let's see what they're doing for pelvic pain.
Okay, they have two classes. Uh 10 must knows for pelvic pain to always do and never miss. Five experts will impart what they want learners to always catch and never miss in the approach to pelvic pain, including one of my friend to oh Ken Peters, one of our best IC researchers and Elise Day who is definitely in the next generation of one of the young guns working with IC who's very man she is wonderful. Uh she's at Albany Medical Center in Albany, New York. Um, interesting.
And then there's another class. Okay.
When is that one? May 15th, 1:30 1:30 to 3:30.
That would be cool to go to. Um, and then male chronic pelvic pain and scrotal pain, common clinical scenarios, AUA guideline. Okay, that's interesting, too.
Sorry, I get my geek on.
That's geeking out.
Elise Day, E L I S E, and last name Day D E. Okay, so let me come back to your question. Sorry, you guys got to bear with me because I geek out. Uh Valerie says, "Do you think acupressure can help with IC IC symptoms?" It's worth trying, but Valerie, we have to know what's driving those symptoms. So So is acupressure going to help estrogen atrophy? No. Is acupressure going to help tight pelvic floor muscles? No.
Not. It's not going to help pelvic floor muscles as as much as physical therapy would. Would acupressure help superficial muscle tension? Maybe a little neuroinflammation?
Maybe. It might. It might.
But you don't want to put all your all your, you know, I wouldn't put all your treatment in the acupressure area. We have to phenotype you. You got to be phenotype. We need to understand what's driving those symptoms in the first place. Valerie says, "Why does it burn when we pee inside and out?" Okay, Valerie, that's actually not a symptom of interstitial cyitis. If you have burning on the outside while you're peeing, that's actually estrogen atrophy of the vulva.
What that means is that for some reason, I mean, think about think about the the the bladder and the urethra for a moment. Their job is to hold toxic waste, right? Because urine is body waste. Urine contains ammonia and ura and all sorts of other bad things. So, how does the bladder protect itself from the irritants in urine? Well, it protects itself with a really thick coating of mucus.
And so, this is kind of a three-dimensional picture of what the bladder wall, what these tissues look like. There's a layer of mucus, and yes, it's not really blue. This is just for educational purposes, but there's a layer of mucus which prevents the irritants in urine from reaching the cells and the nerves, right?
But if you lose that mucus, what happens now? We've got all these irritants down where they're not supposed to be.
Ammonia is down here. UA is down here.
Bacteria is down here. That's where the burning's coming from.
So you can have estrogen atrophy in your urethra that would cause burning. But if it's burning on the outside, that's estrogen atrophy on the vulva.
Uh we call that urine burn. If your urine feels hot as it's coming out of you, like it's burning your skin, it's not burning your skin. What that means is that your vulva can't protect itself from the irritants in urine because it is atrophied. And it can be it can be atrophy, it can be birth control, it can breed Lupron. If you're taking Lupron to suppress endometriosis, if you're on an estrogen suppressor for breast cancer, anything that suppresses estrogen is going to affect your skin health. The treatment for that is using topical estrogen. that when you give that skin estrogen, it immediately plumps up and starts to make mucus again.
So, um, urine burn is a classic symptom of estrogen atrophy. Hun, hold on a second. Darla says, "I want to go do water aerobics, but I'm afraid of a flare due to chlorine. Can you use coconut oil?" Yeah, you can use coconut oil, but it's a little it's pretty messy. And I would be horrified if somebody said, "Gee, the water tastes like coconut.
I I I don't know. I can I can just kind of speaking as somebody who loved to who used to love to swim, you know, you do get pool water is pool water. Um vulva balm I think would be a much better choice than coconut oil. Number one, it's not as messy, doesn't soak through. Um and this is an organic olive oil, avocado oil, and seabbuckthorn oil. And so vulva balm is definitely uh it's what I use.
Uh, I'll show it to you.
So, it comes in a tub. This tub, listen, I bought this tub probably two years ago, and I haven't even used half of it yet. So, this is a good long-term investment.
So you can see it kind of looks it's it's a it's like a really really really light oil and it's as close to the natural texture of your mucus of anything out there. And so I would use some fulva balm down there if you're going to go swimming.
And you can get this right in the IC network shop. It's under feminine hygiene. We sell a ton of this and again I use it myself.
Tanya says, "Do you have an app now that I'm missing? I mostly view the site via computer. Anything to download on the phone?" Not yet. I did have two apps. We built our diet app uh seven, eight years ago. Um and it was just back when apps were very expensive. It cost me $20,000 to build and every time we needed to update it, it was another $10 to $20,000. I'm just like, I can't afford this because it was free.
And so I shut it down, baby. I shut that sucker down. Um and uh we also had a Flare app. Um and and apps are so expensive to maintain. You have to have a lot of users to make it financially vi financially viable. and we just didn't have enough people using it. Um, however, technology has changed. Uh, now we have AI and we are now building a new IC diet app. We're testing it now. Uh, that for a fraction of what I used to pay and if that if I'm happy with that and that seems to be working, we will have a new ICN diet app.
Uh Valerie says, "What does it mean if you have protein in your urine?" Protein in your urine is a sign that your kidneys are struggling in some way. And so um uh you here, you know what? Let's see.
My memory on this is because this is not my area of expertise. So let me let me get the good information.
Kaen, you can you can talk about this.
So, it's damage to the kidney filtering units which allows protein to leak from the blood. Common stress and can include diabetes, high blood pressure, and chronic kidney disease. It can also be caused temporarily by dehydration, intense exercise, high fever, and stress.
A lot of people don't know that the singer Tina Turner passed away uh from kidney disease. She was in dialysis the last couple of years of her life uh over in Switzerland. And you know Tina Turner, the rock goddess, you oh my god, I just love listening to her.
Her concerts were so amazing. Um, and she gave an interview and she said, "I didn't know that high blood pressure could damage my kidneys." And she had untreated high blood pressure for years and eventually they just damaged her kidneys to the point that her kidneys stopped working and she was in dialysis when she passed away of severe kidney disease. So if you got high blood pressure, you got to understand it has consequences.
Kaen said, "I forgot to say I had E.
coli staff infection in the hospital."
Yeah, I'm not surprised. No sirial infections are common. Ann said, "Are classes free with Elise Day?" She doesn't do classes, honey. I mean, she has a she is the director of the International Continent Society's pelvic pain video series and and I will be providing a link to that. I appear in one of those videos. It's this incredible collection of educational videos for doctors around the country.
And we just did an international continent society webinar on IC uh a week ago that was the best IC course I've ever attended. And she just sent me the link this morning. So I want to watch it again. And I'm going to write extensively about what we learned in that. And I've already had contact from one of the presenters in Greece who wants to work with us. So, we're going to I'm on it, babe. I'm on it.
Robbie said, "Do you know of any fermented foods that are not acidic?"
Boy, Robbie, great question.
you know, in this um in this meeting probably six months ago, I bought and I saved it to do a taste test online and it was a fermented It was made by a fermented food company, but instead of cabbage, it was like carrots and beets.
I don't know if anybody remembered that.
It was bad.
It was really bad.
I So just and and and it's it's it's kind of crazy how bad the American diet is because if you go on YouTube, you can see people like there's a guy from Korea who posts his lunch from Korea every day. And my god, it's just they have fermented foods in every meal. There's not a lot of obesity in Korea. They eat really, really well.
I mean, really well. But their diet is so much healthier than ours. And and we don't have a taste for it.
I mean, I used to be able to eat a Reuben sandwich sauerkraut, but I don't know.
I wish I could tell you.
And then a problem with some of our fermented foods is that they're really salty. They're not really fermented.
They're just brinded in salt. And if you're older and have high blood pressure, you can't do that. So, you're welcome, Valerie. Darla says, "Then Vaseline." Yeah, Vaseline would Okay. It's just Vaseline sticky and messy. Kaen said, "The protein in my urine has been consistent." Yeah, it has. Valerie says, "How do I make an appointment with me?" You just call me, honey. I'll give you my phone number.
I'm in California.
That's a phone number for the IT network. And and people are always shocked when I answer the phone. I really I don't have a secretary. I literally answer my phone.
Um and I wish I had a secretary, but no, I don't. Um so, uh you're welcome to call that. Uh just understand that um it's first come first serve. There are some days when I'm on the phone for eight hours. Um by the end of the day my voice is pretty dead. Um it's always good to call like after 10:00 in the morning Pacific time.
Before that I'm just dealing with other urgent things that I've got to do during the day.
And and if you call me and I text you back, I can't talk right now or can I call you later? That just means that somebody's already gotten ahead of you.
And so just leave your message and I will call you back when I can. And and because I'm in California, if you're on the East Coast, I I return phone calls until 5 or 6 at night. And so you could get a phone call from me at 8:00.
And so um you know, that's just a time difference and and just me working late.
So, fair warning, sometimes I can call back a little bit on the late side.
I do my best.
Dolph said, "My Anna is getting a cystocopy next week." Okay, here. Hold on a sec. What have I lost here?
Okay. Hi, Joanna. Nice to see you. I hope you're well.
Uh Dolph said, "My is getting a cystocopy next week. I will be there holding her hand and advocating for her.
She has GSM, stress incontinence, and overactive bladder. I'm hoping she doesn't have mesh erosion.
Good for you, honey. Good for you.
Uh, she did get mesh implanted a year ago with her hysterctomy. Wow. So, she must have had a pretty bad prolapse if they did that.
You know, a cystcopy is not the funnest thing in the world to do, but like I would stream it live.
Like if I were at my doctor right now and he said, "Jill, let's look in your bladder." I'd say, "Yeah, let's do it.
Can we stream it?" I'm not afraid of a cystoscopy. I've had two. It's what I call a liloo. That essentially they numb the urethra, stick a cystoscope in, take a look around, pull it out, you're done.
Because the bladder's not being manipulated. It's not a hydro distension with cystoscopy where, you know, they fill the they fill and stretch the bladder with fluid first. Okay, that's not in the O. You don't do that in the doctor's office. But if they just want to take a quick what I call liyloo, not a big deal because they're not manipulating the bladder at all. They're basically manipulating the urethra.
And um if they have a modern scope, you know, one of the more recent scopes, a narrowand imaging scope, that really gives them a really good opportunity to look at the bladder really carefully.
The biggest the biggest challenge with a cystoscopy is that the first couple of times you pee after re afterwards can be quite brutal because when you stretch the urethra, the urethra hurts.
If you've had a urethra dilation, you always know the first time you pee afterwards is the bite your lip like groan moment.
Um and but normally and that's because the scope stretches the urethra. Okay.
But that normally only lasts like a day and it should get better with every urination. And what I learned over the years is that I mean I was a pretty smart kid when I was going through my first stuff is that if I tried to dribble it out, it just prolonged the pain. And so what I ended up doing at the age of 13, 14, 15 when I was having all my dilations, which we know would never have done anything.
It's just what they did back then is I tried to drink drink a big glass of water and then I waited until I had as much urine in my bladder as I could tolerate and then I went and sit on the toilet and I just let it fly.
That when you just let it go, you get the first burst of pain and then it gets better. Whereas if you're dribble dribble dribble dribble dribble, it's like ow ow ow ow ow ow ow ow ow because you could dribble for a minute and that's ow ow ow ow for a long time.
So you kind of you just have to have a reality check that the first couple of times you pee afterwards, not the funnest thing in the world. But here's the deal. It's really important to let somebody look. You can't let fear stop you. If you if you have if you've had bladder pain for six months or longer than that that is not responding to therapy, it's important to let the doctor look.
Don't force them to guess. If you refuse to let them look, they are guessing. And you deserve more than a guess. We need facts. What's the health of your bladder? Do you have hundreds lesions?
Do you have bladder stones? or in my case, my bladder was perfectly normal despite the fact that I was peeing every 15 minutes.
That's important because if your bladder looks good during cystoscopy, then that means that your urinary symptoms are coming from something else. Usually tight pelvic floor muscles, but they can come from a m uh from a muscle squeezing nerves, although a little bit to a lesser extent. It can come from fibroid tumors pushing on your bladder. It can come from endometriosis attached to your bladder. It can come from a damaged tailbone. It can come from damaged nerves.
So, if you're not getting better, like I've worked with patients who for a decade they've never let a doctor look in their bladder despite the fact that they're in agonizing pain. And it's like, what are you waiting for? You've got to let them look because normally severe pain over time is driven by a hundth lesion. And and if you've got an open wound in your bladder that's screaming, we can treat that. And when you treat it, it usually gets better.
So my personal philosophy for my health care is if I'm in pain, I don't want you to get it. I want you to look at it and tell me what's wrong with it. And so I believe that cystoscopies are important.
They're important.
Darla says, "Wouldn't fermented foods cause a flare?" And somebody with hunter's lesions, yes, they would cause a flare. Somebody with estrogen atrophy, yes, they would. Pelvic floor, probably not so much. Joanna said, "I saw a specialist for pelvic pain. She told me to have an MRI. She wants to see if anything is wrong. It's coming on May 6.
Good.
That's good. You know, I' I've told the story of a patient who had urethral pain for a decade and she saw tons of doctors and they just blew her off. I mean, she didn't have bladder pain. She had urethral pain and they were like, "Well, you've got IC, you've got this incurable bladder disease, yada yada yada." And they did all the IC treatments. None of it worked for her. And finally, a nurse practitioner listened to her.
I have the urethal pain. And the nurse practitioner said, "Let's do an let's do a test." And it was an MRI or a CAT scan. I don't remember which. It was probably an MRI, but it could have been a CAT scan. And you know what they found? She had a big urethral diverticulum.
So, a diverticulum is a little pouch that is going off of something. So if for example you straining to empty your bladder, all that muscle pressure could essentially kind of pop a pocket out of your bladder. I was working with a patient a couple weeks ago who had kind of an orangesized diverticulum near the top of her bladder, but you can also have a little tiny diverticulum off of your urethra. And that's what she had.
And it was I mean so here your urethra is like the size of your little finger. She had a diverticulum.
The length of her urethra connected by a little tiny tube.
And that little sucker had urine in it that was infected. And once they found the diverticulum, man, they just surgically removed it and she's cured.
She's cured.
So, so do you know being really specific about your treatments? I mean about your anatomy. I'm sorry, not your treatments.
Your ability to describe your pain gives doctors a road map on where to look.
Gives physical therapists a road map on where to look. And if you always have pain in exactly the same location every single time, left side down here, right side down here, centered on this side, we have to understand what's at that physical location.
Is it a nerve?
Is it a is it a muscle knot? Is it a trigger point? Is it a hunter's ulcer on the inside of your bladder? Is it a diverticulum?
Yeah. So, I'm all for having having more tests just to try to understand your anatomy a little bit more. Valerie said, "Nothing's helped me. I had the inner stem surgery, Botox, laser, physical therapy. Nothing has helped. My doctor has nothing else to offer me." Okay, so Valerie, that's all about your phenotype.
You are the perfect case study. You are matching a case study in the in the big IC class that we did a week ago.
Um, so what do our guidelines say? If you're not responding to therapy, you're getting worse rather than better. We want to take a step back and revisit that diagnosis. What could we have missed? Because clearly they missed something.
They missed something or they aren't doing they aren't focusing in the right direction. So, do you know what an I do you know what the IC phenotypes are?
Have you ever heard anybody describe or use the term phenotype?
Let me know in chat and then we can go through that. Darla says, "I have a mass in my uterus pushing against my bladder.
Could that affect me?" Hell yeah, Darla.
Definitely. Absolutely.
And we have research to show that when that mass is removed or when that fibroid is removed, the urinary symptoms go away. I think in like 75% of patients who have that done.
So I mean I I mean because the pelvis is a small confined area and and so for example one of the reasons why uh constipation causes flares is that if you've got a bowel filled with stool, it's literally pushing everything out of position.
And so we we've long known that being constipated can cause bladder discomfort. And that's just a physical room thing. And the same is true with a mass. I mean, if your bladder's here and your ear is here, but you got a math there, what is it doing? It's pushing the bladder. It's knocking the bladder over. That could easily be a source of discomfort. Okay. Valerie says to explain phenotyping. Okay. So, hold on.
Let me see if I got my slides. Hold on.
Okay, so this is my thing. This is my favorite thing to talk about.
You know what? I actually haven't used those in a while. Okay, if you were to come to a support group meeting, like a real in-person support group meeting, which unfortunately we don't have anymore because CO shut them all down.
One of the things that would really amaze you is how different we all are.
That for some people I see begins in childhood while for others IC begins after menopause. They have the same diagnosis of interstitial cyitis. But are we really the same? The answer of course is no. For some people, IC begins while they're going through chemotherapy because the chemicals of the chemo damage the bladder. While for others, IC begins after they fall and break their tailbone. Again, the same diagnosis of interstitial cyitis, but are they biologically anat an anatonomically?
Wait, wait, is that right?
Okay. Pathologically, anatom anatonomically. Is that the right way to say that? Okay. Anyway, are they the same? And the answer, of course, is no, they're not.
And here's what we've learned in the last 30 years is bladder therapies don't work for most of us. They don't.
Why?
If I see were a bladder disease, certainly bladder treatment should work, right?
But they don't. And the other harsh thing, the harsh fact is when you look in the bladder of patients, we all have very different bladders.
About 5% of patients have hunter's lesions, which you say you've had.
Hunter's lesions are open wounds in the bladder wall that are known for causing very very severe pain and diet sensitivity, etc. I, on the other hand, also in interstial cyitis, have a perfectly normal bladder. I mean, it's pink. It's healthy. There's nothing red in it. Yet, I was peeing every 15 minutes just like you. We had the same diagnosis, but clearly we weren't the same.
So, today, all the top tier doctors are doing something called phenotyping. We need to figure out what group you're in because each group has its own treatments.
Anatomical. Thank you, Carrie.
Thank you. Um, here.
This is what happens when you talk a lot.
Anatonomically.
Anatomically. Anatomically. That's it.
You try talking to me at five o'clock on any day after I've been talking all day.
Yikes. My throat struggles, but it is what it is. Okay.
So, distinct patient groups, each with their own treatments.
And we have very painfully and financially learned that you can't put apples, oranges, and bananas in the same study and expect success. Pretty much every single IC study that's ever been done failed for new treatments except one. So all the bladder treatments, including Elmeron, no better than placebo, if not worse. The only treatment that had overwhelming success for 70 to 80% of the patients who did it was pelvic floor physical therapy. And when that study came out in 200 either 2008 or 2011, that was a a a critical turning point for the IC movement because up to that point, everybody's going bladder disease, bladder disease, bladder disease. The bladder treatments didn't work. And now physical therapy and this fantastic National Institutes of Health study was incredibly successful. And that's when everybody went, uhoh, maybe this isn't just a bladder disease.
Maybe there are some muscle problems.
And now today, we recognize that the muscle patients are actually 87% of IC patients. So we don't even think of IC as an incurable bladder disease anymore.
We think of IC as a pelvic pain syndrome for which there are many potential causes.
So our job now is to try to phenotype you to figure out which group you fit into. And you you've already you're already in one group, Hunter's lesions.
Hunter's lesions is a distinct group in the IC patient population that have their own treatments.
Now you what you may not know is we now have a new insight into why lesions occur in the first place because that's one of the overwhelming mysteries of IC is what causes these wounds in the bladder that are so freaking painful.
Well, it was Europeans in Europe, I mean I see researchers in Europe who discovered viral infections in patients with hunter lesions. Not all of them, but a good chunk of them actually had a vir active viral infections in their bladder wall and in their urine. Specifically, Epstein bar uh monucleiosis also polyoma BK, polyoma JC um and even to a much lesser extent herpes and HPV, but the dominant one is Epstein bar.
So they were looking at the urine of patients with lesions and the urine of patients without lesions and they kept finding virus in the patient with lesions but not in the patients without lesions.
So then the Americans took five years and the through the US national institutes of health they had hundreds of samples of ur of urine samples from IC patients over time. So they went back and they looked at that urine to see if virus was there and they found virus in about 5% of patients.
How many what's the percentage of patients with hunter's lesions about 5%.
So now they are doing uh antivirals. We but this is very new. I mean this is really just in the last five years or so. But we're having a a growing number of of doctors who are testing for virus and if they're finding virus, they're giving that patient an antiviral.
And this is where lactoerin shines because our lactoerin study that we came out a year and a half ago showed that red inflamed bladders became pink and healthy and hunter's lesions virtually disappeared. So what does lactopherin do? It helps your body fight off infection. So that supports the whole theory that some hunter's lesions are caused by infection, viral infection. And then another known cause of hunter's lesions is actually a damaged ligament.
There's a ligament called the uterosacral ligament that helps the vagina in place. Unfortunately, a group of nerves sit on top of this ligament.
nerves from the bladder up to the spine rest on top of this ligament. And when that ligament is damaged or stretched out, the nerves become stretched out and inflamed and irritated. And inflamed nerves can also cause, you know, redness and irritation and wounds. I All you have to do is think about shingles, you know. Well, actually that's a bad example. shingles is viral. But anyway, a a neuro inflammatory source is possible for hundreds lesions because irritated nerves release something called substance P which damages tissue.
Okay. How do they figure out if it's a virus? They do a next generation DNA urine test.
There there's testing that they can do.
Uh they can do a blood test. I mean, how do they test for mono? So, if you and and it's amazing. I mean, I've worked with several patients who have gone back and one in particular, she was like in her 60s, she had a raging uh Epstein bar infection raging.
Um that was the source of her hunter lesions. So, that's something that we can think about there. So, you can see hunter's lesions have their own distinct group. Now, conventional conventional treatment for hunter's lesions is to cauterize the lesion or inject a steroid into the lesion. But now that we've got the insight on the um virus, we're doing antivirals. Now that we know that a a damaged ligament could be the issue. We call that posterior fornic syndrome. We want patients who have lesions to be checked for posterior fornic syndrome.
And I can give you a link on that as well. So that's group number one. So there there are more groups so bear with me. That's group number one. Group number two is bladder wall driven without hunter's lesions. And generally these patients have a smaller bladder capacity. And so we want to figure out why.
The first thing we're going to look at is a chemical injury to the bladder wall. So these would be the patients who who develop IC symptoms while they're going through chemotherapy or if they're using ketamine recreationally. Ketamine damages the bladder wall badly. It can damage the the bladder wall badly. Or god forbid you just be drinking diet soda all day.
Artificial sweeteners are are well known to be quite irritating to the bladder over time like Neutrieet.
So chemical injury the bladder is possible. Our treatment for this patient is to try to figure out what's irritating it. That means you got to have to give up that Diet Coke. If you love your Diet Coke and give your bladder a good six months to heal. Your bladder takes a long time to heal. This is not overnight. And hopefully as it heals things will get better. The second thing we're going to look at in this group is going to be the quality and health of your skin, aka your estrogen level. Is this a patient who developed IC symptoms as they've gotten older? If they develop their IC symptoms in their late 40s, 50s, 60s, or 70s, very first thing we're going to consider is what's the health of their skin? Because when you don't have the estrogen anymore, your bladder can't make the mucus anymore, which means your bladder's ability to defend itself is now compromised. So that cup of coffee you used to have in your 40s, all of a sudden you can't have in your 50s because it your bladder just doesn't have the resources. it doesn't have the gag layer, the mucus to defend itself from all the acid in that coffee or in that soda. So, for this patient, we're going to be doing a topical estrogen.
We're going to try to improve the health of the skin. And sometimes that's enough and sometimes that's not enough. And this is where we're going to go to something that might coat and protect the bladder. Um, like back here, I don't know if you can see this.
Bladder builder is is the the top rated supplement by far. Had the best best reviews. Um, it's a chondroitinbased supplement. Chondroitin acts to coat the bladder wall. Corsetin is an anti-histamine. It can kind prevent some of that mass cell induced inflammation.
got some beneficial probiotics in it, but it also has pea in it to calm nerves down. So, there are some patients who even though they're doing the estrogen, their bladder is still vulnerable and they really benefit from a chondroitinbased supplement.
The bladder wall has chondroitin in it.
Chondroitin is essential to the superficial integrity of the bladder wall. And best of all, chondroitin has a very high bioavailability of 25%. So, a lot a lot of this gets to the bladder to be meaningful and helpful.
Okay, let's go to our and then another thing we're going to look for in this bladder wall group is chronic infection.
We're going to look for chronic bacterial infection, but believe it or not, that's not as common as chronic fungal infection.
And again, it was our own National Institutes of Health who kept finding candida in the urine of patients with IC. And the more candida present, the more bladder pain they had. And if there's ever a group of patients massively overexposed to antibiotics, it's us. Because we were all given antibiotics when our symptoms started.
Some some of us massive amount of antibiotics. I took massive amounts of antibiotics as a kid because I didn't know any better. When you take an antibiotic, you kill the good bacteria that normally keep the candida in check.
And now the candida has an an open ticket to dominate the biome.
So we want if you flare when you eat sugar, if you flare when you eat carb, that could be a sign that you're dealing with a candida infection. That's real.
And again, that's not this crazy lady on the internet making it up. This is the map research network through the national institutes of health who made this discovery.
Uh I can give you that research there's articles on on our website about it. So we look for viral infection, we look for fungal infection and we look for bacterial infection.
But remember we've got our new research study now that talks about UTI hypertens hyper sensitivity syndrome. If you're online, I can guarantee you you go into any group, there's going to be people who say you've got a chronic bacterial infection and you need to be on antibiotics.
Now, we know that feeling like you have an infection after the infection is gone is is the nerves themselves in the bladder wall that are healing and and have become very very sensitive. So, so don't necessarily believe the people online who are going to all say in this specific group, which is a pretty outspoken group, y'all have infection and y'all need to be y'all need to be on antibiotics.
If you think you've got infection, you can have a next generation DNA urine test. And if that finds it, you've got all the ammunition you need to get antibiotics. But if that nextg test comes back negative, you did not have an infection. That means something else is causing your symptoms. Specifically, our next group, which is pelvic floor. 87% of IC patients have tight hypertonic pelvic floor muscles. 87% guys, 87%.
This is why we consider IC a neuromuscular disorder.
Tight muscles are bad. They have long-term consequences. specifically.
They squeeze things.
They squeeze the urethra closed, which is why it's hard to pee. They squeeze the vagina closed, which is why p sex can be painful. They squeeze the rectum.
I mean, the bell and the anus and the rectum, you know, you know that part.
Squeeze that shut. That's why you you have trouble having bowel movements because the pelvic floor muscles are tight. But they're not just squeezing structures. They're I mean, they're not just squeezing those. They're squeezing nerves. So if you have pain when you sit down that gets better when you stand up, that's usually a muscle squeezing a nerve. And they squeeze blood vessels.
So if your bladder is supposed to get 24 units of blood day and it's only getting 10, are you going to have a healthy bladder? Well, oh hell no. Of course not. Because your bladder is not given is not being given the oxygen and the food that it needs to repair itself.
So a lot of patients with pelvic eskeeia or is sheia have bladder wall symptoms but their bladder wall's perfectly healthy. It's really not the structure of the bladder itself that's a problem.
It's a fact that the bladder is not getting good blood supply. So our therapeutic priority for this group is to restore good blood flow. And the way we do that is by relaxing muscles with physical therapy.
Now, there are some patients out there, they go to physical therapy one once and it hurts and they go, "Oh, I'm not doing that again." Now, listen guys, the most single most important diagnostic test in the IC world now is the pelvic floor assessment.
Because if you've got tight pelvic floor muscles, physical therapy can heal you.
But when you go to the physical therapist the first time, guess what?
They're touching muscles. Their job is to find what hurts.
And so you know you you generally when you go to that pelvic floor assessment again your ability to describe your symptoms gives them a road map. You got to describe the pain where the pain is.
You can say bladder but do you have pain on the left side? Do you have pain on the right side? You ever have a vibration when you sit down? Do you ever have sciatica? Do you ever have pins and needles? Anything at all like that? You got to think about that before you go to that first pelvic floor assessment. And the job of the pelvic floor physical therapist is to be a neutral set of eyes just studying your anatomy down there.
They would normally have you walk up and down the hallway. Are you walking normally or do you limp or do you tilt to one side?
They're going to measure your legs. Do you have one leg longer than the other?
Because if you are, then you got a hip that's tilted. And if you got a hip that's tilted when you walk, that stresses your pelvic floor. Do you have an ankle that rolls in? Do you have an ankle that rolls out? that directly affects your pelvic floor.
So, the most important part of that pelvic floor assessment is the internal exam.
So, they're going to ask, "Can I please do a vaginal or a rectal vaginal for women, rectal for men, can I please do a very quick vaginal exam?" You're not in stirrups. It's not like a urologist or a gynecologist. There is no speculum involved. Literally, you just have your you're on a physical therapy table. Your knees are up about a foot. There's a glove. There's KY and there's a finger that's put in there and all she's going to do is touch muscle groups. That's it.
Shallow muscles, mid-level muscles, deeper muscles. And if she can touch a muscle and trigger your pain, girl, that is your hallelujah moment. It's like, oh my god, that's it. What are you touching?
There's no better proof that you have a muscle problem if touching a muscle triggers pain and discomfort.
And so you want it to hurt at that first appointment. That's it. Oh my god.
That's it. What are you touching? For me, it was my left purformis muscle.
Okay. Ideally, you walk out of that appointment with the name of the muscle and some preliminary suggestions on what we can do to rehabilitate that muscle.
It's important that you tell that physical therapist about any trauma you've had, any accidents that you've had, did you have a difficult child birth? Did you ever fall on your tailbone? Have you suffered any damage? Were you in any sports where you fell a lot? Think about past trauma. They need to know all of that. And you'd be amazed at the number of you who after you talk to me and they go, "Oh god, yeah, I forgot about that.
I'd have really, you know, I'll never forget the the woman who was like in high school and jumping over a fire hydrant and she landed right on top of the fire hydrant, right on that knob and she bled profusely.
Had a massive pelvic floor injury from trying to show off by jumping over that.
You'd be amazed how common that is.
Tailbone injuries are very, very common.
And you know, most of all, do you have tailbone pain?
If you got tailbone pains, you got to figure that out. We want to understand what's going on with that tailbone.
Okay? So, this for again for this group, we're going to restore blood supply by doing proper pelvic floor physical therapy. The question you ask that physical therapist over time is, are my muscles responding to therapy or are they always locking back down into tension? If your muscles are always tight every time you go in, then we got to figure that out because that means that we're dealing with a what we call a bony structure abnormality. There's something putting stress on that muscle on that location. For me, it's my SI joint on my left side. My SI joints very flexible, so my left purformis muscle locks down very tight to stabilize the joint. It could be a bad hip. It could be a bad SI joint. It could be a broken tailbone. It could be a bad knee where you're limping, but for many patients, it's literally their feet, how their foot hits the ground.
High heels are done. No more high heels.
When you got tight pelvic floor muscles, it's just way too traumatic to those muscles.
Okay. Our fourth group that some people put in the pelvic floor group, I don't. I I have it as a separate group, is pudendal neuralgia.
These are patients who have positional symptoms. are fine when they stand, but when they sit down, it hurts. Or when they bend over, it hurts. They may have sciatica. They may not be able to sleep on their left side, but they can sleep on their right side. Or they might be a not be able to sleep on their back, but they can sleep on a side. If body position changes the pain, then we have to understand what's happening at that body position. And generally, that's something squeezing a nerve. usually tight pelvic floor muscles. Another symptom of that is something called pegad where you randomly feel aroused and it's a painful arousal and it's awkward and it's embarrassing and you don't want to tell anybody about it. I call it a dirty secret of IC because it happens to a lot of people. It happened to me. I had it for about two months years ago. Haven't had it since. Well, I had pins and needles in my vulva a few years ago, and that was tight pelvic floor muscle squeezing my pudendal nerve, but a kind of a severe nerve compression is when it causes pead. And so, if you've had any symptoms like that, again, we want to tell that physical therapist that. We want to tell the doctor that. You don't need to hide it. And therapeutically, we're going to try to figure out which nerve is the problem and where it's compromised and try to release it again with physical therapy, but they might also do nerve blocks and things like that. And then our last phenotype is one everybody agrees on. It's called widespread pain, chronic overlapping pain conditions.
These are patients who have multiple pain conditions, IC, IBS, or vulvadenia or TMJ or migraines or fibromyalgia.
Most of these patients have very sensitive skin. You will notice that I always wear soft things. I cannot wear especially the seams really bug me. So I have to wear really soft clothes.
Um so we have we tend to have very sensitive skin. We also have a wicked sense of smell. We can smell things that other people can't smell. Smells really drive us crazy. We might be sensitive to light. We might be sensitive to sound.
So, when you're the patient, you're so freaking confused. Why do I have all these pain conditions? They don't make sense. And eventually, you start to feel like you're being punished. Like, really, God? You're giving me something else this year? If that's how I felt, because I'm in this group.
We had a fabulous research team come together called the Chronic Pain Research Alliance. And the Chronic Pain Research Alliance started studying the central nervous system. And they found it that patients with multiple pain conditions when you look at our brain it is operating in a constant state of fight or flight that 24 hours a day seven days a week our brain is behaving as if our life is at stake and that's simply not normal. Normally fight or flight is very short term. You know, it goes back, you know, 100,000 years when you were on a hill and you saw a saber-tooth tiger walking down the valley. Of course, you went into fight or flight. Your body's preparing you to run or fight for your life. But the tiger walks away. And once the threat is gone, fight or flight is supposed to turn off and the brain calms everything down.
That doesn't happen for patients with co overlapping chronic overlapping pain.
our brain has been habituated into fight or flight. Uh fight or flight happens after major injuries. If you've been in pain for 14 days, that puts the brain into a constant state of fight or flight. So what the research shows is 80% of the children who go on to develop chronic overlapping pain, there's a major physical injury. And then for the other 20% of us, it's a history of abuse or bullying.
And the common theme in in my office is people who grow up in a home of an alcoholic, a violent alcoholic, where literally every day they go into fight or flight when mom or dad gets home and starts drinking because mom or dad beats them.
It's horrific the stories that I've gotten from patients. I grew up in a neighborhood, as I've said, with a a somebody who became a rapist or murderer, and I was one of his favorite targets. I did not leave my home without fear for a decade.
I learned fight or flight at a very very young age and and it's you know it's really interesting because I'm 60 I'm 65 now and I've always considered myself very well adjusted and I mean I have a master's degree in psychology and I was going on for a PhD in psychology when I got IC and I have come to see now now that all this new research has come out about childhood trauma that every decision I made as an adult was influenced by the trauma and that fundamental lack of safety I felt my entire life because of what happened to me. And there there is legitimate work to be done there.
There's legitimate grief that happens there for that child adult who grew up in a very violent home. Uh it was nothing about them. This is how a child's brain responds to p a persistent sense of fear and you can't get over it. This is how the brain is wired. The brain stem has one job to save our lives. If it senses a threat, it goes into fight or flight. That that is not a conscious behavior. That is entirely unc subconscious or unc subconscious. You have no control over that. If the brain stem senses a threat, you're in fight or flight.
It is what it is. So, we now as adults have to train it out of that. And it's it takes a lot of work because there's work with grief and there's work with trauma and there's work with cognitive behavioral therapy. We've got to learn to recognize when we go into fight orfly and nip that sucker in the bud. Uh, and it's a skill set. it it's a it's a big big skill set. There are a number of techniques we can do in cognitive behavioral therapy to physically turn that off. For example, not to be goofy here, but I mean there are a number of breathing methods. So if we want to turn the brain, if we want to calm the vagus nerve and just try to get that, you can do a breathing method called 457 where you breathe in for four, hold for five, and release for seven.
Do that a couple of times. Breathe in for four.
Hold for five, release for seven.
Another thing you can do, which is which is silly, it's going to sound silly, but it really works, is uh you can uh what do they call it? It's where you make your lips flutter. go.
There's something about that vibration and that sound that's actually kind of calming to the brain. And there's research behind that. I've written articles on it. Got some good articles on this. So anyway, there you go.
Hunter's lesions, bladder wall driven, pelvic floor driven, pudendal neuralgia, and widespread pain. I believe that there are many more little tiny phenotypes. I think there's a hormone-driven phenotype. I think that there's an autoimmune phenotype. Uh uh I think posterior fornic syndrome is a phenotype. Um so you know this is going to be the great adventure of the next 10 years of IC. Valerie says Wendy Jones has great meditations to help us get out of fight orflight on YouTube. She does breath work too. Excellent. Thank you for the recommendation.
Darla here says, "Yes, I hit my vagina on a boy spike at about four years.
Couldn't pee for three days." Perfect example of a pelvic injury.
Ann says, "You're trying a new pelvic floor therapist who's going to come to your home." Excellent. Those are great.
You know, there are more and more physical therapists who who will actually come to your home and give you the privacy of being at your home.
Uh Darla says, "Oh, Jill, I'm so excited. I learned so much today. Oh my gosh, this hope. Oh, thank you for all of this. I learned so much.
And if you want to learn more, come on over to the IC Network website, icetwork.org.
And I've got a couple of things to show you.
So, listen, I have been on these phenotypes for 15 years now.
I mean, they just made so much sense. I I so I have been pushing that for years.
Our book IC 101, not just a bladder disease, is the first book that goes over the phenotypes.
And I'm going to be updating this this summer because we have a lot more information now, but it's it's it's good. But just know I'm going to rewrite it. Um, and then we have the IC 101 flare guide that talks about the bladder wall flare, pelvic floor flare, the neuralgia flare, the stress flare, the menstrual flare, the urethral flare, the vulvadenia flare, the rectal flare, the sex flare, and the allergy flare.
And it predicts your flares based upon your phenotype. And I'm going to sneeze.
Bear with me. Is it going to come?
Excuse me.
Allergies have been a [ __ ] this year.
I'm just telling you right now. And then of course we have our IC 101 diet guide which is our newest publication.
And this predicts your diet sensitivity based upon your phenotype. So for example, the hunter's lesion patient is going to have the most diet sensitivity.
The genital urinary syndrome of menopause estrogen atrophy patient, they're going to have a lot of diet sensitivity.
The widespread pain patient is going to be much more sensitive to caffeine and neurostimulatory foods. The pelvic floor patient might not be that diet sensitive because their fundamental problem really isn't the bladder wall. The fundamental problem is actually the pelvic floor.
And so the cool thing about the diet guide is it has our new updated food list which is our big three column food list which is usually bladder friendly foods we're trying and foods to avoid. And we broke I broke it up into categories. So we've got a section on beverages. You got a section on grains, breads, and pastries. A section on spices. Section on vitamins and supplements.
A section on snacks and sweets. A section on condiments, dressings, oils, and soups. Food additives, dairy, including for the first time going through the dairy alternatives like the the almond milks, etc. meats, fruits, and veggies. So, if you need help with the diet, please get our diet guide. It's just $9.99 if you get it as a PDF file. And that's what keeps me doing these meetings cuz hello, I have got bills to pay.
Big time bills to pay.
Who knew who you know just paying for the technology of all this is quite daunting at times.
Peggy said you do the stop sign thing like I taught you. Excellent.
Excellent.
So, what she's talking about is um an anxiety management technique um where if you find yourself having a negative thought, a scary thought because hello, for those of us who have widespread pain, we are stuck in anxiety. So, we do a lot of catastrophizing every day. I will tell you, every day I have a catastrophic thought about an earthquake. Don't ask me why. I have no idea why my brain does this, but every single my day my brain goes, "It's a big earthquake and happen today."
Don't ask me why. I have no idea why my brain does that, but it legit does that.
The problem is is that you we start having so many negative thoughts that we just scare ourselves back into fight or flight all the time. And that's just reinforc reinforcing bad things. So the way we bring ourselves out of fight orflight, we have to bring ourselves out of the catastrophic thinking. And a really good technique is the stop sign technique. When you catch yourself starting to have a negative scary thought, close your eyes and just visualize a stop sign. Just stop. I don't want to hear it. I don't want to hear about the freaking earthquake.
And then you take a single deep breath in out.
And then you have to remind yourself it's just a thought. You have no power.
Just a thought. Let it go. Stop signing.
Deep breath. Minimize the thought. And what that does is that turns off the adrenaline. We're stopping that adrenaline cascade that is driving the fight orflight through the oxygen.
Anyway, I can talk. Anybody who wants to know more about that, you can just give me a phone call. Uh Darla says, "Yeah, because I live in California and girl, I got to tell you, I have lived through some earthquakes.
I have, you know, we had the big earthquake in San Francisco. When was that? like 20 years ago when part of the the Bay Bridge collapsed and um San Francisco parts of San Francisco burned. Um, and it was during the All-Star game at Candlestick Park. And uh, I remember I was I just come back from work and I was putting my swimsuit to go to the gym and I was in the bathroom and I I felt the shaking and it was big. I mean, it was a lot of shaking and my family was watching the All-Star game. And so, you know, when an earthquake like that happens, you ever you immediately get together with everybody, you know, you got make sure everybody's safe. So, I go tearing into the rest of the house.
And by this time, they're they're they were talking about it at the All-Star game and they were showing helicopter and fire starting to burn and the bridge partially collapsed. And that was when we knew. And my best friend worked right in the middle of that and I couldn't reach her for 3 days and I thought she died on that damn freeway. Oo.
Stressful. PTSD. We all have PTSD over things like that. It is what it is. All right. We've been going for two and a half hours now and I am here as long as you have questions.
I'm happy to take any question you might have.
Uh, but it is past dinner time on the East Coast. It's only 3:30 here in California.
So, give me your questions, guys.
Sometimes our meetings go 5 hours, sometimes they go 90 minutes. Um, as long as you have questions, I am happy to stay. Otherwise, I'm going to go pull weeds cuz I got to work on my front yard big time. I couldn't do it this morning because I went to the gym. So, today I've walked two miles. I lifted weights at the gym. I came home. I had a gluten-free muffin and egg whites for breakfast. That's all I eaten today.
Um, and then I started prepping for this meeting.
So, oh, and I made a chicken. I started making chicken stew, but it didn't smell right. So, that's getting thrown out.
Give me your questions and if we're done, we're done.
If anybody wants to reach me, you can just call the IC network.
Oh, Peggy, that's so sweet, honey. Thank you.
That's very, very sweet. She said something lovely to me.
Uh Kathy said, uh, will the new lactopherin be natural synthetic? It will be bio a bio identical made in a lab.
So it is made in a laboratory and again you know my motivation for this hunt is just really simple and that is times are really hard right now. I you know how much gas was I mean I drove up to Hillsburg yesterday. It's a 20 mile drive for me. I went past a gas station.
Diesel gas was 750.
My gas I filled up my gas was56570, but I have paid more than $6 for gasoline in the last six weeks. It's just up and down, up and down. Crazy times.
Crazy times.
So anyway, you know, I I had this really sweet long long longtime customer. I mean, she'd, you know, gotten our magazine for 20 years and she called me and she just said, "Chill, thank you so much. You have helped me so much. I'm so appreciative of everything you've done for me and you, you know," she was just like making me feel great.
And then she said, "I'm really sorry, but I don't have $25 for a membership anymore.
I don't. I have to cancel." And I'm like, "It's okay, hun. It's okay."
So, that's how I feel about supplements.
Some of, you know, some of the better supplements can be 50, 60, $70 a month, and that's just not possible. So, and the research with lactoerin is so encouraging and so and that's our most expensive supplement at $74 and lots of people are using it and they're doing great but it's it's getting tight. So, I thought you know what it is I feel like it's my responsibility to bring on a lactoerin from a company that I trust that might be half the price and so we will have that very very soon. They finished it last week and um uh it's made uh oh I I I I don't think I can say who it's made by yet until I have it, but I would just tell you it is a company that I work with very very closely and I really trust them.
Their their safety testing is second to none. They're just the best company I've ever worked with.
Darla said, "I'm starving all the time now. Why do you think that is?"
Oh, thank you, Dolphin. Dolphin says, "You've helped me so much." Thank you.
You're welcome. I'm glad that I can help.
I mean, I'm not your doctor, guys. My job is to educate, inform, give you open up some new windows, and then kick you in the tush, get you back to your doctor with a new set of questions, right? You know, so you don't I I it's never my place to give you medical advice. It is my job to be an educator and that's what I try to do.
Uh, so Darla is hungry all the time. Why do I think that is? I I don't know, hun.
I mean, are you are you is your So, it's not unusual for some patients to become afraid to eat uh because they're afraid of triggering a flare. that anxiety about food is incredibly common. In fact, I have an article on it in our our new diet guide about how to deal with anxiety related to food. And you know, my IBS in my early 20s was so bad that for I don't know, five years, every morning I would have horrific cramping.
Just horrific cramping. It turned out it was the oatmeal my doctor told me to eat. I'm very very I cannot eat oatmeal.
It's horrific.
Um and so while we were trying to figure that out, I too became very afraid to eat.
And I I've always said to all my friends and my family, it's like I'm not a foodie at all. Like my sister is an incredible cook. She is such a foodie, but she didn't have the IBS that I did.
And for me, I, you know, I just never was able to enjoy at a time when most people create really important social habits, which is going out with your family and friends in your 20s and dating and all that sort of stuff. There's nothing worse than going on a date and having an IBS attack, which happened to me, you know, and and so um I totally understand that fear about eating and and my diet is just literally what I eat now is I get one or two rotisserie chickens a week. I just got one this morning.
I get veggies and I get salad and that's what I eat. I don't even put sauces on them. I don't put dressings on them.
Getting older is weird because then the other thing that happens as you get older is your body starts doing all sorts of weird food things. So all of a sudden FODMAPs became an issue and then god forbid I eat too much mango then you know which I did a couple weeks ago and ended up at the ER you know uh ridiculous.
So um Kathy said is there any good salad dressing? Yes, we have a bunch of salad dressing recipes in the Icy Chef cookbook which I'm trying to find.
Where is it?
Here it is.
You do realize that one of these days I'm going to try to sit down in that and I'm going to fall on my tush right here online. It's going to happen.
Okay.
I see chef cookbook.
This is one of the first cookbooks that we did. So, back when we had our very very large forum um uh which we don't we we I we have a copy of but I shut it down because I wasn't going to and people don't use forums anymore but we had like 70,000 members and we had almost a million posts. We asked patients for their favorite recipes and these are all published here. So, these are recipes that were submitted by IC patients as bladder friendly. And there's a whole section in here on um salad dressings.
Let me see if I can find it.
So this is just like another um you know a little way a way to make money. We published it 11 years ago actually.
Probably need to redo it.
All right. Where are they?
I've got Okay. What do I have?
Beverages. Hot drinks, shakes and creamy drinks, iced and sweet teas, iced coffee and coffee substitutes, fruit smoothies, herbal and veggie drinks, alcoholic drinks, breakfast, pancakes, egg dishes, burgers, sauces and gravy, marinades, main dishes, fish, poultry, beef, pork, vegetarian, pasta, vegetables.
Oh, here we go. Salad dressing. Okay, so there's like 12 salad dressings in here.
There's hummus salad dressing, uh, a chip or salad dressing, a cheesy dill salad dressing, cottage cheese salad dressing, roasted garlic olive oil dressing, root beer cream salad dressing, cheese lover salad dressing, creamy dill cucumber dressing, mock red wine salad dressing, a tropical cream salad dressing, and cheesy garlic salad dressing.
All righty. So, you can find that in the icing at workshop. Uh Darla said, "I'm sorry. I mean, I'm super hungry all the time. I feel better when my stomach is full." Oh, you feel better when your stomach is Well, I think we all feel better when when our stomach is full rather than empty.
I'm not sure, Darla. I mean, you have to try to explain it a little bit more.
Yeah, Kathy, it's in the IC network shop and there's a PDF version. And I think that's pretty cheap. It's not just it's getting harder and harder to print things because paper it's so expensive now. Um so and you can look for more.
We're you know we're going to do a lot more PDF files and stuff like that sooner. Dolphin says, "I will log in and become a member. So worth it. I appreciate all of your work." Oh, thank you, honey.
Thank you. I do try.
All right, guys. Well, listen. I think we we are approaching um three hours.
Thank you, Brandon. Thank you very much.
I try. I I try. That's all I can say is I try.
You know, life is just so I don't know, man. If I've had any lessons in the last couple of years, it's you can get through you can get through really hard things when you feel like you're going to fail, but in the end, we can survive and thrive even under very difficult situation. and having gone through the death of my parents and breast cancer and aphib, you know, it's just like, man, I'm just going to I'm just going to go until one day I stop. I'm just determined to make this life have value when so many people told me when I was younger that I would never have value. Remember, I had a doctor say to me, "You will forever be a burden on your family."
Well, screw him. I proved him wrong.
Peggy said, "Do you think we can have a FaceTime chat so we can meet and talk with you and others?" Well, yeah. I mean, I'm always happy to go into Zoom.
Uh, you know, uh, people just have to ask. We used to go into Zoom all the time when we had these meetings. Maybe next maybe next time. Um, I because I feel like I want to do more. So, we've got a new Zoom group for our Elmeron survivors. Um, and they're now meeting once a month or once every two months and I'm facilitating that um so that they can tell their stories. So, I think I think we we need to do more of those for sure.
All right, I am going to say goodbye to YouTube.
I'll see you guys later. The goal here is to be next week. Knock on wood.
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