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From Pain to Peace: Callie Krajcir's Journey with Interstitial Cystitis
What happens when your bladder pain starts in childhood, but doctors don't believe you until adulthood? In this episode, I talk with Callie Krajcir, IC dietitian, coach, and founder of "Road to Remission," about her journey from suffering in silence to becoming symptom-free. We unpack the layers of interstitial cystitis (IC), pelvic floor dysfunction, and the nervous system's role in chronic pain. Callie opens up about college struggles, pelvic PT challenges, pelvic wand use, and how she helps hundreds of women find hope and healing. Whether newly diagnosed or still searching for answers, this episode is a must-listen.
For more information on Callie:
Timeline:
00:30 Introduction
00:46 Callie's Journey with Interstitial Cystitis
02:15 Becoming an IC Dietician
03:19 Helping Others: Programs and Platforms
05:17 Common Symptoms of IC
07:49 College Struggles and Athletic Challenges
10:12 Pelvic Floor and Physical Therapy Insights
12:51 Diagnosis and Treatment Experiences
24:14 The Importance of Support and Positive Mindset
29:19 Final Thoughts and Encouragement
Hi there. I'm here today with Callie Krajcir, who is an expert in IC, so interstitial cystitis. And so we were gonna talk about interstitial cystitis today. Welcome. Thanks for having me. I'm really excited to be here. Yeah. So, tell me how you're interested in ic Started. Yeah, so I mean, there's a long version and a short version to this story.
I'll give you the short version. Basically, ever since I was a kid, I had bladder pain, so I had that burning urination type feeling that you normally would experience during a UTI. But you know, I didn't have a UTI and kind of suffered in silence up until I was 18. I got a IC diagnosis, which was both comforting and also terrifying because one, I finally had a name for what I was going through, so that was validating.
But then my doctors told me, you know, this is a condition that doesn't have a cure, and kind of just said like, I'm gonna have to learn to live with it. Which is hard to hear at age 18 and when After that, I started doing various treatments for it, and if you want me to get into that later, we can. But along the way, when I was in college, I also developed symptoms of urinary frequency and urgency.
So I felt like I had to pee 24 7, which isn't fun when you're in a dorm in college. So. Struggled for a while, and then when I was about 25, I got laid off from my job. I was working as a registered dietician in a hospital setting, and then the pandemic hit and I decided to go out on my own, start my own business.
And I thought, well, what should I specialize in? And. Along the way, I discovered, or I met someone that called themselves an IC dietician, so someone specializing in this condition, and I was like, that's really cool. I didn't know that you could specialize in interstitial cystitis. And so that's what I picked.
I became the second IC dietician in the world. And. I ended up getting relief of my own. I'm actually symptom free now because I ended up figuring out what was causing my symptoms, which was a combination of a very tight pelvic floor and a nervous system just stuck in chronic stress. So once I addressed those things, that's how I ended up getting relief and I'm basically helping other people get relief now.
So that's the short answer. And how do you do that? What platforms, what services do you offer? Yeah, so I'm essentially acting as like a nutrition coach. So I'm doing that. And I work virtually. So I have a program that's called Road to Remission, and it combines a very extensive education component.
So we have classes on topics like. Nervous system pelvic health. We have a nutrition, a lot of nutrition stuff in there. I really do believe with conditions like this, knowledge is power. It's gonna help you advocate for yourself as best you can. There's a big community component to it. So we have a community of over 200.
Women with IC or OAB, and that is incredibly helpful for my clients because they can talk to one another face to face and understand that they're not alone. Yeah. And there's other people in the world that are going through what they go through. And then I basically coach them through any lifestyle changes that they need to make.
So a lot of my clients do need help with, like conducting an elimination diet, maybe figuring out if they have any diet triggers. I can help them implement some of the nervous system work that they're doing. And yeah, I'm just kind of acting as a coach. And, and where can people find you? They can find me.
I mean, I have a website, cali k nutrition.com. I have like every social media account you could ever imagine. So I'm on Instagram, I'm on TikTok, I'm on YouTube. I have my own podcast. Pinterest, like, yeah I'm everywhere. And your podcast is brilliantly called. I see you, but. The letter I, the letter C, and then U, right?
Yeah. Which I think is a great name. So, I mean, you described your own symptoms. When we're talking about ic, what kind of symptoms do you usually see in your population? Yeah, so we see a lot of the painful urination. So some people will have pain when their bladder fills. That gets relieved when they urinate, and then other people, this was the case for me.
My pain got worse when I urinated, which I ended up finding out was mostly related to my pelvic floor. But a lot of people also experienced that urinary frequency and urgency. They might have trouble sleeping at night because they have this constant urge to go. Like when I was in college, I, if I was laying in my bed about to fall asleep and I felt like I had one drop of urine in my bladder, I had to get it out.
Like it would drive me absolutely crazy. There are people that experience this pressure feeling like pressure in their bladder. That's pretty much. The classic signs and symptoms. Does everybody have every symptom? No. Yeah, so it's kind of just like, it is a condition that presents pretty differently in, in a lot of people.
So I think that's what makes it difficult to, you know, find a treatment. For what, when you were in college and you were going to the bathroom so frequently, how frequently were you going. I would say like every 20 minutes. Yeah, I could go sooner than that. Like, I remember going to like, okay, I, I was a freshman.
I was going to like a party at a frat house. Like things you do in college. I would get to the party. I felt like my bladder was gonna burst. I sometimes would pee on the root there on the walk there. I would pull up on the side of the road or in the bushes and go, but I would get there. I would use the bathroom.
I would get downstairs and I'd be like, I have to go again. It'd be one to two minutes later. I would instantly have that urge, and it just drove me absolutely insane. Yeah. I think people don't realize often how debilitating it is. Right? And sometimes when you say, oh, I'm going to the bathroom frequently, I mean, I've met women who think going to the bathroom, you know, six times a day is too frequent.
But you know, when your symptoms have gotten progressively worse and you're emptying every 20 minutes, I mean, , you don't have time to do anything else, right? That occupies so much of your time. Yeah, and there was a time, my sophomore year of college, this is a confession that I recently, you know, came out with on social media, but I had, I was getting up so often during the night and I just wasn't sleeping.
I feel like I was delirious, but I had this red solo cup that I would literally just. Pop a squat and pee a little, like a couple drops into every, you know, 20 to 30 minutes. 'cause I was so tired and so desperate that it's like, it's crazy the things that you'll do, when you're having those constant symptoms.
Well, and that is. That is a horrible thing to kind of live through, right? Because your sleep does get so very, very impacted. I mean, it's amazing that you could continue with college, right? Because I mean, that just impacts almost every moment of your day, right? You're either going to the bathroom or leaving the bathroom.
Yes. And I was playing volleyball at a D two school, so not D one, but like still pretty intense and there's a lot of pressure on you and. That's hugely intense. Yeah, the uniform, you're wearing spandex, so it's constantly like putting some pressure on your pelvic floor and your bladder. And you know, I'd be on these bus trips and luckily there was a bathroom on the bus.
But yeah, there was a lot of triggers and I think that makes sense why college was the worst. On my journey with these symptoms, there's just stress in a lot of different avenues of my life. There was new foods that I was having. I was, you know, dabbling with some alcohol. Like there was a lot of changes there.
And it makes sense. Well, and the stress of college, the new environment, trying to succeed and being an athlete. That's a lot. Right? And I think people that do athletics in college at that level, I mean, you're wired a little bit differently than. The average person, right?
And you're getting your body to do, you know, kind of amazing things, but sometimes those amazing things have negative impacts, right, because you're Oh yeah. Wearing your stress. Yeah. Different. I would have the worst flares after games because I just, I was holding so much tension in my pelvic floor and I wasn't drinking enough water and there was.
All the pressure on me. So yeah, they've, that, those were the worst years. So, you know, it's interesting that you say that. I've seen a lot of patients over the years that have pelvic floor tightness and it is related to their sport, and, you know, chronic use of one part of the body or, just a lot of tension and sometimes.
You know, it's not something that you would necessarily think about. Right? So I had a patient who was a pitcher, she's a softball pitcher, and she had a lot of. Shoulder issues. And then those shoulder issues just caused her to protect that shoulder, walk a little bit differently. And then her pelvic floor got super tight and she presented with a lot of bladder symptoms, but it was all because of her shoulder, which nobody ever thinks about.
So, I mean, do you feel like your symptoms got worse at one point because of training or something you were repetitively doing? Honestly, I don't think so, just because I played three sports up until college. Okay. So like athletics were a normal part of my life and I got to switch sports each season.
So I feel like I wasn't constantly doing the same motions over and over for like yeah, my childhood, which is good. But I think things did. Well, I would say my high school volleyball training was harder than my college volleyball training and just like what we were doing, like the weightlifting, right.
The running, like, there was a lot of different exercises we were doing. I'm sure that contributed. Yeah I think that's something that young athletes don't think about, or aren't taught about. And. I don't know. I, may be a little bit biased here, but I don't think it's something that your average trainer is thinking about either.
No. And something I discovered recently, I was interviewing a pelvic PT on the topic of breathing mechanics. Oh yeah. And it's something reflecting back, and as an adult, I still have to do this. I don't breathe when I'm doing exercises like. I am such a shallow breather. I'm not connected to my pelvic floor when I breathe, so I feel like I, I was set up for failure 'cause no one.
Taught me how to properly like breathe and move my body and really connect. Yeah. The the breathing is a huge issue and I, so I am like you, I hold my breath all the time when I am exercising. And so I always tell people that when they're lifting, they should be doing it in the mirror so that they're watching themselves and they know when they're exhaling.
Because I know I shouldn't be holding my breath, but I still do it unless I'm watching myself. How long did it take you to get your diagnosis? It's hard to say because I. Again, the bladder pain started as long as I can remember. I also struggled with IBS symptoms since I was a kid, and I'm pretty sure my parents took me to a pediatrician and pediatrician's I don't know what's going on here.
So I kind of just learned to deal with it and to push the pain. And then I complained my whole life to my parents n,ot over and over again, but. I think my senior year my mom was like, okay, we need to find a specialist in this. So she got me in to see a urologist that, I mean, I had not a not great experience with, and she was the one that ended up. Making me do a cystoscopy with hydro distension and after that procedure, she didn't see anything wrong with my bladder, but based on my symptoms, she diagnosed me with ic. Did she do that in the office, or did she do it under anesthesia? No, she did it under anesthesia and. Okay. I ended up, a couple years later, I had another cystoscopy in office and it was so incredibly painful that if I ever had to do it again, I would definitely do it on anesthesia.
Yeah, that's actually why I was asking, because, we do cystoscopy in the office all the time, but doing cystoscopy on a young IC patient is so usually so, it's a horrible experience for everybody involved. Very traumatizing. Mm-hmm. And it makes sense because my pelvic floor muscles were so tight, and I was just guarding so much. And that's really common. And no matter how much I tell you, I mean, I can say relax 30 times. Right. But it's pretty much impossible to do. How old were you when you got your type pelvic floor diagnosis? That was probably. In like between ages 19 and 20.
Okay. So not that much further along? No. And at first they were talking about my pelvic floor and they recommended me to go to pt and I remember the pelvic PT office calling me to set up an appointment and I literally said to them, I don't want to do this. Yeah. And like, because I didn't understand. The connection, the pain was in my bladder, so why am I doing this PT for my pelvic floor muscles?
Also, I had no idea what my pelvic floor muscles were at the time, so I just, I didn't get it. Eventually I came back to it. I, since then, I've seen probably eight different pelvic PTs on my journey, and they have all been so incredibly. Different in their approach, which is very interesting to me. They've all helped me in different ways, but yeah, their approach has all been so different.
Yeah. Which is. Yeah. Interesting. I mean, I think you've said a lot of really important things. I, so I think your experience as a teen is really common, right? Nobody knows what the pelvic floor does and, you know, addressing it is something that I think is hard for, I. Anybody to do. A lot of people don't like pelvic floor pt, but I think especially if you're going to see a pelvic floor PT before you've had children and kind of been through that experience it's fairly overwhelming and you're right.
I mean, the treatments for a lot of these things. Very, I mean, there isn't necessarily one standardized approach. I really like PTs. I think in general, PTs are, pretty phenomenal at what they do, but there are definitely people that are better at it than others. You know, teaching strengthening is pretty easy.
Teaching people how to fix pain and loosen those muscles, or relax those muscles, that is much more challenging. And I also think it's important for. Women re,member that if you don't like your PT or if it's not a good fit for you, you should absolutely see somebody else because it's such an intimate experience.
And when people come to me and they say, well, I saw this person and then I switched, I always just assume that it's not a good fit. It doesn't mean that person is bad at their job, right? It just means that they're not your person. So I don't know if you experienced any of that, if any of the PTs just didn't fit you.
I feel like I, I didn't vibe with one or two of them. I saw three, no wait two near my college and then there were some, like when I was living with my parents that I saw, there's, I just now am networking with PTs and I recently was like working with someone in New Jersey and I, when I was visiting my brother, I visited a new clinic in Tampa.
Like I just like to see. What other practitioners have to offer? Do they have any sort of new insight? You know, the PT I was seeing in New Jersey, she took a very holistic approach and she was looking at my whole body in a way that no one ever did before. She was talking about my posture of my whole body.
She looked at my feet, she looked at my ribs and the way that I was breathing or not breathing through my back. And so she gave me some helpful, you know, tips and tricks for. You know, dealing with that and just like, I don't have pain anymore, but I do have some other just lingering like low back pain and I have a weird symptom of burning in my feet and like that's why I'm still seeking out pelvic pt and I just like to see the different approaches that they have.
But something that really helped me on my PT journey was using a pelvic wand, and I still to this day use a pelvic wand. Yeah. So, I really like the holistic approach. I think that, your body's a machine and you don't always realize how you are using it and if you're using it in a dysfunctional way.
But do you wanna talk about the pelvic wand and what that is? I. Yeah, definitely. It's a tool that you can use to do the manual, like the internal therapy that your PT is doing when you're in the office with them. You can essentially do that at home, so I would see my PT maybe once a week, and then like three.
Or so days when I wasn't there, I would do maybe five minutes of wand work vaginally on my own. And that was so helpful for me because my baseline is just so tight. My pelvic floor is so tight and no matter what my PT does. In the office and it just makes me feel so wonderful afterwards. Like the next day I'm like back to square one, so I had to have something extra to, you know, get me through that.
Keep my muscles, not as tight. And something that I haven't really talked about this publicly recently, but I had never had a rectal exam. In all of those PTs that I had seen. And when I went to Tampa, the PT was like, oh my gosh, you've never had anyone do a rectal exam on you? That's absolutely crazy to me.
And I was like, no. And then I was like, can you get me in and do a recal exam? And she did. And she was like, your muscles are so tight. That this has to be contributing to some of the lingering symptoms you're having. And now I'm using my wand rectally as well. I'm kind of alternating, and I have two different wands.
So just to be clear, there are two different wands and one day I'll do the wand vaginally. One day I'll do it rectally, and then one or two days I'll take off. That's the pattern I'm in now. Do you find one works better than the other, like vaginally versus rectally? Yeah. The rectal stuff is very new to me, so I'm still kind of just.
Get, like inserting the wand and just letting it hang out. Maybe doing a little bit of exploring. Yeah. But when it comes to like the vaginal work, I've been doing it for years and I feel like I'm an expert in that area at this point. Yeah. So I feel like, I think having a, a wand is such an important tool.
So some people need it regularly, like you. Do. I think if you tend towards pelvic floor tightness, it recurs over your lifetime. And even if you have a period where it's totally quiet, at some point something's gonna happen. That triggers it. And so it's just nice to have that tool available once you know how to use it in case things recur and maybe you need to get back into pt, but you can kind of help manage things along the way.
Yeah, I think whether to do a vaginal or rectal exam, I think most people that only see women, 'cause you can feel the muscles vaginally or rectally. And I think a lot of people that I. Just see women will just do it vaginally. Sometimes they do it rectally. Not everybody's comfortable with a rectal exam, but pelvic floor TEUs happens to men too.
Right? And then you have to do a rectal exam because that's the only way that you can kind of touch those muscles. Was there anything else that helped you? Nutrition, medications? Yeah, I can definitely talk about that stuff. I did wanna say there were two instances where I tried pelvic floor Botox.
That was offered to me. I would say it helped a little bit, but I think it was more of like a bandaid solution for me. I think that my tight pelvic floor stems from being stuck in chronic stress. Yeah. My entire life. I'm kind of rewiring my brain at this point, so that's a work in progress, but that's something that I tried.
I tried. How painful was that for you? Was it done in the office? Yes, it is painful. Yeah. But it's not a long time for them to do the injections. It wasn't a big deal for me. And like afterwards I was, I felt normal, but yeah. And also I had really bad di vulvodynia too when I was in college and I actually had a vestibulectomy.
Which was also very traumatic and can talk about it more. Don't have to. I just wanted to mention it just in case you, you have been through so much. I mean, those are so many symptoms for a young woman. And I think, just IBS, just the ic, just the tight muscles just the would be hard. But all of those things together and truthfully, they do frequently happen together.
\ I, I mean that, that is a lot to manage. Yeah, it was. But the thing is, I never knew anything different. There was always some issue, and my symptoms were constant. So I don't know. Some people develop IC symptoms later in life, and it's like they had a life up until that point that they can think about and be like, I wanna get back to that.
Yeah, for me, I was like, I don't even know what's possible for me if I were to get relief. And once I did, I was like, this is awesome. Like I wake up in the morning and my first pee of the day, it used to be so painful, like 10 outta 10 burning. Now I have no pain. And I do this like little celebratory like I.
I'm so happy. I love the fact that you're celebrating, but I, you know, I think that's a really good point. 'cause sometimes you have these symptoms and it's your normal right, and you really don't know anything else and you don't, you don't know kind of what, how abnormal what you're handling is. Yeah. And I think.
Like on the topic of someone young developing these symptoms, I have a lot of people reaching out to me that are teenagers and they find me through like TikTok or Instagram and they're like, what do I do? Yeah. I just feel for them 'cause it's like I was in their shoes. I didn't have social media when I was growing up, so I didn't have anyone to reach out to.
So I kind of just sucked it up. But I think now there's like so much out there like. You can go down the rabbit hole of Googling and going on Reddit and going on TikTok. It's like, it's probably so overwhelming for them. Yeah. I think it is overwhelming and I think, those young girls are, you know, it's hard to find the provider or the person to help you, so I think providing good information online just becomes so, so very important.
Right, because. I mean, those are hard symptoms to, to deal with as a young woman. Um, I, I think you do such a great job of, you know, talking about how multifactorial I see is right, and all the different things that can kind of contribute. Where, where do you think someone should start? I love that question, and I recently recorded a podcast episode about what I would do if I could go back and do it again.
Yeah. Like, get diagnosed again, knowing what I know now. 'cause that's just really fascinating to me. And people are always asking me like, what should I do? What should I do? And I'm like, I can't give you advice on what you should do, but here's what I would do. Yeah. If I, so, you know, for. For me in that scenario, like if I were to be diagnosed today, knowing what I know now, like I, I would get into pelvic PT right away.
You know, that's something I would definitely address. I would be addressing my nervous system right away as well. So learning how to actually breathe I would really like, for me, there was a lot of unresolved. Smaller trauma, like I like to call it little T trauma. It wasn't anything big, but like little feelings of like guilt and shame and things like that, that really stuck with me that I didn't process.
I really needed to process that. So whether that's going to therapy or just figuring that out in some way, I would find some sort of support. I think having support on this journey is very important because so many of us with ic, we don't know anybody else in our day-to-day life with ic, or at least no one's talking about it.
So I think finding somebody else with this condition or similar symptoms that actually believes that they can get relief. It is so important. Yeah. In terms of I would educate myself as much as possible. I didn't really know where to look back then, but I feel like there's a lot out there now.
You just need to know, like, okay, what sources are legit versus what's not? And you know, I'm trying to put out content like that to educate people, but. Those are some of the things that I would do. One of the most helpful things for me was just like believing that I could get better, which was hard because so many of my doctors gave me the impression that I wasn't going to get better.
There was a doctor, like the top IC doctor in my area, told me that there was nothing else she could do for me, and that was absolutely. Devastating to hear at 21, and if I listened to that person and just kind of like decided, okay, relief is impossible for me, I wouldn't be here today, like helping other people and like having ex relief of my own.
It really came down to believing it was possible and then finding what was my main issue, what was causing my pain, which ended up being the pelvic floor and the nervous system. But. I mean, everyone's journey is just so different. It's just. I think believing it's possible to overcome these symptoms and not seeing it as like this incurable condition.
I love everything that you just said 'cause I think it's true, and I think you do need some hope. I mean, and there's sometimes there's a fine line between hope and reasonable expectations, but there are a lot of things that you can do and there are so many things that you can try and the community part for something like this.
It is really important. I'm sure that when you were in college and you were going to the bathroom every 20 minutes, you did not know anyone else who was having that. Right. And those kind of things are just so isolating. 'cause you know, your body's different. And it's in a way that you can't really hide.
Everybody knows that. Right. And I got labeled as like the person that always has to pee. And like it was this big joke and it was fine, but like, it's not. Great to be known as like the person with bladder issues. It's one of those I think small traumas, right? It's a microtrauma.
It's fine. We all have those things, but it's not something that particularly love to hear. Right? It is not kind, for sure. Yeah, exactly. And you asked me earlier, like, did anything else help you? Like for me, the medications, nothing ever helped me in terms of medications, no supplements helped me.
I went down the the path of following a strict IC diet for a while. I ended up with nutrient deficiencies. I lost weight, I had food fear. So at one point I just gave up and I really wasn't diet sensitive. So for me that wasn't an issue. And yeah, I think for me the biggest things that helped me was believing I could get relief going to pelvic PT and actually buying into it and actually doing the work, like the homework activities that she was prescribing for me.
And then, just like overcoming. The fear because I think there's so much fear with conditions. Like I see that it's okay there's no cure out there. Yeah, kind of go down this whole like what if rabbit hole? What if I never get better? What if I get worse? You know? It is like.
Letting go of that fear was so helpful. Those thought aren't helpful. , One of the things that I always tell patients and this may be the only condition that I actually say this about, but if I have someone and I really think they're ic, I encourage them not to look it up online. Right?
Because there are some people see that just have. You know, such a horrible course and go through so many horrible things, and it's so debilitating, but that in fact is the most rare, right? Most of the time we can make you better, and sometimes reading those really horrible stories about how someone has suffered is just does not help you believe you're gonna get better.
No, it doesn't. I think you need to surround yourself with positive support and see positive stories of people getting relief. That's why like a lot of my content is me sharing my clients' wins. 'cause it's like showing people what's possible for them. Well, and I think it's so great for someone to hear, oh, you know, I got better with pt, I got better with a pelvic wand.
I, you know. Did try the diet and it worked for me, or I figured out, you know, these couple of things are my big triggers and so I can avoid them most of the time. I think all of those stories are just really helpful and much more helpful than nothing worked for me, and I'm, I'm devastated. Right.
Exactly, you can get stuck in that space, especially if you're reading like Facebook support groups of other people suffering. And yeah, the Reddit threads are so negative and I hate to say that 'cause. It's helpful for some people, but like even me as someone with relief, like if I go into those Reddit threads, I'm like, wow, this is putting me in fight or flight right now.
Yeah, no I think that's absolutely true and focusing on the positive is so important, but , it is not easy. So I just have to tell you, I love everything that you do and I like your content and I think you just provide so much hope and help for so many people. Thank you so much all.
Yeah. Thank you so much for doing this with me. I really appreciate it. Yeah, of course. Anytime.
