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Waiting Pant-less on the Table and Solving Your IC Puzzle

IC You Podcast Episode 16

Hosted by: Callie Krajcir, RD

Featuring: Mikayla Criger

(Callie) [00:00:00] Hey everyone, welcome back to another episode of IC You. I had Botox injections in my pelvic floor last Wednesday. I have since posted about it and received various messages from people on Instagram and through other social media outlets and it seems like many people are under the impression that Botox is only put in the bladder in people with IC. That is a procedure, but it is a separate procedure than Botox in the pelvic floor. I had this done because I have constant tension in my pelvic floor, and that causes me a lot of my symptoms, mainly the burning. This is something that I've been working on through physical therapy, regular psychotherapy, trying to get stress [00:01:00] managed, and I'm just hitting a roadblock. This seemed to be the next step and my doctor thought so too. So I got it done in the office and they gave me four injections. Two were on the outside and two were kind of on the inside, which was a little difficult to maneuver, but it actually wasn't as painful as I remember it being.

(Callie) My doctor told me it will take up to 10 days to kick in, so I will let you all know how it goes. The other type of Botox procedure is done in the bladder. In my understanding, this procedure is a bit riskier and you also have to be put under anesthesia. Then there is that risk of having to self [00:02:00] catheterize yourself. I don't believe that happens with a lot of people, but like I said, I don't know a whole lot about that procedure. I would definitely recommend getting educated on that or even run it by your doctor. So there's your mini lesson on Botox for the week! Our guest for this week is an IC warrior like you and I, her name is Mikayla and she was so awesome to just be so willing to share her story with me and the rest of you this week. I hope you enjoy our interview, thanks for spending time with me today. Now let's get into the episode.

(Callie) Hi everyone! I am here with Mikayla Criger today. Can you give me a little intro on yourself?

(Mikayla) Sure! I am a municipal employee, I work in emergency management. I just moved to Boston from Virginia so a lot of life change going on, but [00:04:00] looking forward to developing professionally.

(Callie) That's awesome! So let's get into your IC journey. Why don't you start out with how everything started?

(Mikayla) So I was about 15 when I started having UTIs often or what I thought was a UTI. I would go to urgent care and they would do a urine analysis and of course it would come back with myocytes, sometimes nitrites, sometimes not. They'd prescribe me medication and send me on my way. My sophomore year of college things started getting really bad. Like I would go to use the bathroom and I would stand up and immediately feel like I have to pee all over [00:05:00] again. So I went to see my gynecologist, and she took me in for an intravaginal ultrasound and she took a look at my ovaries and said “one of your ovaries is inflamed, it could be pushing on your bladder”. A couple of months later, I still hadn't improved. I started with this constant burning sensation, but no UTI coming back on the culture. So she referred me on to the first urologist I'd ever seen. I went in and she scraped me up putting the catheter in, so that just intensified my pain. They gave me a long list of foods and drinks I should stay away from and just kinda sent me on my way. So I looked at the list and it was so intimidating, I think I threw it away. Actually, I went into remission for two years. I thought it was like a big fluke. Then last year in June, I had a relapse and it was terrible. I was in a flare for three weeks. So then i thought It's gotta be interstitial cystitis. I went from remission to the worst flare I've ever had for an entire month. My flares to me look like urethral burning sometimes tingling in my vulva. So after a while I asked my gynecologist for a referral. She sent me to urogynecology and that was even worse than my first experience. She pulls me back and so she does the post voiding ultrasound to see how much is left in your bladder, and my bladder was completely empty, which was crazy because I was like, “I could pee right here right now”. So the doctor comes in and she wants to take a swab from my urethra and make sure there's no infection. She referred me out to pelvic floor PT, and said “I think you have Interstitial Cystitis”, and I'm like, “you didn't even examine me, you didn't even touch me, how can you come to that conclusion?” And she's like, “oh, just based on your symptoms and your history, I don't have to examine you.”. And I think because I was coming out of a period of remission, I [00:11:00] was really, really hopeful that she was going to find something else and I think when I realized that she wasn't interested in just double checking, and at that point in my journey, I was so desperate for it to be something else. I started crying because it's overwhelming. I love to go out and be social. I love to eat food, drink wine, and share food. And so I was thinking of the experiences I'm gonna miss out on with my friends now, or every time I go out to a restaurant and I’ll have to look at the menu for 30 minutes trying to find something I can have. And so I start crying and she looks at me and she goes, “I don't know why you're crying. It can be worse. At least it's not cancer.” And I just looked at her stunned. I didn't know what to say. It's still not devastating, but it's so overwhelming to find out that you have a disease that doesn't end. There's no cure. You just [00:13:00] manage it, and after a period of not being able to manage it for six plus months, that was hard to hear. So as I'm walking out of the room, I hear the physician I was just with come out of a room with a patient and they're laughing about me having cried. And looking back, I can't imagine how many other people just like me, young, naive, maybe just overwhelmed by the potential of having this condition, go in there and get treated like that. It was a horrific experience. I went back to my gynecologist immediately. I told her about what happened and she referred me out to another urologist who then said, “well, I wanna run a CT, I wanna try a cystoscopy,” And so $1,600 in tests later I thought, You know, if I pay this money and I do these tests, at least I'll know for sure what it is, what it isn't. And I can get some guidance in managing my condition, which is all I really want because my gynecologist kept telling me, “you're too young to be in this much pain.” The last time I saw her, I'm like my vaginas ruining my life.It's something between that and my bladder, all of that feeling just radiates in my vulva. So my vaginas ruining my life and it's doing it while my bladder's doing it by proxy. So she's like, “this condition can be managed, you're too young to be having these issues. This makes me really sad.” After that, she sent me to this urologist and he ran a CT. Didn't find anything except one of my kidneys is a little larger than the other, and there's some [00:18:00] prefluid in my pelvis, which he says is normal, biological. I scheduled the cystoscopy again and it was so busy I was sitting on the floor in the hallway waiting to be called back. I get into the exam room, I am pantsless this time waiting on the table for about 45 minutes.

(Callie) That is so long. Oh my God. And the worst part is those offices are so cold. So you're also cold. The worst is when my butt sweats in the summertime and you stick to the paper. So what happened then?

(Mikayla) So I've been waiting here under this little tiny sheet they give you to go over your legs. The urogynecologist and another nurse come into my room in the middle of a conversation, don't even stop to speak to me. So he does something on the computer. He's still talking to this nurse, I'm laying there pantsless with this little sheet over me. They're just like in my room. Right. So finally, they leave, another 10 minutes goes by and another nurse finally comes in and injects me with the lidocaine to numb me up. This urogynecologist comes in, maybe 15-20 minutes later, tries to insert the scope into my urethra. He's using his thumbnail and I was like, “oh, please stop, that hurts.” So finally he gets it in and then he is like, “why can't I see anything, everything's cloudy, I can't see anything. Hold on, I have to get a new scope.” So he pulls it out and then realizes that he left lube on the actual camera part of the scope, and that's why he can't see anything. At this point I'm ready to go. And he is like, all right, real quick, real quick. So he sticks it in there, again, not so gently, but not as worse as the first time, takes a quick look around is like, “I think your uterus is bulging against your bladder. All right, your bladder looks normal.” He pulls out the scope very quickly. I'm like ouch, ouch, ouch, why would you do that? And then he leaves, I clean myself up. He comes back and he goes, “your bladder looks normal, try this over the counter supplement called Cystoprotek, drink lots of water, and I'll go print you out a food list.”

(Callie) They love that food list and then they love not explaining it.

(Mikayla) The food list itself is so overwhelming. I can't believe that anybody gives [00:23:00] that out without prefacing, hey, this isn't not forever. Not interested in talking about a care plan, like how to manage my symptoms, how to manage my pain. There were things I wanted to try, and he just didn't have time or didn't care to talk about them.

(Callie) Wait, and you had to pay a lot of money for that procedure. $368 to get traumatized physically and mentally again, and left more confused I'm sure than you came in.

(Mikayla) Yeah. Yep. A pretty traumatic journey in terms of my IC and practitioners. Really the only person who's ever been on my side was my gynecologist. I did see a pelvic floor therapist for a while, but she wasn't as I think as well versed in IC as she could have been. Most of my treatment was [00:25:00] Internal tens unit, no trigger point therapy, she did some light cupping for me once, but a lot of it was like biofeedback and internal tens. So I didn't get a ton of relief from that, and I only went for maybe three or four weeks. Since I moved, that stress of that has died down, I really am in a good place with my IC. Without medical professional oversight here, I am living my best life with minor levels of pain on a regular basis.

(Callie) Well, that's good! Especially since you've been through it with your previous doctors. I had a couple of comments during your story and I feel like I don't wanna forget anything. First of all, I wanna say there are so many of us who had to do cystoscopies awake and I didn't know until a couple months ago that they can put you out. Nobody offered that to me, and you know, when my cystoscopy showed nothing I was there crying [00:27:00] cuz it hurt so bad. And the doctor was like, “yeah, um, this isn't showing anything. You've already tried everything we could do for you. There's nothing left for us to do. Here's the name of three different doctors.” One is somebody I had already been to and it was horrible.

(Mikayla) It’s a lot, especially when you're going through a painful procedure like that and you’re in pain when you get there, that's why you're having the procedure to find the source of your pain. So for them to think let me jam this scope into your very small little urethra without care just to tell you, oh, sorry, I traumatized you, I guess I could have done it while you were asleep.

(Callie) I feel like their care would be completely different if they had IC , so [00:28:00] different. I'm sure there's plenty of really good practitioners out there. I finally found one that I really trust, but it's such a shame that we all have to go through three to five horrible doctors or other professionals to finally get to that one person that really understands us. So that's really sad.

(Mikayla) IC is not even so uncommon anymore. There are so many people that have interstitial cystitis, I feel like. And so for us to just not have a plethora of caregivers that are really well versed in this field, I have seen uros who barely knew anything about IC outside of here's your list of no-no foods.

(Callie) Oh, it's so frustrating. Usually in my experience, the urogynecologists know more because they only see women, but you know, in your case that wasn't true. You can never predict how things are gonna go.

(Mikayla) Yeah, it is hard. At this point I've seen two females, well, a female urologist, a male urologist, and a female urogynecologist. I don't think any of them, the guy probably knew more about interstitials status. Cuz she did refer me out to public floor therapy and then was like, come back in six weeks and let me know how you're doing. But she really was not that interested in helping me manage the condition. I'm in pain, I'm uncomfortable. There's gotta be something I can do, or you can give me to relieve that. But the worst part is if you're on methamphetamine, like a stimulant for ADHD, you're supposed to wait two [00:31:00] weeks of not taking it to take the Uribel and that's because the Uribel is a mal inhibitor, and so it can actually cause stroke or hypertensive crisis. When my primary found out that I had taken them together one or two times, not together together, but like one after the other, maybe 12 hours apart, she was like, you're lucky you didn't stroke out.But this doctor didn't read any of my files, so she didn't know that. Of course.

(Callie) Oh my God. I'm just shaking my head at your story. Like, this is ridiculous. And I hear things like this so often that it does kind of make you really not feel great about the level of care that we have in the US. I’m not exactly sure how things are outside of our country, but you know, [00:32:00] it's not great. And at least we have each other to kind of share our stories which kind of helps to relate and connect with other people, make you feel not alone, but we shouldn't have to rely on each other to get through this.

(Mikayla) I mean, what does it say when people who are battling chronic painful illness are the only other people for those of us battling chronic painful illness. Why are we our own support system when we can barely support ourselves?

(Callie) Right. And why is there not really not that much research happening for this condition. I truly feel like we can all do a better job of talking about it more openly, because I know it is a super taboo topic, but you know, we're never gonna raise awareness if we don't talk about [00:33:00] it. But also that shouldn't be on us and on our shoulders to do so. I go back and forth with that.

(Mikayla) Yeah. Sometimes I've called it autoimmune, because in some cases it is, and though it's probably not in my case, people seem to be able to get their heads around that, and not that the inside of my bladder just deteriorates sometimes, or that I pee razor blades on a regular, or that my pee feels like hot lava. Sometimes they don't understand any of that. They're just like, oh, autoimmune. Okay. Yeah. Sorry to hear that. But if you say bladder, they're like, Ew.

(Callie) Yeah, right. Like we make them uncomfortable, even though we're the ones [00:34:00] that are always uncomfortable. I'm like, um, do you wanna live my life?

(Mikayla) I think the only way I get people to really understand the kind of pain I'm in is when I have to tell people it's like peeing razor blades. And then they're like, oh, wow, that sounds really painful. And I'm like, why do I have to explain my pain in that much depth for you to believe me? Why can't I just say, yeah, I have a bladder condition and it hurts.

(Callie) They assume that since we look normal and we can go to work that we're not feeling this way. We're just really good at pushing through and carrying on .

(Mikayla) Yes. I was thinking about all the sick days I've taken in the past or little things before my IC really started affecting me. And now I'm [00:35:00] thinking about how many days I've gotten up, grudged to work. I commute on a train and then walk about 15 minutes throughout my commute. And I don't take sick days anymore because I'm just like, If I can live with Interstitial Cystitis the way I have and all the traumatizing appointments I've had and all the flares that went on for weeks or months, what's a little cold right.

(Callie) Yeah, exactly. You're very strong for doing all of that. I always feel really bad for people who just aren't able to work and have to go on disability. It really must be very difficult for those people. I'm very lucky that I was able to start my own business and work from home full time, starting a week ago. So I'm lucky, and I [00:36:00] always have to remind myself that. Even when it's not great, or if I ate something that causes a flare, I always try to remember it could be much worse. Like I've experienced worse. I don't know if that's a healthy mindset, but just do your best, right?

(Mikayla) Yeah. I always tell myself, I have made it through a hundred percent of my bad days. Thus far. You know, you always beat the bad days and that's why we're all still here. And that's what keeps me going. Yeah, I know. There's eventually gonna be a worse day, but there's also gonna be a better day or lots of better days.

(Callie) Yeah there you go! So tell me about the food now. You had all that frustration when you were handed the IC [00:38:00] diet. So what did you do with all of that?

(Mikayla) So the first time I got the list, I looked it over and I was like, yeah, I'm not doing this. I got no explanation about elimination diets or food triggers. They were just like, stop eating these things, they're gonna piss off your bladder. And I was like, you mean forever?

(Callie) Right? It's kind of implied by most doctors that it's forever and it's not, they just don't pause, they're just like, don't consume coffee. It’s as if you can tell somebody to stop eating everything, that's fun and they're gonna have a good mindset about it.

(Mikayla) I love coffee, and throughout the entirety of my IC journey, I have never not had a single cup of coffee in the morning, but I'm really lucky to do that. I've told this to the last three urogynecologists that I've seen, food does not seem to [00:39:00] affect me as much as it does most people with IC. Which I think is why for a while in the beginning, I was convinced maybe it's not IC.I know diet is such a huge part for a lot of folks with IC, but for me, strawberries will send me to hell and back, but nothing else really. I have coffee every morning. I never stopped doing that. I always have one cup. I don't have that many food triggers and if I do, it's usually only if I go way overboard with something that I know already will flare me, like soy sauce. I had teriyaki, chicken and rice for lunch three days in a row because I made a big batch. The first day I was fine, the second day I was fine, the third day I was like, keeled over. I was like, and that's when I learned soy sauce is on my caution list, my personal caution list. Strawberries are on my big no no list.

(Callie) Okay. So you didn't do a formal elimination diet, you kind of just ate things and happened to notice their effects?

(Mikayla) I didn't do an elimination diet in the way that you should do it, like you're supposed to take a baseline and then go through the trial list. I didn't do that. I was like, okay, I'm in pain, and then I stopped consuming most of the things on the trigger list. Like I knew strawberries were a big no no, so I just stopped eating them. I started trying to incorporate more bladder friendly [00:42:00] foods and fewer of the no no foods. So not like no-no foods gone entirely, but a lot less of that. After a while, I started to notice patterns, really. If I was really stressed and went overboard with the trigger food, then it was compounding. But if I just go overboard on a trigger food it’s a different kind of pain.

(Callie) You mentioned that you think your IC is pelvic floor related, right?

(Mikayla) Yes, and I just recently actually came to that conclusion because of the content on your page and a lot of women talk about pelvic floor dysfunction and how, you know, they have it along with their IC or their IC is caused by it. And I was thinking like, God, I'm so young, I'm in my early twenties, I don't have any children. I've never had any pelvic trauma that I remember, like it never fell off of a horse or onto a fence or anything like that, so how could I have pelvic floor dysfunction? I started reading up on it and I [00:45:00] did for a while have actual UTIs back to back and I carry my stress there, so when I went to see my pelvic floor therapist and she did the initial internal examination, she was like, your muscles are really tight here. And so I was. Oh, okay, maybe this is a piece of my puzzle that I hadn't considered before.

(Callie) That's a common misconception that young people don't have any issues with pelvic floor stuff. And I'm sure any pelvic floor physical therapist listening to this will be like, yeah, that's what we've been saying. I mean, there's so much [00:46:00] more to it.

(Mikayla) Yeah, my problem is that I love stress in a weird way. Like I thrive better when I'm under pressure. I've always had high stakes jobs, I'm writing emergency plans for 2 million people. Like the things that I do in my work affect entire municipal areas and so that can be stressful, but for me, it perpetuates my drive and my willingness to do a good job to, you know, be more active and proactive in my career. That probably contributes substantially to my sort of subconscious stress level. I started doing pelvic floor stretches on my own every night. I take 10 minutes and I do my stretches. For the first time since I relapsed, I have been pain free for more than two weeks at a time, I think I'm finally on day 35.

(Callie) That's awesome. And so you can basically eat anything besides strawberries and be fine?

(Mikayla) Um, I would say I can have a lot of the things that are on my personal caution list, as long as it's in moderation and I'm doing my daily stretches. The IC puzzle analogy is so real. There are so many moving pieces to Interstitial Cystitis. Honestly, I have been managing my IC better on my own without a urologist than I ever did [00:51:00] with a urologist, which I don't recommend, I do think people should probably have a really good physician in their lives who can help them, but the fact that I had to do it on my own because my experiences were just so bad. I've finally gotten to this place whereI'm really mostly pain free. The pain that I live with now day to day is so minor. I don't even notice, but just six months ago I would sit down to pee and cringe because I knew what it was gonna feel like.

(Callie) Yeah, totally. I can relate to that so much. I have so many memories of me in grade school and being in the bathroom in so much pain and worrying that I’m taking too long. Like I was just sitting there in pain and it's like, the way our brains function is just so funny sometimes. [00:54:00]I wanted to ask you, so you said a while ago, like when you came out of remission, it was after you had sex. So have you had sex since you were feeling better?

(Mikayla) Okay, so I was personally celibate for a year, had one sexual experience and immediately went into a flare after about six months.I resumed having sex on a regular basis, but I was kind of in between, I would have days where I felt amazing and then days where I was just in horrific pain and it felt like a never ending flare for eight or nine months. So I would say I've had sex on a couple of good days followed by many bad days and looking back, I think that's probably because of the pelvic [00:55:00] floor interaction there and I didn't recognize that before. So I wasn't stretching or doing any aftercare. I would just wake up the next day and be like, ow, why do I hurt?

(Callie) Yeah, it’s hard when you have both good and bad experiences with that. When you're feeling good, you're on top of the world, nothing can stop you, but then once you get that bad experience, it makes you get in your head, right? [00:56:00]

(Mikayla) Yes, and then you overthink having sex. I think looking back, I was clenching up during sex, like tightening my own muscles because I was nervous.

(Callie) Right, and you know, if sex hurts you, then the next experience you might be anticipating that hurt and clenching even more and just throwing yourself into this cycle of pain and fear. I feel like that's something that I've personally been working through with both my physical therapists and my regular therapist to get over both the physical and mental hurdles. It's definitely hard, very difficult. It's a work in progress. I have been in physical therapy since I [00:57:00] was a freshman in college, that's maybe eight years ago now. It definitely can take time, but what advice would you have for somebody who's just starting out in pelvic floor PT?

(Mikayla) I would say find a therapist who knows a lot about Interstitial Cystitis and pelvic floor dysfunction. I think having that dual knowledge of how your pelvic floor muscles interact with your bladder and how they cause pain is so important to really being able to address the pelvic piece of the IC puzzle, if that applies to you. I also would say, find a therapist who's doing the things that you're interested in, or at least willing to talk about that kind of stuff. I really wanted to at least experience or talk about [00:58:00] trigger point therapy, because she said my muscles are tight. So that's something in line with treatment for tight public floor muscles, but either she wasn't comfortable doing that or she wasn't experienced in doing that or she just didn't offer it. So I never had that.

(Callie) If she wasn't, she should have said it and said, maybe you'd be better with another practitioner or give you a referral.

(Mikayla) Yeah, I felt like a lot of my physical therapy was not really being done by my therapist. Like it was either the internal tens unit or the biofeedback. And that just didn't really feel like progress to me,, so if you're not feeling [00:59:00] progress with your therapist, ask what else they can do for you, but before you do any of that, if you don't have a therapist find one who knows what they're doing and really sink your teeth into everything that they can and will offer you.

(Callie) Yeah, that's fantastic. I feel like we talked about so many different things, but the top highlights would be,, not everybody is sensitive to food, try public floor physical therapy, and be kind to your body. Is there anything you wanna add there?

(Mikayla) Advocate for yourself. Medical professionals bully us. We're human beings and we deserve good care. You should file a complaint when your doctors are rude or dismissive or gaslighting you. We need to stop setting this expectation that we don't deserve [01:00:00] good care because we have complex invisible illnesses. We're all human beings. We all have feelings. I think that's another important point just because my journey really was so traumatic for me. Other than that, I would say back to the IC puzzle, if you're doing the diet and you're really not having results, or you're still having pain look into other possible pieces. Pelvic floor, allergies, whatever else it might be, and educate yourself and see what you can address.

(Callie) Yeah, absolutely. It's most likely going to take a combination of treatments. So for me, it's some diet modifications, it's pelvic floor PT, stress management, and a couple other little things. And for you, it's something different. So we're all very different! Do you have any closing [01:01:00] statements?

(Mikayla) Be kind to your body is an exclamation point, not a question mark. You should always be kind to your body. Other than that, just keep pushing right.

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