My Interstitial Cystitis Story - Episode 1

In this episode, I discuss the events that led to me being diagnosed with interstitial cystitis. I share my experiences with how it impacted my life and the treatments I underwent (not all were successful) to get to where I am now.

This is part 1 of the 2 part episode series where I share my backstory.

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• Episode Transcript

  Dr. Kari Roberts: You. Welcome to the Marrone Pelvic Health Podcast. Hi, I'm your host, Dr. Kari Roberts. On this show, we will be discussing a variety of things regarding your pelvic health. These conversations will be a mix of education, personal experiences, and a blend of tips you can apply to have a healthier pelvis. The goal of this show is to normalize conversations around pelvic health and help women stop suffering in silence. You. Thank you for listening to this podcast. I cannot wait to get into this. I have a lot of background information to share with you, and I figured I would make this a two part episode series of the background behind Dr. Kari Roberts. How I went from being a potential patient to now serving women just like you that are listening to the podcast. So today I'm starting with talking about my experience with having interstitial cystitis. It was a long, windy road in a nutshell. I dealt with issues with interstitial cystitis for about ten years. Of the ten years I was misdiagnosed for five, I underwent two, three surgeries. One of them was for not. But we're going to get into it. We're going to get into it. Let's rewind all the way back. Kari as a little girl, I always was known for going to the bathroom all the time. I was a bedwetter. I was always told growing up I had a small bladder, I had an underdeveloped bladder. Got kind of used to being the kid that always had to go to the bathroom on road trips, out with friends, oh, let me find the bathroom. Let me go to the bathroom. That was just me. That was an essence of who I am. Fast forward into it was after I got married. So this was like around 2007 time period. I really don't remember when I had symptoms of interstitial cystitis. I think since I grew up being the kid that always had to go to the bathroom. And I took on that identity of always having to be the person that had to pee. I think I developed these symptoms and didn't realize it because I just chalked it up to that's just Carrie being Kari, going to pee all the time. So I was just used to being that's CarrieKari, she has to pee all the time. But those symptoms started to progressively get worse. And I remember I was a physical therapist. I was going to an all regional meeting at the hotel. Fun fact, I was at the hotel where I had my wedding reception. And I remember going to the bathroom and having to go so bad that when I pulled down my pants to empty my bladder, it felt like pee just sprayed everywhere. And to my horror, my coworker, who was in the stall next to me, asked me if I was okay. And I was mortified with embarrassment. I could not believe a, my bladder did that. B, I got pee on the floor. C someone I work with every day was in the stall next to me. I had no idea what that was. I remember that happening, and I remember thinking I didn't want that to happen again. And I think that's when I started going to the bathroom as frequently as possible so that I wouldn't have to deal with that as much. Something else that happened that I think kind of has something to do with it, maybe not is around 2009. This actually has to do with my diagnosis journey. Around 2009, I started having a lot of pain and problems with my periods, and my gynecologist put me on birth control pills. And at that point I was diagnosed with endometriosis. So that's where the misdiagnosis came in. Around 2009, I was diagnosed with endometriosis. So I actually started a blog, and I called it Endometriomi. Oh, sorry, endometrioso, endometrio y me because I just could not understand why I was a relatively healthy person, newly married, was really on the brink of really enjoying life, and why was I stuck dealing with this? But it kind of fizzled out because, plot twist, I actually like to do podcasts way more than I like to write blogs, so that kind of fizzled. But anyways, that was my journey. I was diagnosed with endometriosis, but my bladder urges continued and my bladder urges continued to get worse. And I developed pain in the right lower abdomen, and it would shoot over time. It would shoot down to my thigh, down to my knee. It would happen occasionally, it would be worse during sex, it would be worse during my cycle. And then it got to a point where it was all of the time. By 2010, this pelvic pain on my right lower abdomen or my right lower quadrant area down into that crease area, it's called the ingredinal crease down the inner thigh, the front thigh, that was really becoming constant. And so I went back to my physician about this. Like, I need to get this worked out. I was still treating patients in an outpatient orthopedic setting. I was walking back to the gym from the waiting room, and I literally hit the floor because the pain was so excruciating. And that's when I said, I've got to do something about this. I was concerned about maybe having to take FMLA. I was missing several days of work per week to deal with the pain from my cycle. There was no way to live. I didn't enjoy that. I was worried about my lifestyle with my husband, and I was seeking help. So I undergo the surgery, the laparoscopic surgery, to burn the endometriosis in December 2012. And she said they were going to go through the abdomen first or the belly button first, and they were going to do two small holes on either side of my abdomen, and they were going to do one right at the pubic line. So they were going to do the pubic line and the belly button incision first. And once they saw where the endometriosis was, I was either going to have one or two punctures on either side of my lower belly so they could burn off the endometriosis and slim chance that there may not be any endometriosis, and I would just have those two little incisions. So, of course, when you go under, it feels like you're asleep for 5 seconds. When I woke up, I was in operating and recovery, and I remember wiggling my pelvis, wiggling side to side, trying to figure out, do I have any incisions on the side? And I'm like, Man, I don't feel like I have any incisions on my side. I feel like I just have tape at my pubic area and my abdomen and my umbilical cord. Oh, this is not good. So I, of course, woke up from recovery and I was crushed when I was told that I did not have endometriosis. She could not find it. And the option was to put me on Lyrica or to put me on medication that was going to put me into drug induced menopause to shut everything down for my reproductive system. Hopefully, that would reduce my pain for about six months, and then gradually my system would turn back on and we'll see where we have it. I didn't like either one of those options because it wasn't giving me the answer to my main question, which was, what was the source of my pain? And if I don't have endometriosis, what the heck do I have? So around December 2023, I had a follow up with my primary care. This is where people cross your path in the most beneficial and unique way that can change the trajectory of your life. I had only seen her once before and she told me she was leaving the practice, she was going to another opportunity and she wasn't going to be seeing patients. And I asked her, I said, Look, I'm dealing with this. It's been a couple of years now. I had surgery last year. My gynecologist recommended Lyrica or other medications I don't want to do either. Do you know any other gynecologist I could see for a second opinion? And she said, the least I can do is do that since I won't be your primary care physician anymore. So she referred me to another doctor, another GYN who I was able to see in February 2014. So remember, guys, I was diagnosed with endometriosis in 2010. I started having pain symptoms that I can remember in 2007. So it took three years from that first bladder explosion to when I got diagnosed with endometriosis. That was three years. That was from seven to ten. Then from ten to twelve is when I had that first surgery. And then we're following up with another second opinion in February 14. So we're already seven years into the situation during this initial consultation, of course, he does the pelvic exam. He has me do the consultation in his office, and he listens to me run down the five year history from 2009 when I was diagnosed to when I was seeing him in 2014 of what all was going on. Did not put that recollection that my symptoms really started in 2007 with the bladder spray, because I thought that was just my bladder being my bladder. I was really focused on this pelvic pain. So he slid me over two pieces of paper after I unloaded. So if you're listening to this podcast and you are a patient and you unload out a doctor or medical provider, a good one will listen to you. A good one will listen to what you have to say, because they're like puzzle pieces, and they'll put the pieces together to try to help you figure it out. So after he figured out what was going on with me, I went to see him, obviously, like I said, in February 2004, six months later. So that would have been around November, December, I can't remember exactly. I underwent the pelvic floor or the bladder distension, which seemed to have worked rather well. Then I had a flare up a few years later, about four years later, and I think the flare up was due to the type of work that I was doing, because I was not working in a clinic anymore. I was doing home care. So I was bouncing from house to house. Sometimes you're not in the most ideal place to empty your bladder. So that had an impact on the food that I was eating and how often I was drinking, and that kind of led me to have another flare up. So I underwent a second bladder distension in 2018, and that really was extremely painful. In hindsight, I don't think I should have done that. I probably should have went more natural approaches, but that's just kind of my history. After 2018, I really started to go down a journey as far as educating myself with natural ways to deal with some of my symptoms. But the pelvic pain was significantly less. My bladder control felt like it had gone back to what I was used to as a kid, and I felt like this was kind of where it's going to be. So that was my journey as my experience with having interstitial cystitis. So just as a review, to put it in a nutshell, my first memory of having a urinary experience that was really kind of bizarre happened in 2007, and then I was diagnosed with endometriosis in 2009. I was treated with birth control pills and underwent birth control pills, which got to a point where it didn't help. The pain increased and became very constant. 24 hours pain. Then in 2012, I underwent the laparoscopic surgery, found that I did not have endometriosis, went to a second opinion doctor. In 2014, I was diagnosed with interstitial cystitis, and that's when I underwent my hydro distension. And then in 2018, I had my second bladder distension. I will say that I know what my triggers are with interstitial cystitis. My main triggers are artificial sweeteners alcohol does not bother me. Acidic food, for the most part, doesn't bother me. In the summertime, sometimes I go a little ham with the pineapple and the orange juice, and sometimes that can kind of flicker. But the cool thing, yes, I do have this isn't cool, but yes, I do have ulcers on the inside of my bladder. I was diagnosed with three ulcers on the bladder on the side, next to the uterus, on my right side. So that's what was believed to have been causing that pain that I was experiencing. Now, that's a shot in the dark. Could it be? Could it not be? There's a lot of things that play into it with your nerves and everything like that. But anyways, I do have lesions consistent with interstitial cystitis, as opposed to many people that are diagnosed with interstitial cystitis, and there are no lesions. It's more of a chronic pelvic pain or bladder pain syndrome. I actually have interstitial cystitis, and the interesting thing with it is if I eat something that's off, it doesn't take that long, within an hour or so for my bladder to get triggered, that I've eaten something that I wasn't supposed to, or I've consumed something that might have had one of my triggers. But I know now how to stay away from artificial sweeteners. And I know if I'm going to be going all in with orange juice and mainly orange juice if I'm on vacation or just drinking a lot more in the summertime, I do need to know one of two things is going to happen. I need to increase my fluid intake of flat water, or I just need to stop drinking some orange juice. So that's my experience with having interstitial cystitis. I'm so thankful I was able to get to a point where I no longer had to be on medication. And I have not had chronic pelvic pain since that first hydro distension in 2014. So it's been almost nine years that I have been free of that consistently. And I hope that you learned something. If you have interstitial cystitis, then know you're not alone. You're more than welcome to reach out to me, DM me on Instagram, shoot me an email, contact me, let me know. We can continue to talk. If you want to know how me having interstitial cystitis has led me to become a public health therapist, then stick around for the next episode, because that's what I'll be getting into next. Thank you for listening to the Marrone Pelvic health Podcast. If you want to take the quiz to see if you would benefit from speaking to a Pelvic Health physical therapist, simply go to the link in the description or go to www.moronepelvichealth.com quiz. Again, thank you so much for listening to the podcast. And don't forget to tune in next week for another amazing episode.