Libby talks interstitial cystitis and misdiagnosis, compressed nerves, and the difference between drug dependence and drug addiction.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking talking to Libby about nerve compression, interstitial cystitis, hormone imbalances, and bipolar disorder. We also talk about diagnostic errors and the the difference between drug addiction and drug dependence. Libby does her own advocacy work on instagram, twitter and youtube as the Intuitive Advocate.
This conversation turned out to be super relevant to my own health, since I’m also trying to figure out what role my bulging discs and cervical stenosis might be playing in my overall health.
I want to add a quick content note to this episode and let you know that LIbby talks about suicidal ideation as well as addiction and recovery in this episode.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Okay. Well, why don’t we start at the beginning? So I like to ask people if they were healthy as a kid.
Libby: Now I’m like, “Where is the beginning?”
Brianne: Yeah. Yeah. So how was your health when you were little or when you were growing up?
Libby: It was never good. It was never… I never had good health, ever. My health was always… I always had stomach problems. I always had digestive issues. I just always remember growing up as a child, and I always had stomach pain. I would be nauseous. I always felt really… just I never wanted to… it’s not that I never wanted to eat. I just always felt sick after I ate. And I always had really bad stomach pains, like all the time, and my mom… I remember my mom and my dad always thinking that I just didn’t want to eat, and that I wanted something else. I was at the doctor’s. I was at Kaiser. We used to go on to Kaiser. I don’t know if you have a Kaiser where you’re at, but we have Kaiser Permanente here and they’re very… it’s like a chain hospital.
Brianne: Yeah. I used to live in California, so I did previously have Kaiser.
Libby: So I’m not fond of Kaiser.
Brianne: I wasn’t either.
Libby: And as a child, I was at Kaiser a lot, a lot. They used to have paper… you know, paper records… mine were like this thick. It was like four inches thick. And so I was on antibiotics all the time. I remember drinking the pink… which is amoxicillin, right? Or penicillin basically. And I remember drinking that stuff constantly, like water. It tastes really good. And I remember drinking that all the time. I didn’t know what it was doing to my system until the last few years, when I started getting really involved in my health and in improving my health. But as a child I never felt well. I had really bad allergies. I had very severe allergies. I developed what’s called, um, asthma… like an asthmatic… I had asthma induced from allergies. I don’t remember exactly what it’s called, but I had asthma because I had such severe allergies. And so I had… on three separate occasions, I had asthma attacks that almost killed me because of the allergies that I had that were so severe. I used to get allergy shots as a child. I don’t think do them that often anymore, but back in the 80s, they did a lot. And I used to get allergy shots. Four shots, two in each arm. Every week. For years.
Brianne: Wow.
Libby: Yeah. Years.
Brianne: And did they help, to your knowledge? Was it helpful or was it just a thing?
Libby: I didn’t feel like it did. I felt like it was just torture. That started around the age of, I want to say maybe seven or eight years old, something like that. And I eventually quit on my own, and I was like, “I’m not doing this anymore.” Around the age of 14 or 15, I was like, “I’m done. I’m not doing… this has been seven or eight years. I’m done doing this.” And so that was basically what my health was like. I had a lot of issues with constipation. Um, really, really, really bad. I remember the doctor telling my mom that I needed to take Metamucil for the rest of my life.
Brianne: Yeah.
Libby: “She should be on this for the rest of her life.”
Brianne: Yeah. Fiber, fiber, fiber.
Libby: Yeah. Yeah. Forever. And then really part of my story is that I’m in recovery right now. I’ve been in… I’m very open, like I mentioned to you. And so I’ve been… I’m in Alcoholics Anonymous. I got sober on July 1st of 2009. And part of my story is that I graduated and decided to start doing a lot of heavy drinking and drugs when I was around the age of 16. And I mean, I drank earlier than that, but I started really doing it heavily when I was about 16, 17. And I stopped when I was… 28 I believe I was. And yeah, I was 28 years old when I stopped. And so in between all of those years, health-wise, what happened for me is it completely destroyed my immune system on top of this severe use of antibiotics. Because for years I was using tons of antibiotics for any ailment that I had. I would go into the doctor’s office… my mom would take me to the doctor’s, and it would be, “Here’s the pink stuff.”
Brianne: Yeah. Of course.
Libby: “Here’s… drink the pink stuff.” Yeah, and eventually what ended up happening was at around… I’m just thinking of the main medical stuff that happened to me is I can get to the good stuff here.
Brianne: Yeah. It’s hard to remember when you have lived it all and obviously whatever’s happening right now will feel like the biggest thing and you’re like, “Oh! Other stuff happened.”
Libby: Once I got diagnosed with interstitial cystitis, which is what I got diagnosed with last year, I created a log. I started to create this. This is my notepad. This is my log. And I went back into my history and started to figure stuff out and get my medical records and all sorts of stuff like that to try to unravel this mystery of what this illness is cause there’s so little known about it. And so what I ended up doing… so what ended up happening for me was in 2008… so I was married to my first husband, we ended up getting divorced later on. But I had a few bladder infections, nothing chronic or anything like that. I’ve had ovarian cysts. I’ve had some of those, and those have ruptured. That’s extremely painful. But I really didn’t have anything major. I had a hernia when I was seven… seven or eight years old. That was very bizarre… that was a bizarre thing to have happen. I remember the doctors at Kaiser were mystified as to how a girl had it… and how a little girl ended up with a hernia. I remember them asking my dad when he… he was… he rushed me to the emergency room one morning because I woke up just screaming in pain. I couldn’t move, and they did emergency surgery. And they asked my dad, like, “Is she lifting really heavy things? Is she moving stuff? Like how did she get a hernia?” So that happened. So that caused… so later on in the future, now I’ve found out that caused some scar tissue in my abdomen that I had. So that was a little… you know. So I ended… so I had my two… I have three kids, so my… I know I’m skipping around a lot.
Brianne: That’s okay.
Libby: So my oldest daughter is 16, my middle daughter’s 14, and I have a son who’s just about to be two years old. They were all born via ceasarean section.
Brianne: Okay.
Libby: My oldest was an emergency ceasarean section. I was in labor for almost two days with her. Now that all causes abdominal scar tissue as well, which is a good little side note too. But I had something happen to me in 2008 where I had no idea what the ramifications at the time was going to be to my health. It was huge actually. I had a massive sinus infection and it lasted for a year and a half.
Brianne: And so what first? Cause it sounds like 2008 is a noteworthy year for you. So I just want to say… so 2008… you mentioned you’d had some bladder infections… didn’t seem related, not thinking about them, and then you get a bonkers sinus infection. And this is after your first two kids are born, right? I’m just trying to do the math.
Libby: This is after my first two kids are born. Yes.
Brianne: Okay. So then you get a sinus infection for a year and a half. Oof, and so what was that like in terms of… what were the main symptoms since they can present a little bit differently for different people?
Libby: Severe pressure in my face, I had constant congestion, runny nose, stuffy nose, cause I had both, it would switch around. The pressure in my face and in my head was extreme. I had… I mean, you talk about sinus headaches. It hurt to just lift my head off the pillow and… walk… just to be in a standing position was excrutiatingly painful. Blinking was really, really painful.
Brianne: Yeah. Just like this whole face area, right?
Libby: In your face here… and you have sinus cavities back inside of your head over here above your ears. A lot of people don’t know about those sinus cavities. I forget the name of them, but they’re back over here above your ears and there’s cavities in your forehead. And then of course, the maxillary cavities in your face, right? So that infection lasted… it was a reoccurring infection. So it would go away and it would come back and go away and it would come back. And they treated me for a year and a half with antibiotics and steroids. Prednisone. And it’s worthy to say that during that time I was still heavily drinking and using drugs, and so the antibiotics never really had a chance to work in my system. Eventually what ended up happening was in May of 2009, I had to actually be hospitalized with… and have IV antibiotics and steroids used to reduce the inflammation in my sinus cavities and to kill the infection enough so that they could actually do my first sinus surgery. To even have that happen, I had to be hospitalized for three days and then I was hospitalized… and I stayed in the hospital for two days post-surgery.
Brianne: Okay.
Libby: That’s ridiculous because not very many people have to be hospitalized for sinus surgery.
Brianne: Right, right. And you don’t necessarily think of a sinus infection as something that will lead to hospitalization, but of course… that’s the thing.
Libby: I was there for meningitis. It was ridiculous. It was really, really bad. And so I had my first sinus surgery in May of 2009. I had my second sinus surgery in December of that year because the infection actually came back.
Brianne: Okay. Yeah. And this is in that year and a half window that you gave.
Libby: Right.
Brianne: Yeah.
Libby: Yeah. And so the infection started coming back in… around September and it wouldn’t go away again. And so the doctor decided to do a second surgery in December of that year. So then I started to feel a little bit better. Meanwhile, during that time, I got sober and so life started to get a little bit better. I started to feel a little bit better… you know, symptom-wise. I just started to feel a little bit healthier again. And then around… Oh, so then I almost forgot to mention this. So I had LASIK, PRK LASIK surgery in 2005.
Brianne: Okay.
Libby: I don’t remember the month, but it was in 2005. Cause I was severely nearsighted, very nearsighted. So I had PRK LASIK surgery in 2005. In 2009, in July, just a few… a little while after I got sober, I was in a really massive car accident. And that car accident was… it was really, really massive. And so I’m starting to wonder quite possibly if that car accident did damage to my spine that I never knew about cause I never had imaging done, so put that little side piece over to the side over here.
Brianne: Gotcha. Like physical trauma to your body that didn’t appear to need invasive care at that time.
Libby: Nobody ever suggested imaging to be done to my spine or anything from that car accident. I was hit head on by an SUV and I was in a Ford focus. And the airbag deployed and the chemicals in the airbag actually damaged my corneas and my eyes. And I had an eyepatch on my left eye for six weeks. I was like a pirate. And so that happened. I had a grand mal seizure, I think they’re called, about two months prior to that due to… a benzo withdrawal induced seizure… is what that was called. So I had whiplash happen because of that. That’s also a little side piece. The spine is really, really, really important. Damage to the spine and the neck is a really serious thing. It can cause really serious problems in your body. I’ve done research the last couple of days about it after my imaging tests, after the EMG. So all of those things happened many years ago, right? Nine years ago. And I never thought anything about it. And I never really had any imaging done to my spine up until about a couple of years ago. About five years ago, I started to have a lot of pain in my neck.
Brianne: Okay. And then… can I pause for a second to just… I just want to… for timeline. So basically… 2008 and 2009 a lot happened basically, which we’ve definitely covered. And you said 2009 was the year that you started recovery, and so probably your relationship with your body was changing a lot anyway while all this was happening. And then about five years go by that are kind of… not… with nothing specific to remark upon? Nothing’s changing. Nothing’s making you worry.
Libby: Nothing like very glaring that I should pay attention to until about… I don’t know. Actually, it was probably less than five years because 2009, I want to say, actually maybe two years later, 2011 I started to notice that my eyes… it started with my eyes. I started to… I started noticing changes in my eyes and my vision and that my vision at night started to change and that I needed to wear glasses or something at night to see. My night vision started to just not be very well. Couldn’t see very well at night. So what ended up happening basically was that I ended up being diagnosed in 2018 with keratoconus, and keratoconus is when your corneas basically are not… the shape of the cornea starts to change, and it starts to change very drastically over a very short period of time. Some people are born with it. Sometimes it develops later on in life from eye trauma… from trauma to the eye.
Brianne: Gotcha.
Libby: Which happened to me in the car accident. Just never put it together until… or it could have also happened from the LASIK surgery that I had done many, many years prior as well.
Brianne: Right, and it’s impossible to know. Of course.
Libby: No doctor… no ophthalmologist can tell me for sure, “This is what caused this.” They’re guessing now as to… it could have been the LASIK surgery and it could have also been the car accident. But now I have keratoconus in my eyes, so I actually have to wear very, very specific, very expensive contacts in order to see because with glasses, I can’t see very well at all. I would have wear… I just can’t see very well with glasses. I have to wear…
Brianne: They don’t track well with your pupils, probably. Yeah.
Libby: No, not at all. So I have to wear really specific contacts in order to see. So there’s that, and that all has to also do with the nerves from your spine into your brain, right? And nerves and stuff. And so… which might have to do with the car accident that I was in.
Brianne: Right. Yeah. Big shrug.
Libby: Yeah. And so there’s that. I was diagnosed with that last year. And then I got diagnosed with interstitial cystitis on October 31st of last year… of 2018.
Brianne: Okay.
Libby: So. The bizarre thing was that is that… so I’m going to give you timeframes.
Brianne: Okay. That’s good. Yeah. Tell me how we got there.
Libby: Okay. So one of the first things that happened was that in… so my son was born on May 22nd of 2017
Brianne: Okay.
Libby: Okay. On… about four… he was about five months old or so when I started to notice that I felt really different. I just felt really, really, really different. Like my libido was gone. My energy was gone. My… I even was… I even felt really annoyed when my daughters or my husband would hug me or touch me. I just… it was very strange symptoms. I couldn’t orgasm at all. And so I finally insisted that my OB/GYN do a hormone panel. We did a hormone panel and my testosterone level was at the low side of normal. It was normal, but it was on the low side of normal, so he decided my estrogen level was… looked a little bit strange too. It was also normal range, but on the low side of normal.
Brianne: Also low estrogen. Okay.
Libby: Still in the normal range though. So a lot of doctors won’t treat you because… in the normal range, right?
Brianne: Right. Lab ranges are… I feel like we could have a whole other long conversation about lab ranges and functional lab ranges, but…
Libby: Ranges are… the way that they’re created is completely ridiculous. If people only knew how ranges are created… It’s totally ridiculous
Brianne: And how different they are from lab to lab. I feel like that’s one of the things… when you find that out, you’re like, “Oh, I thought that this was a medical guideline.” Like, no, it’s not a medical guideline. It’s just the lab saying what is normal in their own results. Anyway, it matters a lot for stuff like hormones, which could make a huge difference. And then I also had one more question before you tell me more of this. So you mentioned specifically not liking being hugged by… you said your daughters or your partner, and I feel like that… one thing people talk about a lot after having kids like…. being touched out. Had you experienced parts of that after your other two kids or did it all feel new? No? Okay.
Libby: I never experienced anything like that before. No. It was really bizarre and it was really actually kind of scary.
Brianne: Yeah like drastic.
Libby: Yeah. Like it was so not me at all that I think I knew something was seriously wrong. I knew something was seriously wrong.
Brianne: Yeah.
Libby: And so he did the hormone panel… so he ended up putting me on a testosterone cream.
Brianne: Okay.
Libby: Okay. I use a testosterone cream. You rub it in your thigh every day, right? I did that every day from April 25th of 2018 until approximately June of… I picked it up… Oh, no! From the previous year from 2017… from probably about… I think it was… he was about five months old, so figure May, June, July, August, September, October. So probably from around October of 2017 until about June of 2018.
Brianne: So like nine months I think that is. Quite a while!
Libby: Okay. Now this is where it starts to get bizarre. Okay? On June 26 I went to the urgent care. Here I’ll go… I’ll go exactly according to the timeframe so that maybe it’ll make it easier for you.
Brianne: Okay.
Libby: Okay. Let me look at this really quick. On June 21st of 2018, I went to a concert with my oldest daughter.
Brianne: Okay.
Libby: Okay. We were in the mosh pit. Well it turned into a mosh pit, and a lady, a human being was… got thrown and she landed on top of my head, like this. On top of my head,
Brianne: Like flat, so probably compressed your spine a little bit. If there’s a way… okay. That gives me the heebie jeebies.
Libby: It was extremely painful. It stunned me completely.
Brianne: Yeah
Libby: Like I stood there one minute and the next… protecting my daughter because I knew what the situation was there. The next minute I just felt excruciating pain in my spine and my neck and my back. And I heard something pop and crack.
Brianne: That’s never good.
Libby: No. And I look down, and I, you know… my eyes were closed. I almost feel like I may have blacked out for a few seconds. And I looked down, and I see a woman on the ground, and I realized she fell on my head. And then everyone around me was like, “Ma’am, are you okay?” Cause they’re all a bunch of young kids. And so that was June 21st. June 26th, five days later, I’m at the urgent care complaining of bladder symptoms.
Brianne: Okay.
Libby: Urgency and frequency and pain from my lower back to my bladder, like radiating pain. There’s blood in my urine, that they can’t figure out where it came from. They send me to do a CT scan. Everything is normal in my CT scan, except that there’s a cyst in my liver, which I still am not sure how the heck that got there. Later on, the second CT scan shows that my liver is enlarged. I’m still trying to figure out what the heck that’s about.
Brianne: Yeah. Can I pause you for one more second? I just realized I didn’t ask. So you had taken testosterone for about nine months leading up to that. So before the bladder symptoms start, before the concert injury, did you notice a difference with the steroid? They’re not steroids. Sorry. Hormone therapy.
Libby: Yeah.
Brianne: Yes. Noticed the difference.
Libby: Huge difference within about, I want to say a month or so, I noticed a huge, huge, huge difference. I felt like myself, again.
Brianne: Of all those things. Okay.
Libby: All the symptoms went away. I felt totally normal. Oh, there was a very big thing that I totally forgot to mention to you. I got diagnosed with idiopathic hypersomnia in August of last year as well.
Brianne: Okay. So…
Libby: Are you familiar with that diagnosis?
Brianne: I would say… okay, I don’t think I’ve heard those words together, but I know what they both mean. So it sounds like you need to sleep a lot and they don’t know why.
Libby: Basically. For me… I also have bipolar two disorder, which I also got diagnosed… everything happened for me within the last four years. I got diagnosed with keratoconus, bipolar two disorder, and idiopathic hypersomnia, and interstitial cystitis always in the last four years.
Brianne: Yeah. Which is like, gosh, I mean, everything is frustrating. Some of them, it sounds like, had just… like they had just onset at that time. So especially say with your eyes… it’s not like you were living with this condition for a long time undiagnosed, it had kind of happened. For something like getting a bipolar diagnosis… did it… when you… were you seeking mental health care specifically or did that kind of come about?
Libby: I had a complete nervous breakdown on… and mental breakdown… just completely… it was really bad… the day before my middle daughter’s birthday in… it was July 6th of 2014.
Brianne: 2014. Okay. So this was around the five year mark that we had kind of got to, and then I think I distracted us from, yeah. Four year mark. Yeah. So in that middle space…
Libby: So that day I went to my therapist, and I talked to my therapist. He referred me to a psychiatrist who was able to talk to me and see me the very next day actually, for an hour and a half. She actually saw me. I was in really bad shape, and she took a full history of my past and my childhood and everything. And she diagnosed me for actually the second time with… it was my second time being diagnosed with bipolar two disorder. I was diagnosed earlier that year, but with… by a psychiatrist who talked to me for like 20 minutes, and I just felt like, “What do you… what can you possibly know in 20 minutes?” And he wanted to put me on lithium and I was like, “You’re out of your mind.” She has me on different medications that are not that strong.
Brianne: So like that did not feel right for you.
Libby: The lithium? No, I was like, “Even if I do have bipolar two disorder, which is quite possible, lithium is definitely not the medication that I need to be on. Absolutely not.” So there was the bipolar two diagnosis in 2014, and then every other diagnosis that I got was in 2018
Brianne: Right. Okay. So then that brings us back. Okay. I love timelines, just cause for me, it’s so interesting how these things end up stacking. So that diagnosis, and then, I think you just said this, but… so you… did you start on a medication at that time for the bipolar or… was that your treatment protocol? And that was… did you find that helpful?
Libby: Yeah. Yeah. I couldn’t stand the side effects at first, in the beginning, but I did those. And then I only went off my meds once, when I tried to get pregnant. For some reason my brain told me, “Oh, you should get off of your meds so you have a clean body.” It was completely ridiculous.
Brianne: So relatable though, like that is one… that idea is so strong in the culture.
Libby: It is. It’s completely ridiculous. I have a completely different way of thinking about it now. I got off my meds. I got pregnant. I proceeded to have a miscarriage six or seven weeks later, which devastated me completely. I was just beside myself… depressed and still did not think that I needed to get back on my meds. It wasn’t until about maybe two or three months in… post-miscarriage that I became so suicidally depressed, which is… that’s bipolar two.
Brianne: Yeah.
Libby: That’s bipolar two classic… that finally with the encouragement of some of my friends and my husband… not so much my family because they’re not always the most supportive people… that I decided to get that… and my psychiatrist and my therapist, that I decided to get back on my meds and I’ve never gone off of them because it’s a clear fact that… now my understanding about mental illness is that our… I choose for myself, I guess. My brain has an illness just like my other organs can have an illness. And so I treat my brain with medicine just like I would treat another organ of my body with medicine.
Brianne: And did you find that having that experience with what I’ll call physical health changed that once you started to… or did that kind of develop all at once? Like when you go… oh, so you’re saying that…
Libby: That different thinking?
Brianne: Yeah. Did that kind of come about because of other stuff with your body or did that just come about over time? Does that make sense?
Libby: I think that came about because of the experience that I had being off of my medications, my psych meds for two or three months, and experiencing the symptoms… the depressed… the suicidal depressive symptoms that I experienced, and knowing at the same time that there was a tiny little piece of my brain, not even my brain, my mind that was thinking… that had thoughts that were like “This isn’t really you and what you actually want to do. You don’t actually want to go run across the freeway. You don’t really want to go stand in front of a train. You don’t really want to go.” You know what I mean? Like you don’t want to go do these things. This is your illness. This is part of your brain that doesn’t have the correct chemicals to… how can I say it? This is the part of your brain that doesn’t have the correct chemicals in order to allow your mind… the mind part of your brain, if that makes sense, to function properly so that you don’t have these thoughts.
Brianne: Yeah. And life without these thoughts for you is possible with medication, and that’s, that’s just a choice that you get to make.
Libby: I was like, this is my choice… whether or not I decide to go back on these medications and use them so that I can stabilize myself so that I don’t let my bipolar two diagnosis destroy my life. And so I don’t end up self-medicating with drugs and alcohol again.
Brianne: Right. Right.
Libby: Because that was part of why I used, and how I ended up becoming an alcoholic and an addict as well.
Brianne: Yeah.
Libby: Aside from just also environmental and social situations, you know. Just all that kind of stuff too. So… and then once you’re an alcoholic, you’re an alcoholic kind of for life, so you can’t really go backwards. So I was like, “Okay, I’m not… I mean, it is what it is now.” And this is just… and there’s some people that I guess can… you know, I’ve heard, and I’ve done some research… can treat their bipolar with like… holistically. That’s fantastic. I’ve chosen not to try that avenue right now. Maybe I’ll try it later on in life, but as of right now, I would not mess with that.
Brianne: Yeah. And that’s… that I think because… I think this is true for mental health and physical health… is that there are so many corners of the internet that tell people like all you have to do is eat a clean diet and exercise and get off your meds, and then everything will be perfect. But like… and I also… I believe that that works for some people, absolutely. For some people and… but the amount of guilt that it can create when it’s not possible in your life to make those changes or whatever… or they just don’t help is… it’s so unnecessary.
Libby: There’s a huge influx of people that are very pro health and clean eating and exercise and all of that in order to have good health, which is fantastic. That’s true. However, we have been given medications, I believe, certain medications, right? In order to further… I don’t know… how do I word this? In order to further aid us… in order to achieve optimal health. And so why would you take that out of the equation if you’re trying to actually achieve optimal health? Why not add that to the equation of a balanced diet and exercise regimen, a meditation, prayer maybe, even the social aspect of it when it comes to having healthy friendships, nontoxic relationships? I mean, there’s a huge dynamic that actually is involved in having a healthy body, and a healthy lifestyle. And so you really have to take every single piece into the equation and not just… people focus I think a lot on just one aspect instead of the whole. Everything. There’s a whole picture that has to be looked at and a lot of people just focus on one part of it instead of the picture. There’s a whole page. So a lot of people that have chronic pain, and that are dealing with that, are focusing a lot on just one aspect, which is their immediate physical health without the other aspects, which given it’s very difficult to focus on the social aspect of your health because you have a chronic illness. And so how do you focus on the social aspect of your health? You can, it just takes some practice.
Brianne: Yeah. It’s hard!
Libby: And it’s also very, very, very important to focus on the social aspect of your health because it has a lot to do with your well-being. I mean… it’s… I forced myself sometimes to get out of the house and go hang out with friends or something. It’s really important to your well-being.
Brianne: Yeah, definitely. Okay. So I do want to go back to the timeline, although I think that was really important. So back in the timeline you were talking about… so now there’s blood in your urine after… this concert.
Libby: Right? So I had blood in my urine and that was five days later after the concert, right? So I bled in my urine. I had the pain. I had frequency. I had urges. I get all this stuff. They didn’t know what was wrong with me. They had no idea if I was having a bladder infection, if I had a kidney infection, if I had an ovarian cyst rupture, like what was… they had no clue. They ended up sending me home with antibiotics. With… they wanted to give me prednisone and I was like, “Absolutely not. Why would I take a prednisone pack? Like for what reason do you have? Um, no.” And then they ordered a CT scan, which I went and did. Eventually what ended up happening in June was… it lasted about… I want to say like two weeks or something, and it disappeared. Just disappeared completely.
Brianne: Just all of the bladder symptoms?
Libby: Disappeared.
Brianne: Sure.
Libby: And then it all came back at the end of September.
Brianne: Okay.
Libby: September 17th to be exact, and on September 20th I went into the urgent care again with all of the same problems, all the same symptoms, and they did the same thing. They sent me in to do a CT… actually, no. On September 20th they referred me to the emergency room, and I went to the emergency room from the urgent care and had all the tests done at the urgent care. They did a CT scan. They did… they did all that stuff. And I remember that day, they made me feel like I was a drug addict because I asked them for pain medication cause I was in so much pain.
Brianne: That’s so…
Libby: That’s awesome.
Brianne: That’s like a whole other horrible thing to navigate, right.
Libby: How about that, right? Okay. So then… oh, I can’t wait to tell you about this. Okay. So in… I have to make a video at some point and update my YouTube channel and be like, “This is what’s actually wrong thus far that I’ve finally figured out.” So on October 31st I saw the first urologist that I had ever seen who diagnosed me after just speaking to me for, I dunno, half an hour, with interstitial cystitis.
Brianne: And had you heard of that before?
Libby: I hadn’t… I had heard of painful bladder syndrome.
Brianne: Okay.
Libby: My primary doctor told me back in June that she suspected that I might have painful bladder syndrome. So I went home being the medical researcher that I am, and looked it up, and read about painful bladder syndrome. And I saw the words interstitial cystitis, but I never read specifically about interstitial cystitis. I read about painful bladder syndrome, a little bit, and not even too much because I just was like,” I don’t have this. This is ridiculous. Like there’s no way. This is like an incurable disease of the bladder and just, it’s… phew… kind of ridiculous. There’s no way that I have this thing.”
Brianne: Yeah.
Libby: “I probably have like…” cause I had been told for a few years after having my children… I had heard the words overactive bladder at the doctor’s office. I had heard the word incontinence a couple of times. They had given me Detrol LA a couple of times. They prescribed me that. I took it like once or twice, I think… for a short period of time, and then I was like, “This isn’t really doing very much” or… and I just stopped taking it. And there was kind of a few things that I started to notice later on after my diagnosis that I kind of started to piece together over my history. Like, “Oh, I guess maybe I kind of have had like some… you know…” and I called them bladder issues when in reality, they had nothing to do with my bladder. I found out later, and I’ll tell you in a minute. It’s a very interesting story. So he, on October 31st, diagnosed me with interstitial cystitis. He did… he put me on two medications. He put me on Europol three times a day and tolteradyne, which are just antispasmodic medications. And then he did a urine culture for bacteria that he felt was very rare to have, but he thought, “Let’s just test you for this bacteria and see if it comes back.” And I just was like, “Okay, whatever you think, I don’t know what’s happening here. So whatever you think.”
Brianne: Yeah.
Libby: Okay. So as it turns out, he tested me for bacterias that are called mycoplasma and ureaplasma. Those tests came back a few days later. Positive.
Brianne: In a urine culture?
Libby: The urine cultures came back a couple of weeks later, positive for mycoplasma and ureaplasma. On November 2nd he did a cystoscopy and the cystoscopy showed what… so what he told me was that it looked to him like I might have something called Hunner’s ulcers in my bladder. Based on him telling me that I went to go get a second opinion. What he actually put in the computer system. I found out months later, months later. Months later being a few days ago.
Brianne: Okay. Yeah.
Libby: Okay. I found out that what he put in the computer system is that my bladder looks completely freaking, effing normal.
Brianne: Okay.
Libby: Because he told me though that it looked like I had Hunner’s ulcers and I didn’t know what the hell that was.
Brianne: Yeah so you Googled it.
Libby: They use something called a hydrodistension surgery where they put saline in your bladder and they blow it up, and they stretch it out in order to see if you really do have these Hunner’s ulcers and it’s a very invasive surgery. I was like, “Ah, okay.” And he says to me, “My surgery scheduler is going to call you to schedule the surgery.” I left his office and was in tears. Cause I remember the man saying to me, “I’m so sorry, Mrs. Fortman, to tell you that you have interstitial cystitis. It’s an incurable disease. It’s very difficult to treat, but I can give you…” And I just was crying and I had my son in the stroller there. He was 18 months old, and I just sat there crying. And I go, “There’s nothing you can do to help me?” And he goes, “I can give you a rescue installation today.” And I go, “What’s that?” He said, “I put medicine in your bladder through a catheter and you have to hold it in your bladder for two hours.” Now, at the time that I had gotten to his office on October 31st, I was peeing every five to 10 minutes.
Brianne: Yeah. So that’s the frequency/urgency thing.
Libby: I’m like, “How am I going to hold medicine in my bladder for two hours when I’m peeing every five to 10 minutes?” I had to keep leaving his office to go use the restroom. It was ridiculous.
Brianne: Yeah.
Libby: So on October 9th, I go meet with another doctor who’s actually a very, very prominent doctor here in Los Angeles and Southern California. So she’s a researcher as well. So there’s something called the MAPP study. The MAPP study for interstitial cystitis is the first study that is actually talking to the patients, and sending them surveys and things like that to do. And it’s the first study of its kind in the United States that’s studying pelvic pain and interstitial cystitis/painful bladder syndrome. It’s a really in-depth multi-disciplinary study. She’s one of the researchers on that study, my second urologist.
Brianne: Okay. And this is like immediately after, basically? Almost a week after?
Libby: Basically a week later.
Brianne: Okay.
Libby: I go in to see her, and she does a cystoscopy. She tells me my bladder looks completely normal. She proceeds to tell me that I need to continue to do the installations… the bladder installations, and she puts me on a series of six, once a week. I proceed to do those because I don’t know any better.
Brianne: And what does that entail again?
Libby: That is putting a catheter into… through your vagina… through your urethra, right? Into your bladder, and they install a combination of different medications into your bladder, and you hold them in your bladder… the medications for… it’s… extended period of time.
Brianne: Two hours or? Okay.
Libby: Some doctors will tell you 15 minutes, some will tell you 2 hours. Now this is the part that is really interesting is that the AUA guidelines, the AUA is the American neurological association, according to the AUA guidelines, they state 15 minutes in their guidelines. Doctors will usually tell you two hours. Three hours, an hour, half an hour.
Brianne: Yeah. So all over the place. And of course, when frequent urination and urgency is one of your problems, that would be extremely uncomfortable, even if you can do it. Yeah.
Libby: Right. Painful. Very, very, extremely painful. Extremely painful. Okay. So I have a series of tests done. I had a pelvic MRI, my first pelvic MRI done on December 8th. I don’t know that you want me to go through every single timeline but… because I have a lot of dates. I have a lot of dates. I saw an allergist on December 3rd who did an allergy panel to check all my immune globins. On December 10th I saw a rheumatologist who ran more blood work. On December 13th I did some stuff for the MAPP study. I kept having mycoplasma and ureaplasma was repeatedly coming back, and I was repeatedly being treated for it with antibiotics.
Brianne: And did you still have blood in your urine at this point, or was it mostly the… yeah? Sometimes? But the urgency/frequency/pain thing was the main…
Libby: Now as I was doing the bladder installations, every week that went by I was getting worse. My pain was getting worse. I basically got to a point where I wasn’t able to walk. I wasn’t able to sit. I wasn’t able to stand. I was basically stuck on my bed laying on a heating pad or an ice pack for the majority of my waking hours.
Brianne: Okay.
Libby: I couldn’t really lay on my side, on my back. I just had to lay on my stomach, which is really bad for your lower back.
Brianne: Okay. Yeah. It’s like a weird… you can get into a weird spinal posture there.
Libby: Right, right. I eventually got sent to pain management because my urologist, the second urologist, couldn’t continue to prescribe me opiates because of all the fantastic opioids, you know, ridiculous… going on.
Brianne: Another rat’s nest of complicated political junk.
Libby: Right. On December 19th, this is wonderful. On December 19th, I had three MRIs done all at the same time.
Brianne: Okay. Of different areas of the spine, kind of?
Libby: Yes. I had one of my neck. I had one of my lower back, my lumbar spine, and I had one… it’s kinda… I think it’s called a saddle MRI of your pelvis.
Brianne: Okay.
Libby: Now I went to see a third urologist and a fourth urologist and a fifth urologist as well.
Brianne: Were these all in your network also? Were you able to get referrals within Kaiser?
Libby: No. No. This isn’t with Kaiser. This is with UCLA.
Brianne: Okay. Right. Kaiser was your childhood provider.
Libby: Yeah. No. Yeah. This is… all these urologists are with UCLA and with Cedar Sinai.
Brianne: Okay. And so they’re all covered by your primary insurance? Or as covered as they can be?
Libby: The third urologist that I went to go see was with USC, and she was actually… I’ve been dying to say this to somebody… I wish I could tell you her name. I feel like I probably shouldn’t say her name. She is one of the lead professors on the MAPP study, and she never even touched me. She never examined me. She never took my blood pressure. Nothing. That was out-of-network.
Brianne: Yeah.
Libby: I had to pay for that out of pocket.
Brianne: Yeah. And you’re like, “Well, that was not helpful, but I guess now I know.”
Libby: Yeah. And all she referred me to do was to continue… was to go back and continue to do the installations with my second doctor.
Brianne: Which don’t seem to be helping, but not much time has passed.
Libby: Right and they were making me significantly worse. Around Thanksgiving time, I started to have numbness set in… where I started to go numb around my bladder area and my abdominal area, my pelvis, my groin area, my inner thighs, my upper thighs, my lower back.
Brianne: Okay. So like radiating?
Libby: Radiating numbness. Eventually as the months and the weeks progressed, the numbness by January started to spread to my left leg. January 4th, I was hospitalized with complete… dead… my left leg went completely dead. It was just dead leg, but it was also very painful.
Brianne: Okay. So like, you weren’t able to move it? And… or like you couldn’t…
Libby: It was dragging. I had to drag it around.
Brianne: And mostly numb to the touch, but painful?
Libby: You know, like tingly? Like really… like kind of when a body part falls asleep?
Brianne: Yeah. I have learned that that is called parasthesia.
Libby: Oh, is it?
Brianne: Yeah.
Libby: I didn’t know the name of that! Para…
Brianne: Parasthesia. It’s a type of neuropathy. So neuropathy being like a nerve problem and parasthesia… it seems, I think… it might be broader than this, but pins and needles is given as one of the specific sensation examples. So I’m excited when I do know the names of things.
Libby: Yeah, I know. Me too. Well, I learned where that came from on… well I finally figured out what caused all of that on Thursday.
Brianne: Yeah. So then are there any… okay, so you had lots of other specialists that weren’t super helpful. Was there any other… big news or things that you tried up until last week?
Libby: Yeah, the fourth urologist that I went to actually did some work, and he actually figured out that I had a hormone imbalance again, and he put me on hormone replacement therapy for testosterone and estrogen. My testosterone level was so low that it was almost undetectable… my DHT level, my testosterone level was extremely low. There’s several different sex hormones, right? The endocrine system has, I think seven glands, and… don’t quote me. It’s either seven or nine.
Brianne: But a lot.
Libby: A lot. Yeah. For all of the hormones that are secreted into the body, but the sex hormones, right? There is testosterone, there’s DHT, there’s estrogen, progesterone. There’s quite a few of those.
Brianne: And just as an aside, like there’s different forms too, right? Like estrogen has at least three forms. Like there’s so much more complicated junk in there.
Libby: Yes. Right. Yes, and doctors generally will only do a screening test when they test your hormones. They don’t do a full hormone panel and check for all of the hormones. He did a full hormone panel and checked all my hormones. My DHT level was non-existent… which is a type of testosterone level, so he put me on… which can increase and cause pelvic pain. That in and of itself can be a cause of pelvic pain, which very few urologists know about or will even draw blood to find and treat.
Brianne: Right.
Libby: He found that. He started to treat me on that, and he found out that I have a pelvic floor dysfunction.
Brianne: Okay.
Libby: So he was the first urologist that said to me, “You don’t have interstitial cystitis. You have painful bladder syndrome maybe, and you have a pelvic floor dysfunction, for sure. And you have a hormone imbalance. That’s what’s causing your symptoms.” And I looked at him and I said to him, “There’s no…” I’m sorry, but he said to me… I said, “There’s no fucking way that I don’t have interstitial cystitis. Like, there’s no way.” He also doesn’t believe that IC exists though. So it’s kind of like… you know, I don’t know how you can not believe that IC exists. You know, cause there’s some doctors that are like that, but he was the only doctor that said that to me. And as it turns out, he’s basically kind of right because I don’t actually have… I was completely misdiagnosed, but that’s my story. I was completely, completely misdiagnosed. Completely, by several doctors, several urologists, and not just urologists, prominent urologists who are researchers on an actual fucking… on an actual client… a research study that’s taking place in our country. One of the lead professors completely misdiagnosed me, completely overlooked the fact that I had complete spinal stenosis in several of my discs in my spine, and that’s what’s causing my symptoms on top of…
Brianne: Yeah, and this is what you just learned, right?
Libby: …and hormone tests. Yeah. That’s what I just figured out. That’s my diagnosis… that’s one of my diagnoses. That’s one.
Brianne: And so how did you get there? Like who ordered these most recent tests?
Libby: My neurologist. My neurologist ordered the tests on December 18th. December 20th was when all the MRIs supposedly came back normal… is what I was told… and that I had a bulging disc between my C4 and my C5 along with muscle spasms. That’s all my neurologist told me on December 20th. When I got my actual records back from my doctor’s office on…. what was the day that I got my records back… was on Monday of this week, right? Was when I found out that I actually have… hold on… my neurologist didn’t tell me the truth either. He didn’t tell me the full story either.
Brianne: Yeah.
Libby: He told me that I had a bulging disc between my C4 and my C5.
Brianne: Which is like. Not super noteworthy. Yeah.
Libby: Every… a lot of people have bulging discs and nerves in their neck. That’s not that big of a deal. No. My actual results show that I have a two millimeter disc bulge between my L3… and I have facet… a facet bulge between my L4 and my L5 along with it. So my facet is completely fucked up. On top of the fact that I have a disc bulge between my… at my L3 level or between my L4 and my L5 I should say. I have a disc bulge between my L5 and my S1 and I have reversed… I might not say this right, lordosis.
Brianne: Lordosis.
Libby: Yes.
Brianne: I’m repeating it cause I’m going to have to Google it later to make sure I spell it right for the transcript. I don’t care if it’s pronounced right or not.
Libby: So repeat it. So I have… so basically what my problem is, is that I have a bulge in my neck between my C4 and my C5. that’s… I also have muscle spasms in my neck between… in that disc bulge. The MRI also showed… the lower lumbar MRI showed that I have a two millimeter disc bulge at the L3 section. I have facet degeneration at the L4 and L5, and I have a disc bulge at the L5 and S1. I have a reversed lordosis. So the curve of your lower back, mine’s doing the opposite. Okay. You have… it’s called lordosis, right? So the curve of your back is supposed to curve a little bit, right?
Brianne: Right. Like in, out, in kind of.
Libby: Like an S shape. If your curves too much, then it pushes your pelvis forward too much, which can cause problems to your bladder. If it goes too far back and it’s shaped like this, that can also cause a lot of problems in the way that you walk and the way that you stand. And that can also cause a lot of problems to your bladder, your intestines, your bowels, right? Mine is starting to shift this way. It’s not like this, it’s not shaped like an S like it’s, suppose to. It’s not straight either. I don’t have a straight back, a flat back. It’s starting to go this way.
Brianne: Okay.
Libby: It’s starting to reverse itself.
Brianne: So that would mean that your pelvis is like forced forward kind of?
Libby: Yeah.
Brianne: Okay. Okay. And so you just… ooh!
Libby: Sorry, I just had a call. Yeah. It means that my pelvis is starting to push forward. Now this is the other thing that I started researching is… the nerves that are located at those junctures. Right? The nerve of my S one is completely compressed. That’s a nerve root.
Brianne: And so…
Libby: That’s the nerve root.
Brianne: Yeah. For like radiating down. Right? From…
Libby: Do you know what that causes? When you have a compressed nerve right there.
Brianne: Tell me.
Libby: It causes the numbness that I’ve been experiencing in my abdomen, in my lower back, and in my left leg.
Brianne: Yeah.
Libby: So when I was hospitalized January 4th and they couldn’t figure out what was causing my numbness, all they had to fucking do was look at the MRI results!
Brianne: Yeah. In your file.
Libby: And actually really look at them and actually read them, and they would have seen, “Oh, this patient has a disc bulge at three separate areas in her spine, her neck, two points in her lumbar spine along with the compressed nerves.” Because when he did the EMG test, what it showed is that I have a compressed nerve.
Brianne: Okay so that’s totally… that can be documented by itself.
Libby: Yes. That was documented, that EMG test. The EMG showed that I have a compressed nerve. I have acute L5 radiculopathy.
Brianne: Okay.
Libby: Compressed nerve. On the left. that’s what the EMG showed.
Brianne: Yeah, and so this is brand new information, obviously.
Libby: Information that I just received on Thursday, and when I looked all of this up and Googled everything and started researching everything, I was so pissed off because I sat there and thought to myself, “Not only did these fuckers completely misdiagnosed me, but they…” A.) The second urologist completely put me through hell because she put me through bladder installations for no reason. She was… A.) She was treating a healthy bladder. For what reason? She was putting medication into a healthy bladder. That should have never been done to begin with.
Brianne: And it’s like, probably just to say that something was done. Right? Like…
Libby: Yeah, but all my medical records… when you go through my notes, my medical records, you can see that she logged that I was telling her that I was getting progressively worse.
Brianne: Right.
Libby: So why… why didn’t she change the treatment?
Brianne: Yeah, totally. Totally. Um, gosh. Okay. So I would be incredibly mad. Also, I…
Libby: Yeah, I’m really upset. That’s why I’ve been talking to Cedar Sinai… to the… I have an appointment, a phone appointment to speak to the director, the medical director at Cedar Sinai, in a couple of weeks.
Brianne: Yeah. To be like, “Hey, let me tell you what happened.”
Libby: Because this is one of the other things that I want to mention that’s really important is that there are IC/painful bladder syndrome phenotypes.
Brianne: Okay.
Libby: Dr. Christopher Payne is the one that created the IC/painful bladder phenotypes. They’re really important because what they do is categorize patients according to their symptoms and then also give them a treatment plan according to each individual person’s symptoms. Because with IC, what happens is that everybody presents a little bit differently from everybody else. So some patients have what’s called Hunner’s ulcers in their bladders.
Brianne: Right. Which was what you were looking into before.
Libby: Right. Which I never had. Those patients have to have their ulcers cauterized. A lot of urologists will not cauterize the ulcers. They’ll do the hydrodistension surgery, which is what you need to do to identify the Hunner’s ulcers, but they don’t cauterize them at the same time that they do the hydrodistension surgery. Why? That’s AUA guidelines.
Brianne: To do both?
Libby: That needs to be done. Yes. So urologists today aren’t… A.) They’re not following the guidelines as… the way that they were set, which… they were created the last time in 2011. Some of them were amended in 2014. We’re now in 2019. It’s completely ridiculous that it’s taken this long.
Brianne: Is it also true… this might just be because of what my social media is. Is IC more common in women? Yeah? Like a lot more, I think.
Libby: Yes. Women suffer from interstitial cystitis on average, about 80 to 85% more often than men do. Men, about 10 to 15% have interstitial cystitis, and more often than not, when men are being diagnosed with interstitial cystitis, it’s generally a pelvic floor dysfunction that they actually have, not true interstitial cystitis. True interstitial cystitis is Hunner’s ulcers in the bladder.
Brianne: Okay.
Libby: Then there’s four other phenotypes that are categorized as painful bladder syndrome or bladder pain syndrome, and those four phenotypes have… there’s four other phenotypes, and those other four phenotypes… all five of those phenotypes need to be addressed. And they need to be really added to the AUA guidelines so that the urologists are mandated to use those phenotypes when they diagnose their patients that are coming to their offices because then patients like me who come in presenting with what looks to be bladder symptoms aren’t thrown into the umbrella of interstitial cystitis. Their options need to be investigated so that they can be properly diagnosed.
Brianne: Yeah which is a huge problem. I feel like across the board.
Libby: With medicine? Yeah, there’s no investigation done.
Brianne: Well and there’s no feedback cycle, right? So on the one hand, a lot of the time, and I hear people say this a lot. They’re like, “It took however many years for me to get diagnosed,” but along the way, a lot of doctors who didn’t know what was going on. I don’t blame those individual doctors because… I mean, in your case with the study, that’s a pretty specific situation. But a lot of the time, you’ll have like a general practitioner who doesn’t have the information, so they don’t even know what specialist to send you to. And it’s an opportunity for them to learn. Definitely. But it isn’t necessarily fair to expect that they would already know, but we don’t have a feedback system. So if you… you know, your first urologist or your second urologist they are… there’s no built-in system where they will get flagged to know what actually ended up happening. And that’s messed up.
Libby: Yeah. But however, what I can tell you is that in… what country is that? Hold on, let me tell you what country it is in a second. There was a meeting that they had… a whole bunch of important AUA… There was a 2018 annual meeting in Florence. I think it’s called the earth science system. I’m not exactly… it was the ESSIC 2018 annual meeting in Florence, Italy. It was November 29th to December 1st and the… this is what’s incredible… is in the Netherlands. This is what I found an absolutely incredible when I started reading about this was that there is an office there called the… what’s the name of it? There’s a clinic there. I can’t find where I wrote the name of it, but there’s a clinic there, and the way that they diagnose patients who might have interstitial cystitis is literally with a multidisciplinary team. A team of doctors and the team of doctors includes a pelvic floor physical therapist, a gynecologist who makes an analysis of the hormonal situation for female patients, a dietician who checks for allergies and bowel problems and gives dietary advice, the nurse can also perform a PTNS, do an installation, teach the patient to do an installation at home, and all of this is monitored really closely, and the clinic even can refer you to a sexologist, a psychologist, a neurologist, a pain center, a rheumatologist, and an immunologist. And that’s all done at one, one center, in the Netherlands.
Brianne: It’s like the dream!
Libby: If that can be done in the fucking Netherlands, why can’t we do that in America?
Brianne: Yeah.
Libby: Why? What’s the reason that the AUA cannot mandate this to happen in America for interstitial cystitis? It would be completely… if we had that type of protocol in place for interstitial cystitis along with the IC phenotypes, that Dr. Payne has come… has created, and they were guidelines? In the AUA. The interstitial cystitis problem in this country would, would be eradicated.
Brianne: It would be so different.
Libby: It would be gone.
Brianne: Yeah, there’s so many components. Well, just that list is great, and it’s true because I’ve Googled IC before and a lot of it is just like, “Well stop drinking coffee.” And you’re like, “okay.” And I asked on Twitter recently about that, just saying, “Does anybody with IC… has anybody with IC had success with the dietary recommendations?” Which is mostly just a low acid diet.
Libby: Right.
Brianne: And not that this is a huge study or anything, but nobody answered yes. Anybody that answered said no, and like, okay, well…
Libby: It only works for the 10% of the… rarely does it work for anybody. And when it,,, I shouldn’t say anybody. It usually works for the patients who have type one or type two.
Brianne: Well, it makes sense if it’s ulcers.
Libby: Type two is bladder wall phenotype. So if you have type one or type two, then yeah, you’re going to have the diet sensitivity and diet restrictions. If you have type three phenotype, which is my phenotype… that’s the pelvic floor generally is the problem with that. The type three phenotype is called pelvic floor myofacial pain phenotype. If you have that phenotype, diet sensitivities and diet restrictions does absolutely nothing for that phenotype. If you have the type four phenotype, the pudendal neuralgia, diet’s not gonna do anything for that! You have a pudendal nerve problem. What’s diet going to do for your pudendal fucking nerve problem? Nothing! Type five is essential sensitization. You know how many people have central sensitization? Most people who have chronic pain have central sensitization, and they have no idea that they have central sensitization. They don’t even know that central sensitization affects all five senses and that it can affect all five senses completely differently or that it can affect one of the senses and not the other four.
Brianne: Yeah. Yeah.
Libby: And they have no idea. Literally my neurologist, when he was doing the EMG test, and it got to the point where he was doing the needle portion of the test, which I knew was coming, but I had no idea how painful it was going to be, I started yelling and screaming. I was yelling and screaming during the needle portion. And at one point he tried… he’s a neurologist. He treats me for hypersomnia. He turns to me and says to me, “Libby, you need to keep it down.” Keep it down? Why? What?
Brianne: “You’re like stabbing me!”
Libby: “You’re scaring the other patients here.” And I said, “I don’t give a shit. You didn’t tell me that this was going to be this fucking painful.” And he goes, “It shouldn’t be that painful to you.” And I said, “I have central sensitization.”
Brianne: Like, “It is!”
Libby: “My nervous system is fucked, Dr. Faisal! And you know this.” And then he says to me… a neurologist who knows that I have a central nervous system disorder says to me, “Can you control it please?”
Brianne: You’re like, “If I could, I would not be here. If I could just turn it off that I wouldn’t have a problem.”
Libby: Literally what I said to him, I go, “What did you just say to me? If I could control my central nervous system, I wouldn’t be here.”
Brianne: Yeah. Like, “I haven’t been able to meditate this away yet.” What?
Libby: And of course I can’t control it. If you look at my MRIs, I have… my nerve root is compressed, you idiot. I might have to have spinal surgery.
Brianne: That does bring us to my next question… although I am still very mad with you right now… which is, because this is so new, based on this information, do you know what’s next? Or what are the things that you might try or what will make sense? Or is it too new to know?
Libby: One thing that I’m willing to try is acupuncture.
Brianne: Yeah.
Libby: That’s the first thing I’m willing to try… is acupuncture. Cupping, acupuncture. What else am I willing to try? Those are the first two things that I thought of that I’m willing to try. I’ve already done a cupping session earlier this week, on Monday. It helped a lot. It helped a lot. It helped for about three days. Three or four days, the cupping session helped for. It was a cupping massage. It was painful, but it kind of was like a good pain. He did my neck and all the way down to my back, to my lower back.
Brianne: And so when you say it helped, what improved?
Libby: Pain.
Brianne: Just like across the board?
Libby: Across the board, the pain. It helps so much. I was able to stand for longer periods of time. I was able to sit for longer periods of time. As it is right now, I can’t sit for a long period of time. I can’t stand for long period of time. As we’ve been talking, I’ve changed positions probably 10 times.
Brianne: Yeah. Yeah, and I know these interviews are long for people.
Libby: You see me moving around a lot, probably. Because I have to keep moving positions. I have to keep switching. I can’t stay in one position for a long period of time.
Brianne: Yeah, totally. Okay, so that made a difference. And then you’re going to look into acupuncture, which also totally helps some people.
Libby: The difference! This makes a really big difference which has been… well for me to… when I made the decision to start using opiates for pain, it was after months. I mean, my symptoms started in September, and I started having pain probably in October. I didn’t start using the opiates until… it took me like two and a half months, I want to say almost three months until I finally was like, “I can’t do this. I can’t live like this. I can’t live like this anymore.” And I’ve just been really, really careful with it and I’ve been really… I only take… I only use anything when I have pain… significant pain. And when I started using the medical marijuana, it was really hard for me to make that decision cause that… for some reason… my brain… I thought, “That’s totally drugs. That’s totally… if I’m using that, I’m on drugs and I will have relapsed and I’m not sober anymore.” And I talked to a few people to really… that are sober, that also used medical marijuana that were like, “What’s the difference between using medical marijuana for pain than using opiates? What’s the difference?” Well, I started thinking about it and I started doing a lot of research on cannabis and CBD and was amazed at what I was reading and what I was learning about cannabis for pain.
Brianne: Right.
Libby: And when I started reading about that alone, I created a totally separate Instagram account just for medical marijuana, because I was like, this is completely… people just don’t… people are just ignorant. They just don’t know what they don’t know.
Brianne: Yeah. And it’s… I mean, cause other people… some people who I’ve talked to who talk about also using opiates, opioids… anyway, painkillers who are worried, who are going, “Well, I’m… like my own history or my own mental health. I’m concerned… like you say about the line between maybe dependence… which is like painkillers make such a big difference for me that I am dependent on them to live a normal life, which isn’t bad. It’s just true. And I’m concerned about the line between dependence and addiction.” And I’m sure all of the noise right now about the opioid crisis, must make it so much harder to navigate that. But that’s… by itself, that’s so real. The guilt of like, “Oh, I need medication and if I have a background of abusing substances, then I’m very…” like that personal feeling that you’re talking about between opioids and marijuana.
Libby: There’s a big difference between being dependent on a medication and being addicted to a medication. Diabetes patients… this is the best example I’ve ever heard. Diabetes patients are dependent on insulin. That doesn’t mean that they are… to stay alive.
Brianne: Right.
Libby: You need that to stay alive.
Brianne: Literally.
Libby: Literally. This doesn’t mean they’re addicted to insulin.
Brianne: Right.
Libby: It means they’re dependent on insulin. I am dependent on my psych meds. I’m not addicted to my psych meds. I’m dependent on my medical marijuana. I’m not addicted to my medical marijuana.
Brianne: Yeah. Yeah. And you can tell the difference. The difference exists.
Libby: Right. I was addicted to Xanax. I was also dependent on it. It’s… there’s a dependence. It turned into an addiction because of several different factors. A.) Have a little bit of an addictive personality. B.) I became addicted to them because I started using them in an addictive way, which… I guess that doesn’t really make much sense. I became addicted to Xanax, essentially because I started using them to change the way that I was feeling.
Brianne: Right? And that’s… it’s the difference between, say, unaddressed emotional pain or trauma or distress and maybe physical… although that line is also so difficult to parse out.
Libby: Yeah, it can definitely be, I mean, there’s so much that like goes into addiction and there’s so much that goes in… and there’s not a lot that goes into being dependent on something, but I’m dependent on food, you depend on water, you’re dependent on care. Doesn’t mean we’re addicted to it, and there’s definitely people that are addicted to food.
Brianne: Yeah.
Libby: They’re like, “I’ve eaten my meal for the morning,” and then they continue to eat when their body doesn’t need any more food. That’s being addicted to food.
Brianne: Well, it’s like using anything as a numbing agent as a way… gosh, this is so hard, too… as a way to escape, kind of, but when you have chronic pain, sometimes…
Libby: It can get difficult because a lot of people I think, that are in chronic pain… This is where the social aspect, I think comes in personally. In my opinion, I think this is where the social aspect comes in and where the social aspect becomes really important because… and this is why I think every… in my personal opinion, I think every single person who has chronic pain has to have… really needs, this is very important… needs to have a therapist, an individual therapist, and it’s very important that they have a support system. Whether it consists of friends, family, online, in-person would be much better, it’s much healthier to be able to… online is important. I think that’s great. It’s really important to have that social factor of… even if it’s just one human being that you can turn to, that you can talk to, that you can go out with, and you can do things that are unrelated to chronic illness.
Brianne: Yeah. And like able to accommodate it at the same time. Yeah.
Libby: I know Thursday night after I got my test results, instead of going to an AA meeting, which is what I normally do, I went out Thursday night with one of my best friends to a concert, which was difficult for me to do. It hurt. I was in a lot of pain, but we had a really nice time. And I need to do things like that because it fills your spirit, you know, it fills your spirit, it fills your soul, and it gives you something… it gives you back pieces of your life that this illness has taken away from you, and that’s really important to have so that you continue to feel like a full and whole human being, and so you don’t start to feel like “I’m just a sick person.”
Brianne: Yes, I’m nodding so enthusiastically.
Libby: I think a lot of people get really lost in just being sick, and then they never can say… they never have an idea or a hope of what it might be like to feel healthy again. And so then they stop even chasing or looking or investigating into how to get healthy. Stop even looking for avenues of how to get healthy and they just stay in the sickness.
Brianne: Yeah, and it’s such a hard line. I think about this all the time. I still feel like I don’t have good words for it, but it’s such a hard line of like… You can become so focused on trying to like “get better” in quotes, which maybe isn’t possible. It might not be possible to become the exact same level of health as you were before, and so chasing that, if you’re so focused on that, that you lose track of the rest of your life, then I think that that can be really damaging. And then at the same time, I think that acceptance is really important of where your body’s at. But acceptance can also very quickly turn into giving up, which is kind of what you’re describing of giving up on the world around you and making an impact or whatever it is that drives you.
Libby: I think there just needs to be a balance. Like when I… I can just use myself as an example. When I found out that I was… when I got diagnosed with interstitial cystitis, that day, October 31st of 2018 I really felt like, “There’s no way that I have this. There’s just no way. I am not going to accept that I have this diagnosis until I have exhausted every single avenue to disprove that this is what I have. “In the meantime though I’ll kind of accept that I have this, and I’ll adjust my life to the symptoms that I’m experiencing, but I’m not going to accept the diagnosis itself because I don’t believe that that’s what I have, in my guts. Inside of my… inside me, it’s not what I feel like I have. “So I won’t sit here and just lay down and be like, ‘Oh, this is what I have and this is just my life. And so…'”
Brianne: “It’s over now.”
Libby: “It’s over now, and let me just be another person who sits here and says, ‘Well, I don’t know. I’m going to go along with the IC diet, and my symptoms aren’t changing and I’m just going to continue to complain about just that for the next 10 years.'”
Brianne: Right.
Libby: It’s what a lot of people do, and I don’t understand it,
Brianne: Yeah. It does not work for you.
Libby: No, it just doesn’t work for me, so I just didn’t do that. I was like, “Nope, sorry. I’m on a mission to find my root cause and you guys can watch me do it if you want on my YouTube channel and maybe you’ll learn something about… you know, as I’m learning stuff.”
Brianne: Yeah.
Libby: You can continue to just be where you’re at.
Brianne: It all takes time.
Libby: And that’s totally fine, but I’ve managed to… because I’ve been very, very persistent… cause I’m very stubborn and really determined to figure out that I have… to find out that I have a pelvic floor dysfunction. I have these bulging desks. I have this compressed root nerve.
Brianne: Yeah. Yeah. And the hormone stuff,
Libby: And the hormone stuff.
Brianne: It’s like the perfect storm.
Libby: So far, there’s those things and those are the actual root causes. Actually, those are the diagnoses, not interstitial cystitis. And that’s painful… that’s closer to painful bladder syndrome. And there’s so many people that have gotten misdiagnosed. So many people, I get so many phone calls from women that ask me for help now because I talk so much about the phenotypes and because I created a petition to… for signatures to have the phenotypes added to the guidelines… to the AUA guidelines when they come out with the new guidelines. They’re supposed to come out with them later on this year, and I really, really want to see the IC… Dr. Payne’s, IC/PBS phenotypes added to the AUA guidelines. I don’t see any other way that IC… that interstitial cystitis is going to be changed in the way that it’s diagnosed in this country at all.
Brianne: Yeah. And that’s super important. Okay, so it’s about time to wrap up. Is there anything that we haven’t covered yet that is on your brain or in your notes? And it’s okay if no, cause we’ve talked about a lot.
Libby: No, I don’t really feel… I feel like I told you pretty much everything that I could think of that I wanted to tell you about anyways. That’s what it all comes down to. If I think of something else, I guess I could just message it to you.
Brianne: Yeah that’s absolutely true. If anything else comes up. Well, thank you so much for sharing it with me.
Libby: Thanks for talking to me. I appreciate it a lot.
Brianne: Yeah, it’s super informative, and I think it is so helpful… one of the reasons that I did this is because it’s easy… you can get told something by a doctor once and think that that’s the end of the story, especially if you don’t know anybody else’s health story. And I feel like the more that… for me the more that I hear these stories, or the more that I started looking for chronic illness stuff… it was like, “Oh, this is all so much more complicated. And there’s so many more places that I can improve my quality of life now by understanding, even if I don’t have a complete diagnosis that explains everything, even if I don’t love my doctor at a given moment. That’s not the whole story at all.”
Libby: Not at all. When it comes to interstitial cystitis, there’s so much more that is… that you have to look at. You have to look at your hormones. You have to look at your spine. You have to look at your pelvic floor. You need to look at your nerve system… your central nervous system. You have to look at those things, and if you don’t, you are just going to be missing little pieces of the puzzle. There’s gonna be missing pieces of the puzzle and you’re going to sit there and you’re going to be in a lot of pain until you start to look at all those different pieces.
[guitar riff]
Thank you for listening to episode 37 of No End In Sight!
You can find Libby on instagram and facebook @the.intuitive.advocate, and you can find me on both instagram and twitter @bennessb. You can find this show on instagram @no.end.in.sight.pod. I’m still slow on posts because I’m still behind on transcripts, but that’ll pick up again once those pick up again, which should be soon.
Next week I’ll be talking to a woman who’s been diagnosed with fibro, ME, and chronic migraine, so make sure you subscribe in your podcast app to find out when that story comes out.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.