The Science Behind the Symptoms: PGAD/Urethral pain

[00:00:00]I'm Becca Kennedy.

[00:00:01]>> And I'm Howard Schubiner.

[00:00:03]>> And this is the science behind the symptoms where together we will explore the new science of neuroplasticity through a lens of curiosity.

[00:00:13]>> And we are a podcast of the ATNS, the Association for the Treatment of Neuroplastic Symptoms, coming to you from everywhere. And welcoming Laura Haraka. Hello.

[00:00:26]>> Hi everyone. Thank you so much for having me. I'm so happy to be here with you guys today.

[00:00:31]>> Yeah, great to have you. Welcome. And Laura's going to be talking about her journey with chronic pelvic pain. So, yeah, start start at the beginning and tell us kind of how this all started for you.

[00:00:45]>> Sure, no problem. So, my day actually started like any other day. I was a stay-at-home mom and I was the PTA president for my daughter's elementary school. I was also a soccer mom and a cheer mom and I was extremely involved in my kids' lives. And May 2nd, 2015, I took my kids to school like any other day. I came home and I had to use the bathroom.

[00:01:18]A few moments later, I had to use the bathroom again.

[00:01:24]And in that moment, I knew something was terribly wrong.

[00:01:29]I thought maybe I had a UTI, even though I've never had one in my entire life.

[00:01:37]So, I did what anyone else would do. I grabbed some water, some cranberry juice, had a yogurt, and thought, "Maybe it'll pass."

[00:01:46]But when it didn't, I went to my primary care doctor and I assumed I had a UTI. I was going to be placed on antibiotics and I'd be on my way back into my busy, crazy life.

[00:02:02]So, the test showed there was no infection. I was completely confused. I was told to go see a specialist if the symptoms didn't get better in time. And Laura, what specific symptoms were you having at this point? You know, the symptom was a little confusing to me. At that moment, I wasn't really sure what it was, but I felt this urge where I had to go to the bathroom quite a lot, and it felt like my urethra was slightly inflamed.

[00:02:40]Mhm. Like kind of feeling irritation.

[00:02:43]Yes. There was a lot of irritation and I didn't really know exactly why it wasn't showing up on the test. I actually thought it was a mistake.

[00:02:55]And the pain started getting worse over time.

[00:03:00]And I remember that week I sat in the bathtub just trying to find a little bit of relief and I had my phone because we always have our phones now. And >> in the bathtub.

[00:03:18]>> In the bathtub.

[00:03:19]>> Right. [laughter] Okay.

[00:03:21]>> In the bathtub.

[00:03:24]Yep. No, [laughter] you're absolutely right. I was in the bathtub on my phone and I was crying.

[00:03:30]because I was in such discomfort >> and the the sensation felt familiar. I actually knew what it was, but I was almost too embarrassed to even type it in a Google search.

[00:03:47]However, I did. I went to Dr. Google like so many of us do go to Dr. Google for a diagnosis and it came up that there was a real diagnosis for my pain. It was called P G A D. That sensation I was feeling, I felt aroused.

[00:04:10]>> Mhm.

[00:04:12]At that point, who do you tell? Yeah.

[00:04:16]And so what does PG A stand for?

[00:04:19]persistent genital arousal disorder. I was feeling that feeling that people feel when they are sexually harassed, >> but there was nothing precipitating me to feel this way.

[00:04:37]>> Mhm.

[00:04:38]>> And it sounds like it was uncomfortable.

[00:04:41]>> Well, it was completely uncomfortable.

[00:04:44]It was happening 24 hours straight and there didn't seem anything I could do to alleviate this sensation.

[00:04:55]>> It is so got to be so distressing and you know I've been a doctor for 40 years. I and I'd never heard of this syndrome until just a few years ago doing this work. It never even existed.

[00:05:08]was never talked about and it's it's you know it's it's actually not that unusual now.

[00:05:16]Um >> and that's my whole purpose to talk about it. So women and men because there are men with this as well. They don't have to feel so alone because there's a lot of shame >> that comes along with this because you feel strange. You feel weird.

[00:05:36]>> Yeah. And thank you so much for sharing your story about all of this. It is so important and our bodies do these things just beyond our control and that we don't understand necessarily.

[00:05:50]>> Right.

[00:05:50]>> Well, I assumed there was something physically wrong with me even though I was not injured and I didn't have any surgeries that could have precipitated this condition happening. So, I basically went on a 4year quest to find pain relief to figure out what was happening. And in that time, I went to over 25 doctors across the entire United States.

[00:06:25]And I was given 10 different diagnosis.

[00:06:30]And I was given the diagnosis of overactive bladder, urethritis, PGA, pelvic floor dysfunction, interstitial cyitis, pelvic congestion syndrome.

[00:06:47]I had a hernia. I have two tarlov cysts that I was diagnosed with that are still inside. I never had those removed. and endometriosis and a possibility of chronic UTI that weren't showing up on normal testing.

[00:07:05]>> And this was all with the same symptom that you had at the beginning.

[00:07:10]>> It was basically the same symptom.

[00:07:12]However, when I went to a doctor about the PGA, they told me that my bladder was responsible for causing the symptoms.

[00:07:27]So, they told me that I had IC, interstatial cyitis.

[00:07:33]So, it didn't seem right to me because I wasn't having bladder pain at the time.

[00:07:39]Mhm.

[00:07:40]>> And then I was put on a complete restrictive diet.

[00:07:45]>> Anything I loved was basically taken away and stripped from me.

[00:07:50]>> Oh.

[00:07:51]>> And yeah, it was awful.

[00:07:52]>> And what and and why do you think they thought that it was coming from your bladder? And then why did they tell you to do a restrictive diet for it? Well, I was told that they have seen this type of sensation before >> and it's due to the bladder being inflamed >> and that was really the answer I got.

[00:08:13]And you know, we were told from young children, we believe what the doctors tell us.

[00:08:19]>> But the sensation you were having wasn't actually in the bladder as far as you could tell. If I'm if if I'm hearing you correctly, it was more in the urethra.

[00:08:30]you know, more externally.

[00:08:33]>> Absolutely. It was not in the bladder at all. That's why it was so confusing, but I was having urinary frequency.

[00:08:42]>> So, I was having to go to the bathroom probably every 30 minutes. And that would give me >> seconds of relief.

[00:08:52]>> And other than that, it was like 247 kind of. It was just really a very well they call it pad is persistent. I mean that is horribly persistent.

[00:09:03]>> Oh my gosh, that is terrible.

[00:09:06]>> Yeah, it really was. And I've had a history, just so you know, of of now I know other TMS symptoms. I've had sciatica, I've had tendinitis, um I've had gastritis, I've had migraines. And I think the reason this one, not that those other symptoms are easy in any way, shape, or form. I'm not minimizing it, but the difference for me was it was easier to tell someone, I have a migraine.

[00:09:37]>> Oh, yeah.

[00:09:37]>> I have a stomach ache.

[00:09:39]>> Yeah.

[00:09:40]>> As opposed to, >> I feel arousal.

[00:09:43]>> Yeah. Right. Oh my gosh, that's a hard one.

[00:09:47]>> Yeah. Yeah. And for anyone watching this who doesn't know, TMS is another way of referring to neuroplastic symptoms or mind body symptoms.

[00:09:56]>> Yeah, absolutely. There's symptoms that are socially acceptable to talk about and those that are not.

[00:10:04]>> And it's shocking that you saw so many doctors and got so many different diagnosis for one thing. And one of the things we learn in medicine is that when somebody has a presentation of an of a problem, 90% of the time it's pretty clear what it is. It's very rare that you you can't it's so hard so hard to figure out. Most of the time it's very clear what it is.

[00:10:29]And almost every doctor would agree this is it. You know, this is appendicitis, this is a kidney stone, etc. But when you get the situation where you have one symptom and different people are telling you completely different things, you know that nobody knows what's going on.

[00:10:47]>> Yeah. Yeah. And the interesting thing was I saw this doctor. He told me it was my bladder and within a week I had severe bladder pain. If I drank coffee I was literally holding my bladder. and this was something I could drink or something I could eat days before that appointment didn't bother me now bothered me. And then the other interesting thing is cuz I kept going on and on to try to find you know a cure for this. I went to see another doctor and I was diagnosed with PN >> pudendia.

[00:11:27]Yeah.

[00:11:28]>> Yep. And wouldn't you know it that after a few weeks I started having pudendal pain.

[00:11:36]>> Wow.

[00:11:36]>> So I mean it just was happening by the suggestability of it.

[00:11:43]>> And that's the power of our brain and our brain is a prediction machine and symptoms are made in our brain through prediction. Amazing. And it makes it feel like somehow it's your fault.

[00:11:55]>> Like, you know, why did you do that? Or, you know, it just makes it seem so valitional.

[00:12:01]>> Yeah.

[00:12:02]>> On purpose or that somehow there's something wrong with you. The whole thing about having arousal, there must be something wrong with you. It must be some sexual thing, you know. And I think what Becca just said is just so important that our brain creates what we experience. And you know, it so easily picks up on symptoms that then can become repetitive and ongoing and conditioned.

[00:12:32]I can't tell you how many people I've seen who were given a diet for no reason, an interstitial cyitis diet, and then within days or weeks, they were reacting to all or many of the foods on the that they were supposed to eliminate, and they'd never had a problem before.

[00:12:48]>> It's amazing. Yeah.

[00:12:50]>> Yeah.

[00:12:50]>> And I want to just pop in there quickly.

[00:12:52]I after I learned about this approach, you know, shortly after, I looked down one day and I saw that I had a bunion that I'd never noticed before. It was kind of pointy. It was small. And I thought and I just like the the thought popped into my head, no, I hope this doesn't hurt.

[00:13:10]Even though I'd never noticed it, no problems at all. And then sure enough, that day the bunan started hurting. I mean, I would push on it and it really hurt and I thought, "Oh my gosh, I can't that I can't believe that I just put that prediction in my brain." And I mean, I was experiencing pain as I pushed on it and then it went away after a few days or so after I >> and these are great. That's what it was.

[00:13:38]And these are incredible examples of how when we hear about something or we think about something, how that can program the brain into pain or other symptoms.

[00:13:48]But it also happens on a totally subconscious level where people read an article or they hear a news report or they meet somebody who has something or has a symptom or whatever or it's just in the air almost. It's this weird kind of um you know young called it the collective consciousness where and this happened tremendously in during co right and and and vaccines. So there's so many times where people said well I didn't worry about it at all consciously I wasn't worried about the vaccine but nevertheless they had this >> amazing and and you know horrific response.

[00:14:26]>> Yeah. The example I like to use too is um when my kids would come home from school or you'd get that letter in their backpack that there's a lice epidemic.

[00:14:37]I can't tell you how many times my head was itchy.

[00:14:41]>> Yeah.

[00:14:42]>> Exactly.

[00:14:43]>> Yeah. Exactly. And our brain is it's 90% of our brain at least is unconscious and it's paying attention to the world and it's constantly updating its predictions. every second it's updating its predictions and it's rolling in what's fed to it essentially and this all of these examples are perfect examples of that >> and as I think Becca just said the biggest predictor of what the brain does this moment was what it did last moment you know what it did before and so once something begins to occur >> once the pain starts the arousal sensation once the frequency starts once the bladder pain starts that becomes its own prediction and becomes a self-fulfilling prophecy becomes a loop neuroscircuit loop in the brain that can just keep going and going. It is so maddening and frustrating to go through.

[00:15:39]>> Absolutely. Absolutely.

[00:15:41]>> Yeah.

[00:15:41]>> Yeah. And you know the interesting thing is when they did the testing for my bladder through cystoscopies or eurodnamic studies they couldn't find anything wrong. My bladder looked completely fine. And I know we talk about that a lot in this world that we're getting symptoms without anything you know showing up in the tests. Mhm.

[00:16:07]>> But for me, I did have things show up in the tests as well. And that's what made my story more complicated. I think they found two tarovsis.

[00:16:21]>> Mhm.

[00:16:22]And they found pelvic congestion syndrome. Mhm. They found endometriosis and a hernia.

[00:16:30]>> Wow.

[00:16:31]>> Yeah. So now which which road do I chase? Right.

[00:16:35]>> Yeah. Right. And how did And how did that make you feel having, you know, hearing all these things?

[00:16:41]>> Well, to be honest with you, I thought I kept finding the reason for my pain.

[00:16:47]>> And that's a relief.

[00:16:48]>> Yeah.

[00:16:49]>> Right. When we find these things that are abnormal in our body, it's a relief.

[00:16:52]Finally, maybe there's an answer that you can get rid of the symptoms if you treat that.

[00:16:57]>> But it also put me on a wild goose chase.

[00:17:01]>> Right. Right. because often abnormalities are not necessarily causing symptoms or not causing those symptoms and um but they can be attributed to that. Um but it's not necessarily the case is and it sounds like that's what was found for you.

[00:17:18]Well, I didn't believe the endometriosis was the case. I saw a hernia specialist and he didn't think that was it. And I even traveled to Texas to a Tarlov uh cyst specialist and thank [clears throat] God he did not think the cysts were the cause of my pain.

[00:17:36]>> However, I did see an interventional radiologist and he thought the pelvic congestion syndrome could be the cause of my pain.

[00:17:48]And it made sense. And I was told that these were the biggest and largest varicose veins in my pelvis that he has ever seen in his whole entire career.

[00:18:03]>> Wow.

[00:18:04]>> Wow.

[00:18:05]>> So that's how the pelvic congestion syndrome was diagnosed of seeing these veins that were enlarged in your pelvis.

[00:18:13]>> Exactly. He saw them through imaging and he told me that it would be a simple procedure in order to repair this. So I thought all right what do I have to lose at this point? I was like on year three or four of going through this journey of trying to find you know help and going getting help meant getting lots of different procedures and tests done. I had ilolingual injections. I had trigger point injections and I had, you know, multiple Botox injections.

[00:18:52]So, I had a lot of, you know, procedures done in the meantime. So, I said, "All right, let me try this."

[00:18:58]>> And did and did any of those procedures help even like temporarily?

[00:19:03]>> No.

[00:19:04]>> Did any of them make it worse?

[00:19:06]>> No, it didn't make it worse. Um, but I've also had, you know, nerve blocks and they were shocked that the nerve block wouldn't stop the symptoms. Now, I am going to say this because I think it's important.

[00:19:20]>> When I had some of these procedures done, >> I would be rushing to get to the doctor.

[00:19:29]>> I'd be rushing to get to my car. Some of them were done in New York City. So, you know, the parking in New York City is a lot of money right there.

[00:19:39]and I'd be rushing home to get to my job because at the time I was a dog walker.

[00:19:44]That was my business then who let the [clears throat] dogs out.

[00:19:47]>> And I So the point of that is there was a lot of dysregulation in me even going to the appointments, >> the rushing, there was no slowing down.

[00:20:01]>> So I said, why not get the surgery? Let me get the surgery for the pelvic congestion syndrome. And they did an embleization of my ovarian veins, which I was actually awake for.

[00:20:13]>> Um, and the reason I [clears throat] was awake for it is because every time I saw a doctor over the past four years, all they did was put me on another medication such as clonopin, Xanax, anti-depressants, oxycodone, morphine.

[00:20:35]Wow. So, I was addicted to drugs basically.

[00:20:39]>> I was on high doses of benzo.

[00:20:42]>> So, when they gave me the anesthesia, >> it wasn't enough.

[00:20:47]>> Oh, wow.

[00:20:48]>> Jeez.

[00:20:49]>> Wow.

[00:20:50]>> And it's just amazing. Like I think you said something at the beginning. You said, Laura, we tend to believe what our doctors tell us.

[00:20:59]And you were right there. I mean it's and it's it's sad that we have to question but in the world that you were you were caught up in where there was 10 different diagnosis it's like I said it tells you that we don't know what it means. I mean when you look up the definition of interstitial cyitis on you know the standard medical textbooks basically what it says is we don't know what this is.

[00:21:30]It's a debilitating condition that impacts quality of life. It is not well understood.

[00:21:36]>> The symptoms do not represent one specific thing. We can't find what's wrong. [snorts] >> And and the same thing is true for predental neuralgia and persistent genital arousal.

[00:21:49]>> Yeah.

[00:21:50]>> You know, disorder. I mean, the same thing is there. And, >> you know, everyone's looking at it from their point of view. It's it's really sad and the fact that you were like the model patient doing everything that you were supposed to do but getting worse, you know, getting more diagnosis, getting more symptoms, more medications. I mean, pelvic, you know, congestion syndrome means that your symptoms change when you stand up or sit down. You had them all the time.

[00:22:21]>> Yes. I mean just that from a kind of common sense point of view uh and the you know the whole thing is like how many how many people have varicose veins in their pelvis who don't have any pain >> exactly >> lots >> and you had pointed to your neck with the embleization had they gone through the vein in your neck >> yes they went through my neck and they embleized the ovarian veins with coils on both sides. And I was told that I was going to have relief almost immediately and I didn't.

[00:23:01]When I went back to the doctor, and I might mess this up a little medically, he said that through imaging, there was another vein, a transverse vein going across that was still um giving blood supply to these veins in my pelvis. And that if I went back in and got that taken care of, I had a chance of being paralyzed.

[00:23:28]>> Oh my gosh.

[00:23:31]>> And here's the thing, I entertained you.

[00:23:33]>> Yeah.

[00:23:34]>> I mean, I can imagine you've had four years of 247 discomfort. You've tried all of these other things. I mean, this was your last ditch effort. I mean, it's understandable that you would entertain it if there is a chance that you might get better.

[00:23:52]>> Oh my gosh.

[00:23:53]>> Yeah. I thought I can just live my life in a wheelchair and at least have no pain possibly.

[00:23:59]>> Oh my gosh.

[00:24:00]>> In a wheelchair. And if and if the doctor in Texas had said the tarlov cysts need operating on which many people would have done even though we know tarlov cysts are seen commonly in people with no symptoms at all. You might have had that. We know that endometriosis occurs in 30 40% of women and has no symptoms at all. And again for many women together, right? I mean, I'm not saying that endometriosis is never a cause of symptoms. I'm not saying that. But it's commonly not a cause of symptoms, but yet [snorts] uh but they're often a specific type of symptoms that you didn't have. They don't cause urethral symptoms, first of all.

[00:24:44]>> Uh you could have had surgery for endometriosis as well, right?

[00:24:50]And then injections for pudendal neuralgia. You had you had some of those?

[00:24:55]>> Absolutely. Absolutely. I had multiple injections to be honest with you.

[00:25:00]Sometimes I would go to the doctor and I would get 13 trigger point injections in my pelvic area internally and externally.

[00:25:13]>> Oh my gosh.

[00:25:15]Wow. I mean, just that in and of itself sounds traumatic.

[00:25:20]>> Yeah.

[00:25:21]>> It was traumatizing. And even after I healed from chronic pain, it took me a year in therapy to help myself [clears throat] release the trauma >> from the procedures that I had.

[00:25:34]>> Oh my gosh. Yes.

[00:25:36]>> Yeah.

[00:25:36]>> I mean, it's hard to make me speechless, but when you said that, >> I couldn't say anything. I mean, it's >> Yeah. Yeah. I actually could cry at some like I get a little emotional even thinking uh back to those times where I would drive you know an hour and a half get the injections and sit on ice packs on the way home. It was it was devastating.

[00:26:00]>> Yeah. I mean I think I can speak for Howard on this that we're both emotional right now just listening to this. I mean that is devastating to go through that.

[00:26:11]It was >> sorry that you went through all that.

[00:26:14]That's >> that's really >> Thank you. Thank you. I appreciate that.

[00:26:19]>> I, you know, I I just love our profession. I love being a doctor, but yet I feel like I'm apologizing for our profession over and over and over again, for not seeing, for not thinking clearly and seeing. And but you know, I guess we have to think that they, you know, they think that they're trying to help. I'm sure some of the people they treat with these things do do get better. From our point of view, if they're treating pudendo neuralgia or renist cyitis or pad with these measures, when people do improve, it's from a placebo effect.

[00:27:00]>> Absolutely. Absolutely. I have people that call me just for a consult, a 20 minute free consult, and they'll text me a day or two later and say, "My symptoms went away because you gave me hope."

[00:27:16]>> Yeah.

[00:27:17]>> Yeah.

[00:27:18]>> Amazing. Totally. and updating updating that prediction providing safety for the brain and then also an understanding you know creating a model that makes sense of why the symptoms are there can be really powerful.

[00:27:33]>> Absolutely. Absolutely. As soon as I understood what was happening oh that was when real relief happened.

[00:27:44]>> How how did you how did you come to that then?

[00:27:47]So, it's very interesting. Um, July 17th, 2017.

[00:27:54]So, two years later, I met a therapist.

[00:27:59]Her name was Caitlyn. And I didn't really know it then, but that was going to be the turning point in my recovery.

[00:28:09]And Caitlyn's office was down a long hallway.

[00:28:15]And one day I was sitting there waiting for her to come in and I hear the door to the building open and hear her coming up the stairs and she peaks down the hallway, sees me sitting there and jumps back.

[00:28:29]So I'm thinking, what is she doing? And all of a sudden dance music starts blaring and she starts dancing and boogieing down the hallway. Yes. Not your typical therapist, correct?

[00:28:47]>> Is this New York City?

[00:28:49]>> No. Well, New Jersey. New Jersey.

[00:28:51]>> Okay. [laughter] >> New Jersey. So, I sat there and my head's down. I'm in sweatpants. I couldn't wear jeans at the time with all the pelvic pain I was in. And I was like thinking, what does she want me to do?

[00:29:06]Does she want me to look up? Does she want me to get up and dance with her?

[00:29:09]Because that wasn't going to happen. I was I was in so much pain.

[00:29:15]So, she did this for months, months, and I found out that her birthday was coming up in 3 months.

[00:29:27]So, I decided to enlist the help of my two children who I really didn't have a great relationship with at the time because I wasn't um I was I was honestly, for lack of a better word, grossed out with myself.

[00:29:43]I felt disgusting inside.

[00:29:45]>> Oh.

[00:29:45]>> So, how do you have your kids sit on your lap when you're feeling arousal?

[00:29:49]>> Right.

[00:29:50]>> Yeah.

[00:29:51]God.

[00:29:52]>> Yeah. I enlisted their help and I said, "Guys, can you help me?" And I said, "We have three months to learn the steps to a dance so I can do a dance for Caitlyn." Because it was really the only thing keeping me going, you know, week after week knowing that this lady was going to dance for me down a hallway.

[00:30:10]So, and thank God we had three months because I'm not as good a dancer as Dr. Schubner. We've seen him dance on stage at the conference. [laughter] So, I needed every day in that three months. So, the interesting thing was that my symptoms as I was learning the steps to the dance, Good Morning by Mandisa, by the way, is the name of it.

[00:30:34]I my pain started going down.

[00:30:37]>> Wow. So, I was having fun.

[00:30:41]I was connecting with my kids. And I was learning something new. Oh my gosh.

[00:30:48]Amazing. Howard, is this the best thing that you've heard all week is that dancing helped someone symptoms?

[00:30:58]Well, you know, I have a proclivity for dance and there's a British Medical Journal article which showed that the best best treatment for depression considering all the treatments, relaxation, medication, counseling, meditation, all the treatments, dance came out on top having the most powerful treatment for depression um and play and connection because dance is all of that uh I mean I was talking to a guy today and I was telling him we were talking about this and I was saying you know I've seen people get better when they started working on motorcycle you know something >> that would make my pain that would make my pain worse personally but I get it [laughter] >> well you got to be motorcycles are pretty uh you know engaging >> I mean it was the most amazing thing and it you think about it arousal is something that's supposed to in life be pleasurable.

[00:32:01]>> So, isn't it ironic that my body produced this and that the remedy part of the remedy was bringing more joy and pleasure into my life.

[00:32:15]>> Yeah. Amazing. Really amazing.

[00:32:19]>> But that was just the be that gave you an inkling I think right an opening. It like opened a a window into something else going on that may be completely at odds with everything you had been told me for. Is that is that what happened?

[00:32:35]>> Absolutely. Absolutely. I didn't really know exactly what to do with this information. It was like that moment a light bulbs goes off, but okay, what do I do now? And that's where you came in.

[00:32:48]So, I scoured the internet and I don't remember what the Google search um what I typed in exactly, but it must have been pain relief or get rid of your pain and your book came up. So, of course, I bought it right away and I started reading the book as immediately and it was like I was reading an autobiography about myself and I was like, "Oh my god, this man didn't even meet me yet."

[00:33:21][laughter] So, it all made sense. It just it just started to click. And at that point, there was no one that was going to tell me that this was physical.

[00:33:36]>> It was like I put blinders up that, you know, you have friends when you when you tell someone, "Oh, I'm having pain or this." They always say, "Oh, I have this doctor or I have this remedy or try this." I wouldn't even hear them anymore. Mhm. And because of your book, I found a therapist in the back of the book and I started seeing her. Her name was Wendy. She was a somatic experiencing practitioner.

[00:34:05]And I started leaning into parts of my body that felt good.

[00:34:12]And I would sit right in this room that I'm in right now. And I would just spend honestly hours just paying attention to my feet >> because my feet felt so good.

[00:34:27]>> Wow.

[00:34:27]>> And you didn't have any bunions. So that was good.

[00:34:29]>> No, I didn't have any bunions. So that was a good thing. [laughter] >> And you know through somatics and through somatic experiencing that's when I learned that emotions show up in the body.

[00:34:47]And [clears throat] when I was tuning into my body, my pain started to go down.

[00:34:55]>> Amazing.

[00:34:57]And are you able to say specifically what were the things in Howard's book that spoke to you that you felt like he was describing about you that really made sense to put the pieces together?

[00:35:09]>> Yeah, you know, it was the stories that he shared in there. Mhm.

[00:35:14]>> It was the, you know, hearing other people um have these same type of things was very helpful. And you know, his fit criteria understanding that, oh, my symptoms are not representative representing a physical condition because they were changing, they were moving, they happened at a stressful time in my life.

[00:35:43]a completely stressful time in my life.

[00:35:46]So that was really helpful and understanding that there were personality traits that I had that were what people with mindbody conditions usually possess.

[00:36:02]Now, I will tell you some of those personality traits were helpful to me as well because they were the push that was like, "You're going to do this. You got this. No one's going to tell you any differently that this is a mindbody condition." But because he spelled all of those things out, I was able to identify that this is a mindbody condition. And there was a sense of like reading it. I just felt so much more relief >> that I was understood.

[00:36:41]>> Someone could see me. Mhm. And so were you able to put the pieces together of why your symptoms were there?

[00:36:51]>> Yeah.

[00:36:52]>> So I was able to do that immediately because of the book too and because of the work I did with my therapist as well. I I have a wonderful family. I love my parents dearly.

[00:37:06]But my father yelled a lot with me growing up. And I felt like I didn't have a voice and I always felt like I had to be perfect in order not to get yelled at.

[00:37:22]>> And then on the other hand, I had a mom and they're both, like I said, loving people, but my mom was always fearful of everything in life. So I grew up not thinking what if the best can happen, always what if the worst happens. So I would always leave the house being fearful.

[00:37:50]>> So I had both components going on. So it's understandable since the brain picks what's familiar that I picked a relationship, a partner with someone that represented those exact same qualities. M >> both both of those.

[00:38:08]>> Yes.

[00:38:09]>> My goodness.

[00:38:10]>> So, I'll be honest. The marriage wasn't good at all. Um I always felt a lot of pressure to do things and I ran around kind of like a nut trying to get things done and check off boxes. Mhm.

[00:38:31]>> And during that marriage, and I'll be honest with you, I'm 54 years old, and I know a lot of women now work, but at the time there wasn't the option. It was like, oh, I'm going to stay home and raise the kids. So, I felt like that was my job and I didn't deserve rest or >> selfare.

[00:38:55]And it was really like a 1950s marriage.

[00:39:00]If you kind of think of like Archie Bunker, >> well, you were the soccer mom and the >> and the PTA president. I mean, you've you've stepped up to the roles fully.

[00:39:12]>> Yeah. And probably trying to be perfect with that, taking care of everything and everyone and yeah, running around all the time. Um, just so much pressure that's just building and building and probably feeling trapped in many ways.

[00:39:27]I was trapped. Um, I stayed home. So, I gave up my prof profession, which was a math teacher >> to raise my kids. So, I didn't feel like I actually had a way out >> of this.

[00:39:42]>> And I truly truly believe my body produced pelvic symptoms in order to protect me. That's exactly what it was doing, right? It was taking you out of that situation that otherwise it didn't seem like there was any other way out of.

[00:40:05]>> Yeah.

[00:40:06]>> And if you think about it, if you have pain in your pelvis or symptoms, sensations, whatever we want to call it, it it takes sex off the table, right?

[00:40:17]>> Yeah.

[00:40:18]>> Yeah. So, I was able to The pelvic pain said no when I couldn't.

[00:40:26]>> Wow.

[00:40:27]>> Yeah. Wow.

[00:40:29]>> There's a kind of a deep sadness here, you know, for me anyway. Just kind of hearing this, it just feels like a deep sadness of, you know, for you in that situation.

[00:40:44]>> And if you think about it, because I had pain, now I can rest.

[00:40:49]Yeah.

[00:40:49]>> Now I had an excuse.

[00:40:51]>> Yeah.

[00:40:52]>> Now I could take care of myself.

[00:40:54]>> Yeah. Right. Right.

[00:40:56]>> You were had another function. This pain too.

[00:40:58]>> Yeah. Yeah. Mhm.

[00:41:00]>> Wow. But what a hard way to go. I mean, my god.

[00:41:04]>> A hard way to learn the lesson.

[00:41:06]>> Oh, horrible.

[00:41:08]>> And so common. I mean, that's how our culture, unfortunately, is often set up for a lot of people is those lessons that we have to drive oursel and we can't say no and we have to take care of everyone and can't stand up for oursel and um and and we keep doing that until our body says no.

[00:41:27]>> Exactly. Exactly.

[00:41:29]>> Do we want to talk a little bit about the science for a bit, Becca, >> and then come come back to Laura's uh kind of like Nelly.

[00:41:40]>> Yeah. Right.

[00:41:42]>> Um, yeah. Do you want to talk about the interstitial cyitis?

[00:41:46]>> Yeah. Yeah. I was just saying as I was saying earlier, it's really not understood. But what's fascinating?

[00:41:51]Well, the two things that I think I want to highlight about interstatial cyitis.

[00:41:55]One is the name. It makes zero sense.

[00:41:58]And even in the textbooks, they say the name doesn't make any sense. Cyitis means inflammation of the bladder. You didn't have that. The vast majority of people diagnosed with IC don't have inflammation of the bladder.

[00:42:12]Interstitial means the interstitium of the bladder, the cellular walls of the lining of the bladder. And that implies that there's some something wrong there, some damage there, some inflammation there. And that's not the case either.

[00:42:28]But yet when you look hard and we see this this is a really I think a good example of some of the things that we see in our in our field of neuroplastic symptoms. When you look hard scientifically biomedically you can find a variety of abnormalities or anomalies or things which are there but are not actually causitive. They may be even caused by having pain. Um, and I just want to read some of them and it's almost funny, you know, altered bladder epithelium expression of human lucasite antigen class one and two. Okay, no one's ever heard of that. A decreased expression of europlacin and chondroitin sulfate. Altered cytoerotin profiles, altered integrity of the GAG, the glucose amino glycan layer, defect in TAM horse proteins, uh, increased expression of interlucan 6 and P2X3 adenosine triphosphate receptors, enhanced activation of the NFKB gene.

[00:43:28]Does that mean anything to you, Becca?

[00:43:30][laughter] >> No, not really.

[00:43:34][gasps] I mean these are findings like laboratory findings that you can see and we see this in almost so many of the conditions long co being one of the and chronic fatigue synd being one of the things where you can find a tremendous amount of minor abnormalities in in genes and expressions of genes and cytoines and proteins and in endothelial layers and receptors etc. But they don't really mean anything. they're not actually causing uh the syndrome. So I just thought that would be useful, >> you know, to bring up >> and it can be potentially if our brain is sending a chronic warning signal to a particular part of our body that there may be some changes in the cells like all these cells that Howard just mentioned, but again that it's a downstream effect and that those in and of themselves are not the the co the the beginning of it, the cause of it, but it's our brain making that, you know, potentially what can happen. But the solution to get that to stop is still getting to the root of the problem, >> right? And when you think about pudendal neuralgia, that's another one where it's a it's a term which technically is accurate. It means neuralgia means nerve type pain. And they say pudendal, well, there's a pudendal nerve and there's many branches of it. So because there's many branches of the pedendal nerves, you can have pain in many different places. But the key thing, and I think Laura brought this out where she was talking about what we call the fit criteria, was when you have pudendal neuralgia and you talk to people, you see that the pain typically moves from one part of the paranium to another. It turns on, it turns off. It has different sensations, different intensities, has this amazing variability that wouldn't make sense if the nerves were actually damaged. And the testing shows, I talked to a guy this week who had, you know, all the MRIs of all of all the pelvic regions, all were normal, but even had the, you know, neurogenic MRI where it shows you can actually see the nerves, the super special MRI. And that was completely normal too. But yet the doctors are saying, "Well, you have pudendal neuralgia, you have pudendal pain, and we should do injections." And you know, your experience with that just sounds horrific.

[00:46:05]>> Yeah. Yeah. And same with something like Pad is I mean there's not a lot of research on it for sure to be expected, you know, to be fair. But what there is again they have all these different theories of all these different potential reasons for it but nothing that really they fully understand or is unifying. And again like Howard was saying the more that syndromes or symptoms have lots of different theories but not a unifying one um is more likely that it's neuroplastic.

[00:46:39]And the more we one of the things I don't know if Jeff Becca what your lawyer and Becca what you think about this but it seems to me that the more unusual the more weird the symptoms are the more bizarre no offense I'm not trying to call you weird or bizarre but it is like I say we never heard of this syndrome you we never heard of persistent arousal syndrome >> that's it's odd it's really odd it's very specific sensation And >> people who study sex and sexology know that, >> you know, arousal has to do with, you know, fantasy and friction.

[00:47:19]>> You know, what goes on in the brain in terms of what we're thinking about in terms of, you know, sexually speaking, but also the >> kind of um, you know, the friction, the arousal part that that comes from um, touch and uh, etc. And you know, you didn't have either. None of the none of that was happening, you know, for you.

[00:47:41]Uh, so it makes no sense that this was actually something to do with sex.

[00:47:46]>> It makes and because it's so bizarre.

[00:47:48]>> Well, except for Except for stopping sex, >> right? Exactly. Yeah. Except for metaphorically speaking.

[00:47:56]>> Yes.

[00:47:57]>> Yeah.

[00:47:57]>> Well, what So what what what ended up happening?

[00:48:02]So, I feel like I'm very lucky. I found this world. I was able to heal my chronic pain. I do not have chronic symptoms anymore.

[00:48:17]And I became a somatic experiencing practitioner. So, I went through a three-year training because I want to try to help other people and I want to try and share my story so they don't go through what I went through.

[00:48:35]>> And yeah, so now I help other people heal from chronic symptoms and my dream when I was healing was to create a space and a community for people to heal and come together. So I created the pelvic healing circle where people can come together and I teach because I was a teacher by trade.

[00:48:58]>> I teach three sessions a week on mindbody concepts, somatic skills and breath work because I'm a breath work facilitator as well. So the story actually has a really happy ending. I also will say I'm divorced.

[00:49:16]>> Yeah, I was gonna I was wondering about that. I have to add that I am divorced and I don't think you have to get divorced to be out of pain. I just will add that for me um that was um what was necessary.

[00:49:31]>> Yeah.

[00:49:32]Wow. Amazing to hear how many people that you're are helping with your story and your work and connection. Amazing.

[00:49:41]>> How did you explain this to your kids?

[00:49:44]How old were they when this was going on? and and I was just wondering how cuz it's you know how you talk to them about it because you're obviously very wise and smart and caring.

[00:49:55]>> Okay. Well, here's the funny thing. I actually have never had a conversation about my with my children about the specific diagnosis. I have just told them that mom had pelvic pain and it was due to stress and me not really feeling in to my emotions at the time.

[00:50:22]>> And it's interesting, my daughter right now is experiencing jaw pain.

[00:50:30]>> And she called me up and of course I took her to a doctor to make sure there was nothing going on because I always think that's important. But she said to me, "Mom, I noticed a connection immediately that something happened from at work and my jaw locked up."

[00:50:47]>> So even though I didn't really go into details, they this work and what I've been doing has had a trickle down effect >> on them [clears throat] because I've completely changed my life. I am more present now in their lives. Um, to be honest with you, I had chronic anxiety as well, uh, growing up, and I don't have it anymore.

[00:51:12]>> Awesome. Amazing.

[00:51:14]>> They they can see the change in me. And I do think they're proud of me.

[00:51:19]>> Wow.

[00:51:20]>> As well, they should be. And what's interesting is that what you're doing and what we're all doing, but specifically what you're doing is you're changing the collective consciousness because this work as it spreads, as it goes out, it changes the collective consciousness so that not everything is related to fear, not everything is related, not all symptoms are only injury or biomedical.

[00:51:50]and having just that knowledge that it could be, you know, could this I have a pain in my jaw. I have a pain in my stomach. I have a I'm anxious.

[00:52:00]Something's going on. Gee, let's go to the doctor and make sure I'm okay. But in addition to that, could there be something bothering me? The simplest of questions that your daughter was quickly able to um ask answer.

[00:52:17]>> Yeah. And actually, if I can add, my younger daughter as well, um, a few years back when she was filling out college applications, she yelled to me from the other room. She said, "Mom, my wrist hurts."

[00:52:30]>> And I yelled back and I said, "It's TMS." Because they know the initials.

[00:52:35][laughter] And he said, "Mom, you think everything's TMS." Well, >> six months later, she yells to me from the room again and says, "Mom." And I said, "What's going on?" She goes, "My wrist hurts." And I said, "What are you doing?" She goes, "I'm filling out scholarships for college." She said, "I have TMS." [laughter] At at 18 years old, [clears throat] >> now she knows [gasps] Oh, those are stressful things.

[00:53:13]Absolutely.

[00:53:14]>> Yeah. Yeah. That's what I was talking about with a guy today because we were talking about um how common this is. I mean, this is not this is not we, you know, we think of it, oh, let's Google chronic pain. You know, we've had pain for 5 years or 10 years. Oh, that's neuroplastic neuroplasticity activities. You know, our brain is creating what we experience all the time. And so these kind of things are happening all the time to most peop, not all the time, but most people some of the time >> and it's never recognized, >> right? But if it if it begins to be recognized, that would be a watershed event and it would take a lot of pressure off I think the medical system in a way.

[00:54:00]>> Yeah.

[00:54:01]>> And help a lot of people. It's just being human. It's just how we work. Our brain is constantly trying to protect us and communicate with us. For sure.

[00:54:12]>> Awesome.

[00:54:13]>> Well, amazing. Amazing, Laura. Yeah.

[00:54:16]Thank you for sharing.

[00:54:18]>> Yeah. Thank you for having me here. I really appreciate it because I feel like that's my purpose in life right now to share my story in the hopes that it can help someone. your very human story and your very and your very common story >> actually, right? It's not that uncommon.

[00:54:40]>> It sounds so weird and when someone's going through it, they feel like they're the only one and it's so weird and no doctors can understand because it's so unusual, but we see it all the time.

[00:54:52]>> Yeah, absolutely.

[00:54:55]Well, thanks again. We really appreciate having you and sharing your story and it will help many.

[00:55:01]>> Thank you so much. I appreciate being here.

[00:55:04]>> Thanks everyone for joining us. This is the science behind the symptoms >> podcast of the ATNS. We will see you next time.

[00:55:14]>> Next time.

[00:55:15]>> Bye now.