[00:00:02] Krissy Dilger: Hello, and welcome to the SRNA “Ask the Expert” podcast series. My name is Krissy Dilger, and I moderated this episode titled, “Pelvic Floor Therapy for Bladder and Bowel Management.” SRNA is a non-profit focused on support, education, and research of rare neuroimmune disorders. You can learn more about us on our website at wearesrna.org.

[00:00:28] “Ask the Expert” is sponsored in part by Amgen; Alexion, AstraZeneca Rare Disease; and Genentech. For this episode, I was pleased to be joined by Jessica Ekberg. Jessica Ekberg is a business owner, avid runner, former pants peer, prolapse owner, postpartum pain sufferer, mom of two, and certified pelvic floor therapist.

[00:00:52] Her goal is to bring pelvic floor health discussions to the forefront of what she does to help dispel myths and educate about facts. You can view her full bio in the podcast description. Thank you for joining me today. Excited to learn more about pelvic floor therapy and how it can be used for people with rare neuroimmune disorders.

[00:01:17] Jessica Ekberg: Hi. I’m Jessica. I am a pelvic floor therapist. I am an occupational therapist by trade, and have been so for 25 years now. I’ve been specializing in pelvic floor therapy for five years now. And just I know some people will say most often people hear pelvic floor physical therapy, and, for the most part, PTs and OTs have to have the same training to be certified in pelvic floor therapy. So, in case people have questions with that.

[00:01:53] Krissy Dilger: Great. Well, thank you, and thank you for joining and dedicating some time this afternoon to speak with me. So to begin, can you just explain what conditions or issues pelvic floor therapy can treat?

[00:02:12] Jessica Ekberg: Absolutely. So, pelvic floor therapy, I want to kind of start by saying the pelvic floor is a group of muscles that makes up the bottom of the core. And why that’s so important is because the pelvis itself is sort of like the foundation of the body. Right? And if the pelvis is stable, it allows for everything else to move around it in a pain-free, functional way.

[00:02:41] And so when we talk about the pelvic floor, it is highly impacted by the way we breathe and how our posture is. And so, when either of those things is thrown off, and that can be from anything, from a cold we get. I had so many friends call me when COVID was really active. Oh my gosh. I’m peeing my pants now. What do I do? So, the way we breathe is thrown off by a million different things.

[00:03:16] The way we train if you’re an athlete or you’re doing sports, the way we breathe pre-cold, after a cold or an infection, the way we — our posture is based on just, for a lot of us, it’s like thinking, oh, I got to bring my shoulder blades back, and I’ve got to bring chest up and stand really tall. And I often find these patterns tend to be what kind of throws off the pelvic floor, and really when we say the pelvic floor, those muscles, that makes up the bottom of the core. I see people for a huge range of things. I see people for chronic back pain, chronic hip pain.

[00:04:00] I see people for the more common things people think of pelvic floor is incontinence, and I see both bowel, bladder incontinence. I see people for constipation. I see people for things like IBS, anal fissures, pelvic pain. And this is for men and women. And I think that’s a big misconception too, that men don’t have a pelvic floor, because they do. I see people for bowel, bladder, sexual function in general. When we talk about sexual function, it can be pain with painful intercourse, it can be difficulty with achieving orgasm, it can be erectile dysfunction.

[00:04:35] There’s so many different things that fall into this category. I see people with, I’ve mentioned this a thousand times, but respiratory issues, and I see people — oh, what else? All ages. I see sort of the full gamut of people, and I love doing it because it’s always different. I do love the challenge when I see people with the rare autoimmune disorders, because I think for the people that I’ve seen, their world has sort of been rocked pretty fairly quickly, and then it’s sort of this recovery after. And everything with pelvic floor, for the most part, I don’t ever see somebody that had an acute injury. Right?

[00:05:25] It’s like if you break your leg, you go to therapy. Or if you break your arm or — Usually, with pelvic floor issues, it’s something that’s been building for a long time. And so when I start to treat someone, I’m treating someone from the perspective of peeling back the layers of the onion to kind of get to the root, because we’ve compensated and we’ve created these patterns to compensate for whatever the original sort of issue was. With the autoimmune diseases that I’ve seen people come in for, it’s interesting, because they did get rocked quick. It was an acute issue.

[00:06:00] And this isn’t for everyone, it’s just, in my experience, what I’ve commonly seen is that the pelvic floor issue comes in because people are rebuilding from the ground up, depending on the level of the injury to the spine, spinal column, they’re sort of reintroducing all these things to their body. How to walk, how to talk, how to reach, how to coordinate, all those things.

[00:06:27] And something that we oftentimes don’t think about is how the pelvic floor is functioning. And so, one of the last things to come on board, because if you think about it, if I kind of took away all your movement, one of the major things everybody does is being able to walk. I got to be able to move in life, and then I’ve got to be able to use my hands, and I’ve got to be able to do those things.

[00:06:46] And so, the idea of not leaking or even urinating on your own, having a bowel movement on your own, having sex or an erection or an orgasm, is kind of the last thing. Right? Just that I’m alive and that I’m happy to be here. But then people start to recover or they’re sort of hitting kind of where they’re going to be, and there’s these lingering issues, and most commonly, the bowel, bladder, and sexual function are what I see of the common areas of dysfunction.

[00:07:23] Krissy Dilger: That makes sense for sure. Yeah, I think people coming out of that diagnosis, their world is so shaken up. Once, I guess, the dust settles a little bit, that’s when they can start addressing these issues through pelvic floor therapy.

[00:07:42] Jessica Ekberg: One of the things I think is that’s really interesting, and I’m always learning too, so I think a lot — so, the pelvic floor itself is so highly tied into the — what do I want to say? The stress system, the fight or flight system, it’s so highly tied into that, that if we think about after this whole thing comes and changes and turns somebody’s world upside down, there’s a level of stress. Right?

[00:08:16] And the pelvic floor reacts to stress. So, think of those muscles as a bowl, and all of a sudden, we’re holding on for dear life. A, first of all, because it’s sort of you’re holding on for dear life because you want to stand up and try to make your — that’s the only thing you can kind of feel, right, is, like, trying to get your core to work and trying to turn that on.

[00:08:34] Then it progresses to, I don’t want to leak. So I’m holding my pelvic floor really tight because I don’t want to leak. And so, again, nobody really works on that recovery of it, and then doesn’t — it’s important to identify that it is so linked to stress and our emotional system, and every time we’re worried or, again, we’re stressed, we’re constantly creating tension patterns in our body.

[00:09:06] And from my experience, what I see, I can give an example, wondering, will I ever be normal again? Will I ever be able to, for example, have an orgasm again? Will I ever be able to have an orgasm again? And as a therapist, it’s really hard because I don’t know, there’s so much we don’t know about this. Right? So, I have to really approach it from, really, a therapy standpoint. We don’t know the answer. Right? And that’s what drives everybody crazy. We don’t know the whys, really, with exceptions. So, I don’t generally have the answers to the, well, will I ever again?

[00:09:48] However, I’ve seen some — the pelvic floor is such an amazing group of muscles that you can train them, and we can train them to, and the brain is, the body is amazing, so we can start to train things to work again. The bowel and bladder are two of the most trainable muscles, organs in the body, and we can start to train them again.

[00:10:09] And we can start to get them back onto a schedule so that you can have a life again. And part of getting rid of the fear of, what if I don’t? It’s like, well, what if you do? And what if it’s just that now it’s different? It doesn’t mean we’re never going to, but let’s figure out how to get there, and it might be different. But it doesn’t mean — for most people, they’re able to get back to some sort of, I think a functional bowel-bladder pelvic floor.

[00:10:40] Krissy Dilger: Awesome. So, can you explain what pelvic floor therapy involves, like, mechanically?

[00:10:49] Jessica Ekberg: Yes. Absolutely. Okay, so the first thing I will say is that most people are a fret about the internal examination, for men and women, and that is something that does not have to be done. So, please, if anybody out there, if that is what’s preventing them from going, please know there are so many other things we can do. Is an internal assessment helpful? Yeah, sure.

[00:11:13] But we — again, tons of other things that can be done to get some of the same results. So, when I see someone, we take a pretty thorough history, and that includes things like, did you ever have a bad fall off of — because I might get somebody that’s 25, and they’re like, never really had any surgeries, never really — but I was a gymnast or but I fell off this horse when I was 12 and whacked my tailbone or. So, I find a lot of little clues in people when you sort of take the time to listen to their whole story, it’s like, oh.

[00:11:46] A professor I had once told me or told us that if you listen, people will usually give you the answer. Right? And so, I spend a lot of time listening and putting things together. And I think sometimes for people, just their ability to tell their whole story, and then they realize, well, they have been constipated since they were four, just not knowing that that wasn’t really normal.

[00:12:10] And so, doing a good thorough history, I go back to, again, as a little kid, what were the attitudes around peeing? Was mom always like, you got to go pee. You got to make sure you pee before you leave the house, and you got to make sure you pee if you have a chance to pee. Or around food and bowels.

[00:12:29] And it’s really interesting, because we don’t talk about this stuff, what people’s perception is of normal. And that’s another interesting thing too. So, working, I kind of go through that history, and then I do, my first two go-tos are generally posture and — sorry, my first go to is explaining the pelvic floor, what it is, how it functions in the body, and the main idea is that it is an interworking system between the respiratory diaphragm and the pelvic floor, and they make up the top and the bottom of the core.

[00:13:09] And if they’re not aligned and they’re not working together, moving together when we breathe, we end up with a mismanagement of intra-abdominal pressure. And that’s what I would say is the key to most pelvic floor dysfunction, and most chronic low back pain, most knee pain, hip pain, post pregnancy rib issues, breathing issues, all these things.

[00:13:32] And so, we go through posture to make sure that we have some good alignment, and we go through the breathing process. And usually with just those couple of things people say, oh, you know, oh, well, I didn’t really know that. And that’s where we start, and from there, I create a kind of a plan, but what I’ve learned is the best laid plans never really go accordingly, so I try to follow where the body’s going and what people understand and what people don’t.

[00:14:01] Most people look at me when I say, can you contract your pelvic floor? And it’s like a deer in headlights. Like, I don’t know. I think I can, but I’m not sure what it is. So there’s a lot of analogies used to try to explain what it is and for you to be able to get an idea. It’s not like when you make a bicep, it’s really trying to understand and feel it.

[00:14:26] Krissy Dilger: Wow. That’s great. I honestly didn’t know what you just explained. Like you said, people react like, oh, I didn’t know that. Well, neither did I. So that’s certainly useful to know. So, can you explain how maybe neuroimmune or autoimmune disorders affect the pelvic floor and how pelvic floor therapy can help people with these disorders, specifically?

[00:14:59] Jessica Ekberg: Sure. Again, I think the hardest part is that most of us therapists, we like the cause and effect. I want to know if this happens, this is why, and specifically with the autoimmune disorders, again, we kind of lack that cause and effect and something just took the body over.

[00:15:21] And so, when I approach treating someone with that, we go back to what was the origin of it, where did it start, what spinal segments or levels did it affect, and then we kind of break down what the — I treat it like a spinal cord injury or a brain injury. Right? That idea of, okay, at this level, we kind of go through probably what would happen to someone where they have an injury like that. Probably or most likely what they went through. Right? And where they’re at, how they’ve come back from that, and this is where we’re at, and these are the nerves and the muscles that are firing and working, and some of them aren’t communicating well.

[00:16:04] And based on what they’re — we really focus on what they’re able to do. What can you do? And based on that, it gives me an idea of what to move on to next, what — based on my experience and just knowledge of the nervous system, where can we go next? And then, again, a lot of it is really getting people to work on letting down some of that guard, that tension and that stress of — because I’ve heard several people say they’re just waiting for the shoe to fall. Right? Like, it’s just the shoe to drop. Like, I’m just waiting for this to happen again.

[00:16:43] And so it’s really working on, I think once we get to a point where there’s a little bit of buy in and relaxation, we can kind of see what the body can really do. But guarding is, again, it’s such a natural response by the body. It’s supposed to do that, it’s supposed to guard you from pain, and our body wants to keep us alive. And so, it will shut down whatever it needs to shut down to keep you alive.

[00:17:09] Again, pelvic floor is really tied into that, and many of my sessions are spent just trying to get people to what I call relax the pelvic floor or lengthen the pelvic floor, eccentrically load the pelvic floor, however you want to look at it. But from a basic standpoint, there’s tension we’re holding, and it’s reminding people, no, no, we’ve got to relax that a little. We’ve got to allow this pumping and the pelvic floor to work with the diaphragm, and all the breathing that goes into it really starts to calm the system.

[00:17:41] And everything starts to re-regulate because the nervous system needs that calmness. We can’t be in a fight or flight pattern all the time, and breathing is fight or flight. Right? If we’re breathing real shallow breaths and up into the chest, we’re just creating this fight or flight pattern, and we have to really break that and break it on a regular basis through the day.

[00:18:04] And so, a lot of stuff that I teach is stuff that you take with you, and you just have to take note of where you are in your life. Like, I’m standing in line at the grocery store and I’m like this, or am I getting really upset in pelvic floor muscles? So, I don’t necessarily need them to come along to write an email, right, when I’m really stressed or aggravated. I do need them to come along to help me pick up a boulder or to hold back my urine or to stabilize my pelvis, but I don’t really need them to be there when I’m stressed. And so, it’s kind of differentiating that a little.

[00:18:44] Krissy Dilger: Great. Yeah. It sounds like a lot of pelvic floor therapy is not just physical exercises and strength thing, it’s a lot of mental and emotional work as well, which is interesting.

[00:18:57] Jessica Ekberg: A hundred percent. And it’s funny because sometimes I don’t even really know, I’ve just seen it enough and experienced enough, I don’t even really know what happened. But somebody releases something and they look at me, I’m not really sure why I’m crying, and they’re not physically upset, but it’s just sort of like, oh, and then we let something go and we become okay. And it’s a new part of the body we’re exploring.

[00:19:22] Krissy Dilger: Yeah. So, can you — is pelvic floor therapy suitable for anyone with any kind of physical limitations? For instance, if someone is paralyzed from the waist down, or how do you accommodate people with this kind of physical limitation?

[00:19:43] Jessica Ekberg: Sure. I would say, I think it’s important that we have to meet each other where we’re at. And, again, I just, I really feel like I focus a lot on — I don’t know how to explain it. If you were to come into me, I look at you as — I mean, I know the history and I know what you’re coming to me for, but I’m looking at you as, like, this is you. This is who you are. This is where we’re at, and let’s see what we can do from here. Right? And so I’m almost — and they say that meaning I’m treating you like — this is going to come out wrong, like a regular, like, you’re just another patient. Right?

[00:20:31] And I mean that in the most loving of ways. But it’s coming in okay, let’s see how can move with what you can do. Let’s see how you’re moving. Can we make that moving better? Is there a way we can open up your spinal cord — the range of motion, your spine or your pelvis so we can get some better blood flow or things like that? Because they’ve done a lot of the hard work, people that come in have done so much hard work, and so now it’s my turn to say, okay, let me show you some things and let me do some work here, and I want you to kind of believe in the process. I don’t know if that answers anything, but it’s hard to.

[00:21:12] Krissy Dilger: Well. Just to know that it’s possible for someone to, it’s worthwhile for them to seek out pelvic floor therapy.

[00:21:18] Jessica Ekberg: A hundred percent.

[00:21:19] Krissy Dilger: Yeah. Okay.

[00:21:20] Jessica Ekberg: I mean, this has nothing to do with an autoimmune disease, but I have a gentleman that he sort of has an older gentleman presentation, a really hard belly. Right? He’s always kind of breathe way out into his belly really hard and is up real tall. And just by changing his breathing, we’ve managed his leaking. He, again, probably TMI, but he’s able to have an erection again. All these things that he had kind of put out the window. So that’s what I do love about this, is I think I start to work on areas that we take for granted. We take for granted how we stand and how we breathe. Right? Like, we’ve been doing it for a lot of years, so we don’t think about it.

[00:22:02] And when somebody starts to adjust certain things again, it’s not a guarantee, but most of us have come to this place in our life with a lot of hard work and a lot of compensation because we’re trying to get through it, and to start to break some of that down a little more, I think is — there’s huge benefits, even if it’s a matter of somebody knows how to breathe and their stress is less, and now they’re not peeing as much or they’re not feeling as urgency or they’re not having pelvic pain or they’re — those type of things.

[00:22:35] Krissy Dilger: Got it. So, is pelvic floor therapy kind of an ongoing process? Is it something someone will have to continually go in for, or is the goal to kind of reach the point where you can function without actively going to the therapy, while still practicing the exercises, perhaps, that you learn?

[00:22:55] Jessica Ekberg: So, I think the goal is that you graduate. I have patients that will come back once a month, once every few months. And I work with a runner, in particular, and we work through a lot of injuries for her. And she’ll come back for what we call tune up. We go through everything, making sure her posture is good, because she’s starting to increase her speed, or things that would put more demand on the core and the pelvic floor.

[00:23:25] And then some people, we have very specific goals, and they want to not have to worry about doing exercises for the rest of their life, and they’re like, this is what I want, and this is enough. And that’s good enough.

[00:23:40] And then we really talk about management. Right? What can you do if you feel these symptoms now? Now that we know what these patterns, where it led you, and we’ve backed down out of that, so now we’re kind of re-developing new patterns. When you start to feel hints of those things coming back, this is how you’re going to manage it, or this is what I want you to do or what I want you to think about.

[00:24:06] Krissy Dilger: Yeah. That makes sense. And I know, just people might want to continue on with therapy, but with insurance and everything, especially in The United States, it can be tricky.

[00:24:19] Jessica Ekberg: Oh, don’t get me started.

[00:24:22] Krissy Dilger: Yes. Yeah. So, I guess, I’m kind of coming towards the end of my questions. My one last question would be, if someone was considering listening to this podcast now and thinking, I might really benefit from this, how could they get started? Would they go to their general care practitioner and ask for a referral, or could they schedule appointment directly with a pelvic floor r therapist such as yourself? How does that typically look?

[00:24:54] Jessica Ekberg: So, usually, most people will go through, like, if it’s a more — how do I say it? PCP will generally give a referral to urology if there’s an issue. Right? And then urology will refer to me. Or PCP might just say, let’s try pelvic floor therapy for these things. But, usually, I’ll get a referral from a specialist. But then there’s the other side of it that I think a lot of people with chronic back pain will be like, I don’t know. Somebody told me to come. I don’t know what you’re going to do for me. I’m not sure how this involves my pelvic floor therapy. And in that case, reaching out, you could reach out to the pelvic floor therapist or the company directly, and they’ll oftentimes be able to reach out and get a referral for you.

[00:25:44] Because, again, a lot of people just don’t know, like, “I don’t really know why I’m here.” So, yeah. So you could approach it either way. I would just always call and talk to people and ask questions. Do they do manual therapy? Do they do internal assessment and internal work? Do they work with machines a lot? All those types of things. Don’t be afraid to ask questions.

[00:26:08] And, also, if you don’t connect with someone, in my opinion, especially knowing my limitations or what I’m good at and what I’m not as strong at, really encouraging somebody, if we’re not the right fit let’s find you somebody that is, because this is really personal stuff, and you just don’t –people get very frustrated very quickly, so I don’t want people to give up.

[00:26:32] So if you find someone and you’re like, don’t go for weeks and be like — if it just doesn’t feel like it fits, then it doesn’t fit. And I would hope most practitioners would embrace that and say, well, I’d rather somebody tell me and we either find someone or we figure out a way to help. Because I know it takes a lot for people to come in and talk about all these things that are kind of taboo, so.

[00:26:59] Krissy Dilger: Well, thank you so much. That is the end of my questions, and I just –was there anything we didn’t cover that you’d like to add?

[00:27:08] Jessica Ekberg: No. I think I’m very appreciative for your time. And, yeah, I think it’s just really important to — I think it’s a underutilized service that there’s a lot of kind of hidden benefit in. So if people are looking, keep your mind open.

[00:27:29] Krissy Dilger: Great. Well, thank you so much, and I appreciate your time today.

[00:27:33] Jessica Ekberg: Thank you.

[00:27:38] Krissy Dilger: Thank you to our “Ask the Expert” sponsors, Amgen; Alexion, AstraZeneca Rare Disease; and Genentech. Amgen is focused on the discovery, development, and commercialization of medicines that address critical needs for people impacted by rare, autoimmune, and severe inflammatory diseases. They apply scientific expertise and courage to bring clinically meaningful therapies to patients.

[00:28:04] Amgen believes science and compassion must work together to transform lives. Alexion, AstraZeneca Rare Disease is a global biopharmaceutical company focused on serving patients with severe and rare disorders through the innovation, development, and commercialization of life-transforming therapeutic products.

[00:28:25] Their goal is to deliver medical breakthroughs where none currently exist, and they are committed to ensuring that patient perspective and community engagement are always at the forefront of their work.

[00:28:37] Founded more than 40 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures, and commercializes medicines to treat patients with serious and life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit www.gene.com.