Learn about endometriosis and pelvic health physical therapy to manage chronic pelvic pain. Dr. Caitlyn Tivy shares her experience and expertise to help women find relief.
Episode Summary
In this final episode of Fempower Health's four-part series on endometriosis, Dr. Caitlyn Tivy, a distinguished pelvic health physical therapist, shares the intricacies of managing endometriosis and pelvic pain. With a foundation in biomedical research and specialized training in pelvic floor physical therapy, Dr. Tivy emphasizes the importance of patient involvement, holistic treatment strategies, and the role of emotional health in physical well-being. She highlights innovative developments in telemedicine and the exploration of the vaginal microbiome as promising avenues for future advancements in pelvic health care. We discuss the intersection of physical health, PTSD, and trauma history in pelvic pain treatment.
Key Takeaways
How combining manual therapies, patient education, and at-home care can lead to significant improvements in managing endometriosis pelvic pain
Why being an active participant in your endometriosis treatment plan can dramatically impact pain management
How telehealth is breaking barriers to access pelvic pain treatment, offering new hope to those in remote or underserved areas
The latest research on how the vaginal microbiome impacts pelvic health and what it means for the future of pelvic pain treatment
How the brain and nervous system contribute to your experience of endometriosis and pelvic pain
Why consulting with a pelvic floor physical therapist post-surgery can improve your recovery process
Myths around pelvic floor exercises like Kegels vs. their appropriate role and application in pelvic pain therapy
A complex story about an endometriosis patient and the multifaceted approach to her recovery
"How can we turn down that person's fire alarm so that the rest of their body isn't getting inundated by this irritating stimulus? Even if someone hasn't had surgery or doesn't intend on having surgery—or is not a candidate for some reason—there's still a lot that we can do to help people manage their ‘pain’ alarm system. We can create self-care strategies that keep their alarm quiet long-term."
- Dr. Caitlyn Tivy
Related to this episode:
Resources for Endometriosis
Follow Caitlyn Tivy on LinkedIn and her website
Part 1 of 4: Innovations in Endometriosis Diagnosis, Pelvic Pain Management, and Patient Support
Part 2 of 4: Endometriosis Care, Treatment Options, and Patient Advocacy
Part 3 of 4: Endometriosis Surgery, Recovery, and Personalized Care
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Transcript
Caitlyn, I am so excited to have you on the podcast. We are talking about endo today and, really pelvic pain, because let's face it, it's not just always endo, and I think we do need to go broad. I know I've done a very long series on endometriosis specifically, but I I do think it's helpful to to cover this from a chronic pain perspective. So before we dive into all the great questions, I would love for you to share with us your background.
Certainly. Yeah. And thanks for having me, Georgie. Really, really excited to talk about this today. So my background, I have a clinical background as a pelvic health physical therapist. So I'm specialized within the realm of men's, women's, and, pelvic health for people of all genders. But these days, I spend the majority of my time performing medical writing and consulting for women's health and LGBTQ plus health companies. So I get to use both sides of my brain, the clinical patient care side and the more analytical research deep dive side of my brain.
And endometriosis and pelvic pain are big passions of mine to to teach people about.
Why don't we first just dive into what pelvic floor PT is and also even pelvic floor rehabilitation? So first, let's just do a quick skinny on what that type of job is, especially for those who haven't listened to all the discussions on, the pelvic floor that Fempower Health has done in the past.
Certainly. Yeah. Great question. I think the important thing to understand is that pelvic health physical therapy is a really specialized niche within physiotherapy or physical therapy, depending on where you live. And it requires more advanced post doctoral training. So in the US, physical therapists have doctorate degrees, and then those of us who specialize in pelvic health receive additional training after we complete our doctorate to specialize. And I like the term pelvic health because it respond it corresponds to a wide or excuse me. I guess it encompasses a wide variety of things that we can help people with and treat.
I tell people our primary job is to examine, evaluate, and then treat any dysfunctions associated with structures in and around the pelvis. So a lot of people will think immediately of bladder and bowel concerns their pelvis, like pregnancy, menopause, etcetera, or conditions that people acquire that affect their pelvic health, like gynecologic cancer or prostate disease, those kinds of things. And then another huge umbrella that we include are the pain conditions that affect the pelvis and the structures around it. The other really important thing to know is that we still approach the way we help people from a whole body perspective. You can take the pelvic health out of the PT, but you can't take the PT out. Right? We're still whole body practitioners, and we have to look at all the tissues that can influence the pelvis. We're not walking pelvises, we're full human beings, right? So, a pelvic physical therapist is going to be thinking about the muscles and the nerves that control them in in the pelvis. They're gonna be thinking about the connective tissue that hold all that stuff together, essentially, like the sinew in between, all the tendons and ligaments in that area, the joints in between the bones of the pelvis and the associated structures, the organs in your pelvis, like your bladder, your intestines.
And then they're also thinking about everything attached. Your lower back, your hips, your thighs, all the way up into that the diaphragm and the jaw. So we really look broadly to try to figure out what's causing the person's problem and then how we tackle that.
And and I think it's really important the way you introduce this. Right? Because we do in this whole field of health care. It's like, what is the thing you have? And then it's usually, here's a pill or here's a surgery or here's the cast for your broken arm. It's like such this, like, linear path, and it is so complex. So I think starting with that introduction is so important. So in this series, you know, I have spoken with experts to talk about, like, for example, with endometriosis. You know, some say if you do the surgery properly, the pain should be gone. We could argue back and forth around whether or not that's true and whatnot, and and I don't wanna use that here, but I just wanna say, like, people are gonna hear different viewpoints, throughout this series.
And so this could be for the women who still had surgery and still has pain. This is someone who may be struggling to get a diagnosis, and maybe it's not endometriosis. Maybe it's something else. So I just wanna at least layer that in, in case people are listening to this series in the order. We could start with how do people come to you and but let's just go with this understanding pelvic pain and what a pelvic floor PT can do. What are the dynamics of what's happening in the body that pelvic floor PT and rehab can do for pelvic pain? Yeah. And then I guess it's for you to tell us, does it matter if it's endo versus this versus that? Can you guide us?
I think that's one that people forget to ask is what's the mechanism behind this, and then how do we approach it? And I love that you touched on the fact that there are varying opinions because practitioners are gonna have varying opinions. And the latest research, still, there's a lot of, controversy and a lot of variation in what you'll see in the literature about what causes endometriosis, what causes other types of chronic pelvic pain, and how how how much we can change it. So I'll give you my clinical perspective and experience along with what the most current literature, has been saying lately. I think the most important thing to understand is pain is complicated. The process and experience of pain is a really complex thing. That's one of the most important things that I think someone with a chronic pain condition of any type of chronic pain, but particularly pelvic, needs to understand is the neuroscience behind how pain works. Traditionally, medicine has really approached pain conditions and pelvic pain very biomedically. Okay, we're going to go in and we're going to look and we're going to find the lesion.
We're going to find what's wrong, what joint is screwed up, what muscle isn't working, what's torn, etcetera. They wanna find a visual, visible problem. Right? The more we learn about pain science and the way our our nervous system works, the more we understand that particularly in chronic pain conditions, the lesion, a physical problem, and the person's symptoms, their experience of pain or other problems, don't always match up. And you had, posed a great question to me about, how much the stages of endometriosis, for example, impact treatment. And the short answer is kind of, in my world, not a ton in most cases. Okay. Because there's not a direct correlation. I've worked with people with die with diagnosed endometriosis that is very, very severe.
They have a lot of of lesions in their pelvic cavity that have been identified, and they have little to no pain. Alternatively, I've seen people with either no diagnosis, they've been told they don't have no, or they've been told it's extremely mild, or whatever pain condition they have is extremely mild, And they have substantial pain, and they're really incapacitated. So we have to understand that there's a not always a link between the true lesion and the pain you experience. So I think I think when we when we dig into the pain science more, it's really important to understand that that disconnect. And that's one of the first things that I, as a pelvic health practitioner, dive into when I'm working with someone with chronic pelvic pain. Regardless what their underlying medical diagnosis is, I wanna make sure they have a clear understanding of the pain science. And I really wanna clarify too for listeners as well. This is we're talking neuroscience here.
We're not talking psychoanalysis or psychotherapy. That is not my realm of expertise. And psychotherapy and mental health have huge roles to play in this in this area, but that's not what I'm I'm talking about here. I'm talking about the physical chemical reactions that are happening in the brain and the spinal cord. So the best analogy I have, and this is one of my favorites, is think about any chronic pain condition as a ongoing alarm in your body. And imagine if you if you had a fire alarm going off in your house all night long, you didn't turn it off, eventually, your neighbors are are gonna get really annoyed, and they're gonna stick their head out the windows and go, Georgie, turn that thing off. It's driving us crazy. Right? That analogy has a a really great way of explaining how something like endometriosis or other pelvic conditions can cause pain in a lot of different areas in the body.
How tissues neighboring the uterus or neighboring the other organs that are affected commonly in endo can be become painful for someone with endometriosis. So there's this kind of alarm system that we have to understand, and we also have to understand how we turn that down. And that's a lot of what pelvic PTs and other pelvic rehab professionals focus on. How can we turn down that person's fire alarm so that the rest of their body isn't getting getting inundated by this irritating stimulus? Right? Even if someone hasn't had surgery or doesn't intend on having surgery or is not a candidate for some reason, there's still a lot that we can do to help people manage their alarm system and and create self care strategies that keep their alarm quiet for the long term, if that makes sense. Mhmm. So that's a huge area of focus for us. There are a lot of other techniques and modalities that we can use, but that's usually the first starting place is understanding the science behind it and how much control you as a patient or I'm using the general you. You as the person with pelvic pain have to influence your own symptoms.
Can you help us understand when you're trying to figure out what might be going on, what can women say to you so that you can start to figure out? Because they're gonna have to monitor it and not like what that that happened that morning. They probably have to know things over a period of time, right, to be able to better explain it to you.
Medicine and health care have become so complex, and we have so much more science now that no one provider can be it all or know it all. And any provider that tells you they can, that's probably a red flag. We have to admit even as the the so called experts in our field that we don't know everything and each person's body is super unique. So I really encourage women and other people with uteruses that are going through this this journey to become partners in their own health care and to seek out providers that are willing to partner with them and not to be a a step above on the ladder, if you will, but really to come down to to their level and and have a conversation. And I agree. I find that the people that come in prepared with their own data that they've kept track of and their own research are much, in some ways much easier to work with and easier to help. And it's not putting the onus I don't want to put the onus completely on patients because we as providers have a duty as well. And I know many people with chronic pelvic pain especially who have been gaslit, who have been felt unheard, who have just been misunderstood in some way.
I recognize that that sort of medical trauma. But the people that come in knowing about their own bodies and tracking it, in very clear ways and who have done their own research and have clear questions to ask do better, especially if you're consulting with a physician colleague. Because I really feel for my for my physician peers because they have so little time in the way that our medical system is structured now. Not because they don't wanna talk to you or don't wanna help you, but the big guys up in the insurance world are are very much limiting how much time they can spend with you. So the more clear and concise one's questions are going into a medical visit, the more likely are you are you're you are, excuse me, to get the answers that you really need rather than bouncing around and getting lost or overwhelmed in a conversation. So I love that point about being being prepared with the questions that you want to ask so that you can help guide the conversation to what matters most to you.
What are examples of things people should track regarding their pelvic health before seeing their doctor?
There's so many apps and and handy tech things out now for to help people track. Even if you're not an app person, you can still keep track of some of these things. And if we're thinking about pelvic pain specifically, especially if you suspect you might have endo or something like it, tracks tracking menstrual cycles seems kind of obvious to some folks. Like, okay. When do I get my period and how long does it last? But there's a little more to it that you can get into. Tracking the heaviness of your flow can make a big difference. I've had people come in and say, Caitlyn, I go through a tampon every hour, or I have to change my pad 7 times a day or to 12 times a day. And they think that that's a normal amount of flow, that's really heavy.
Really, really heavy. But they've always been like that, so they don't know. So keeping track of of the heaviness of flow, and if you're noticing, clotting, a lot of, like, clear visible clots, those can be signs of extremely heavy menstruation, which is pretty common in folks with fibroids and endo. And then tracking pain somewhat specifically. Not obsessively, but here's the thing about pelvic pain. I'm gonna take a slight little detour here, so so follow me for a second. I think it's important to understand that that there's kind of several components to pelvic pain that we think about. There are there's visceral pain, referred pain, and somatic pain, are kind of the 3 types I think about.
Visceral pain is essentially pain related to your internal organs, the visceral, and it's really diffuse. Organs are not like our skin or other sensitive areas of our body. If I reached through the camera right now and poked you on the forearm, you would be able to tell me, hey, Caitlyn, you poked me there, and it hurt right here. And you'd be able to localize where I poked you quite specifically. Organs aren't like that. Very they're much more broad and they don't really send us good signals of where pain's coming from. So that's one type of pain. Referred pain is pain anywhere in the body that's coming from somewhere else.
You might have heard stories of people going to the heart, going to the emergency department and finding out they have a heart attack and being being surprised because they had pain in their arm. Like, why does my arm hurt? It's my heart. That's referred pain when the organ is sending signals elsewhere to cause pain. And then somatic pain is somatic just refers to the body. This can be typically pain that's resulting from really tight or tender muscles or things like ligaments, tendons, other things that we associate with our skeleton and our muscles. And in pelvic pain, all three types of these can overlap. You can have very point specific pain from a tender muscle that you can point to your hip and go, hey, it's right here, I can touch it and it hurts. You can also have really diffuse visceral pain from the uterus or elsewhere that's broad and you're just like, I don't know.
My whole lower half hurts right now. I can't even tell you. So being able to track those, whether it's in an app, and they make those. They have apps that'll let you track that, Or whether it's writing it down, that will help you see patterns. It'll help you explain the symptoms better to your provider, and it'll also help you notice, oh, is my pain pattern cyclical? Is it following my cycle? Because in pelvic pain, pain can be both cyclical with the cycle and noncyclical outside of your period cycle. So having those things tracked can be huge. The one other area I would say to track is general other pelvic organs. Your bowel and bladder habits can be deeply affected by endometriosis and other pain conditions.
So if you're having trouble emptying your bladder, if you're constipated, if it hurts to poop, things like that, those are great to note because that adds to the constellation. If sex is painful or if it's become less enjoyable than it used to be, you wouldn't call it pain, but something just isn't right. Those things can all track. And so many people I talk to don't realize. They're like, I didn't even think to talk about my bladder. I thought it was totally unrelated. I thought it's because I had a couple kids. Didn't realize it was connected to my endo or my pelvic pain.
If you're in menopause as an example, you could have bladder issues because of the hormone changes. I just started taking vaginal estrogen because I am preventing genitourinary syndrome of menopause. I look on this kick.
I love it. That's so smart.
Sorry sorry to be, you know, butting in, but have you taken a vaginal estrogen? Like, I literally say this to so many people. Can you please listen to this episode about genitourinary syndrome of menopause?
Bowel movements. Let's face it. If you're eating a ton of cheese, you're gonna be constipated. You know? So it's it's complex. Right?
And I'm assuming you guys ask those next level questions when they so we don't have to, like, memorize everything. It sounds like this basic list is sufficient. Keeping it clear and consistent is the most important thing. So even if someone only is able to track their menstrual cycles and they forget to track everything else, that's that's still something. It still gives us some information, and then the provider can dig a little more. But I typically find that when there's a constellation of symptoms, bladder concerns, painful sex, really heavy periods, high fatigue, then my brain starts going, okay. What else is going on underneath? It's this isn't just a painful period. This is something more.
I was surprised when folks have said they write down a lot of stuff and don't use the app. So I'm curious as someone who is seeing folks, what are you seeing? Because there's so many apps out there, and I've always been curious about the usage. I think it's starting to go up as we continue and more and more apps are out there.
People are getting used to tracking that way, but I'm so curious what you're seeing. Yeah. Paper or app? It's a mix, I think. Okay. I live personally, I live in a pretty rural area of Colorado, and there's a lot of kind of old school mentality here. So I get a lot of people that write stuff down. Okay.
But when I lived in a big city in Austin, Texas for a while, it was kind of the opposite. Everybody was super techie. Okay. I think it depends generationally as well. I find that Yeah. That millennials and Gen z are more likely to be using apps than, say, a baby boomer, but not always. Not all the time. Okay.
And the one thing I do think about though with apps is I think a lot of folks have app and notification fatigue. So some people just find it refreshing to just write on pen and paper because they're so tired of being overstimulated by their phone. I don't think there's one right answer. I think it really is dependent on the person and what you need. But as long as you're keeping it consistent, that's gonna be the most valuable metric for you.
Yeah. No. I agree. Alright. What I'd love to do more is, like, actually managing the pelvic pain. What are the types of things that can be done in the office, and what are the types of things that people may do at home?
Great question. And I love that you separated it into 2 parts because they are distinct, the office work and the work that you do at home, and they're both critically important. So when we're thinking about the lens of chronic pelvic pain, the first thing that I personally, and I know many of my colleagues, really work to do is to make the clinic a very safe space because people with pain condit