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
If you want to support this women’s health podcast, leave a review for Fempower Health on iTunes or Spotify.
Spread the awareness and share this episode with someone you know!
Support and connect with our women’s health community:
Subscribe to the Fempower Health Podcast for new episodes every Tuesday
Visit us online at www.fempower-health.com
Sign up for our weekly newsletter for the latest announcements, news, and research
Email us for inquiries & outreach: info@fempower-health.com
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 conditions have often had a lot of both mental, emotional, and physical trauma related to to medicine, especially gynecological exams. So we try to really remove that trauma component, help people feel safe, and help them feel in charge so that if their body isn't ready for a certain treatment or intervention that day, they can say no. We can put it off for that day or forever, depending on their preference. Traditionally, physical therapy in the past had been very associated with a lot of passive treatments, things like electrical stimulation or, therapeutic ultrasound or laser therapy, all these things that a practitioner would apply to you while you lay there and accepted it. And there's a place for those, for sure. But a lot of the field is now moving away from those kind of physical passive modalities and more to things that require patient participation or ask for it, I should say.
I think a lot of my practice focuses on manual therapies, treatments that I can do with my hands, but also very heavily in patient education and home programs. You'll hear about home exercises a lot when you think of physical therapy. Someone you know goes to PT for their knee, and they get some exercises to do. But I don't think that that term really encompasses the whole picture in pelvic PT. You might have a physical exercise or 2 that you're given, but you also might get a guided relaxation to reduce muscle tension in your body. You might might also have your physical therapist recommend you keep a bladder diary to track your bladder symptoms or that you consult with an a dietitian to slightly change some of your, dietary habits because they impact your bowels so much. So home program is probably more broad. The things that we can do in the office and especially that are becoming more and more popular in pelvic PT these days, I mentioned manual therapy, which includes things like massage or, as we call it, soft tissue mobilization, that can be applied in and around the pelvis.
So you'll hear about people having, manual therapies applied to their hip or their lower back or even their upper back and their trunk and their diaphragm because it's all linked to the pelvis. You'll also hear potentially about folks having internal work, intravaginal or interectal work performed, And people go and their eyes get really big when they think about that. But important to know that a pelvic PT or pelvic OT's approach to a pelvic treatment is very different from your speculum exam at the gynecologist. And PTs generally that work in this space and other professionals, many of us try to train additionally in trauma informed care. And there's a lot of discussion around trauma informed care and how we can make the experience more more positive for folks undergoing something that was traditionally seen as invasive. Now internal work is not required in all cases. So if someone's not comfortable with it, I'm not gonna force it. It's gonna do more harm than good.
I've worked with people that are really uncomfortable with touch in general. They've never really been touched by a provider or they've had a negative experience. So each person's treatment plan is very unique and tailored in that respect. But there's also an increase I'm seeing too in my field in visceral work as well. Work directed towards the connective tissue that surrounds internal organs because as I'm sure you've learned and discussed with other folks, there's this idea that there are these internal adhesions or essentially scar tissue, you can think of it, in between organs in people with endometriosis. Not in all cases, but in many. And this visceral manual therapy that some of us are trained in can be really effective in managing that tissue and helping to change the neural input to it. It's not quite so simple as to say we're breaking up the adhesions.
I don't really believe, and the research doesn't really support that. But, clinically, I do see an effect. When someone has visceral work done, it does tend to change their pain or their other symptoms, so that's kind of up and coming in the field as well. So of taking a step back the broader view is expect likely manual therapy to be at least recommended to you, and then expect your pelvic physical therapist to give you homework. There are 168 hours in a week. You're seeing your pelvic PT maybe for 1 or 2. You're responsible for the remaining 166 hours. Right? What you do in that time matters way more than anything you're doing in that hour or whatever it is with your therapist.
Georgie Kovacs:
Do you recommend even folks that are about to or after, like, an endo surgery or even fibroid surgery or anything like that, hysterectomies even, like, where from a sequencing perspective in an ideal world. So I'd love for you to paint that picture of, like, how it fits in to current modalities of treatment. Obviously, not everyone needs surgery. Not everyone can afford it, all that stuff. But, you know, maybe you can just help us understand that.
I'm a big believer in meeting people where they are, and I've worked with enough populations that have limited to no access to know. The going frequently is not a either a ideal situation or really a goal for us in this in this space. We need to meet folks at their ability, financial, you know, their time, etcetera, their ability to access care. Generally, more the more chronic an issue, the more complex it becomes to treat. Not always. K. But I will say that I think many practitioners would agree with me and that folks with chronic pelvic pain tend to be a bit more complex and involved to manage than someone who's coming in for a few treatments postpartum to help them return to their activities.
So that's an expectation to have. In my opinion, everybody should get at least a consult with a pelvic physical therapist after surgery. Now think about it. If you go in and you have a knee replacement, where's the first place your doctor is going to send you? Rehab. Right? You go in and have major abdominal surgery, and most people don't get recommended anything. It's changing, it's getting better, but still we have a very high disconnect between the way we treat orthopedic surgeries versus how we treat abdominal and pelvic surgeries. They're both major traumas to the body. So I think in a perfect world everybody would at least consult with a rehab professional post post surgery.
I often find that folks, if they haven't had any pelvic pt in their life before and they know that they're planning to go in for surgery for endo or something else, it can be really helpful and comforting to establish a relationship with their intended provider before surgery. Okay. Especially if they have a trauma history or they're really nervous. Because then you get a chance to set your baseline and get develop that rapport with the provider. It's not always possible, but I think that even just one pre surgery visit can be really huge in helping someone's post surgical, recovery. And then what ideally should happen is that your provider should work with you. If you're in a financial space or a location space or a time space that doesn't allow you to come and see someone frequently, they need to be willing to discuss that with you and offer the pros and cons and what your options are. And virtual care is becoming more and more relevant and possible, and I've seen it do wonders.
I worked in telehealth for pelvic disorders specifically for almost a year, and I saw really impressive outcomes. Yeah. I couldn't do the manual therapy. I couldn't put hands on, on, so we couldn't get that input, but I could teach people to do some of that themselves, which was really awesome to see. So there are options for that. And I think even just having that connection and the education can go a long way in helping people. My job as a as a clinician is to put myself out of business. If you go into someone and they're they're they meet you and the first thing they suggest is, oh, yeah.
Well, we need you in here 3 times a week for 12 weeks, and let's schedule it now. That to me is kind of a red flag. You they need to evaluate you first and talk to you about your life circumstances before they recommend a plan of care. So keep that in mind, I think, for any listeners that are, contemplating this this type of care.
Back to an ideal situation. If you think of patients that you've seen, are there maybe just examples of maybe how like, what you've had to do with your most difficult patient, and were you were they able to be helped?
There are there are 2 that popped to mind when you asked that question. One was a woman I worked with some years ago who who had endometriosis and had, I believe, if I'm thinking correctly, if I'm recalling, I first met her after she had just had a full hysterectomy. So they had removed the uterus, the ovaries, the fallopian tubes, all 9 yards. And it is unclear to me from her her history whether or not the surgeon also performed a full excision where they tried to remove all of the endometriotic tissue they could find. That is a very complex procedure and very specialised. Regardless, this patient was complex because she didn't have a lot of financial resources. She lived about 45 minutes away in a mobile home, and her partner wasn't particularly understanding of her condition. Also struggled to experience how her libido changed after having her hysterectomy and as she was approaching her mid forties.
There was a lot of complexity there. She also had some chronic fatigue syndromes that made it really hard for her to keep up with her self care routines. There are some days where just getting out of bed was a real challenge, let alone doing any of the things that I recommended for her. But she did keep coming, and she did there were some weeks where I would I was internally frustrated with myself because I felt like I couldn't give her enough. But she was still taking what she could from what my recommendations were and doing what she could with them. And she did make changes. And I worked with her for a long time for a variety of issues, but I eventually started giving her fewer things and keeping them more simple instead of trying to fix everything all at once. Even if it was just one piece of advice for home every 2 weeks, That was still something that was less overwhelming for her and it made it more possible for her to make her own change.
The second patient I'm thinking of is someone who, also it's unclear if she's been or her her physician hasn't clearly diagnosed her with endometriosis, but I would say she meets a lot of the criteria clinically and really looks like the picture of someone with endo. She just had a partial hysterectomy, after having several pregnancy losses in the attempt to become pregnant, and a lot of assistive reproduction reproductive technology.
She also deals with PTSD, post traumatic stress disorder, and has quite an extensive trauma history as well. She was very straightforward with this about me from the beginning, which was really helpful. And she knows her body very well, and she knows her triggers very well. But still someone that has that type of trauma, even touching her abdomen in the first exam, she didn't expect it, and she didn't know it was coming. But it really triggered her and reminded her a lot of her fertility treatments, which were extremely distressing for her. And she shut down and realized, oh, no. I didn't expect this to happen. So I've had to change my approach with the type of manual therapy we can do.
I'm not going to take out my real time ultrasound machine and use it to show her her abdominal muscles because that is gonna trigger her to remember her lost pregnancies. Even despite that, she's making leaps and bounds. She's doing I saw her twice before her hysterectomy. I've now been seeing her, I think, 4 weeks after, and she's now back to skiing. She's preparing to be go back to being a skiing instructor in the fall in in over Christmas. She's back to swimming. She's going back to the gym. So she's doing all sorts of amazing things for herself, and she's really accepting of the stuff that I'm sharing with her between me and another movement practitioner she's working with.
She's doing a lot of hard work. So there is hope, even for someone who's gone through a lot of heavy stuff to get better if they come in with an accepting mindset. So the moral of the story, I think, is no matter how screwed up, if you will, you think you are, there's never not an opportunity. If you're willing to put in the effort as a patient and you find a provider that is willing to work with you, change can happen.
Is there anything that I haven't asked? Because I don't live in your world that you're like, people need to know this. Is there anything that you're like, we gotta address this one piece here?
There were a couple that you already touched on, which was we touched on the pain science component, which is critical, And we also touched on the difference between people's symptoms and the severity of their disease state, which also really matters, is really critical. I think the one thing we didn't talk about was why are kegels the bad guy, or why are they demonized so much? And a quick step back, a kegel or a pelvic floor contraction. You can find information about it ad nauseam. It's everywhere now. You'll see it on social media. You'll see it. You You'll probably hear it in other episodes of other women's health podcasts. It's common.
But it's been traditionally in the pelvic pain space. It's kind of gotten a bad name. And I wanna take a second to demystify that because pelvic floor exercises themselves are not inherently bad. What has happened is that pelvic floor contractions have been overprescribed and not particularly introduced to people with any degree of nuance. The main issue is that when pelvic floor contractions were first invented, if you will, by an American obstetrician back in the fifties, he identified them as a way to help his postpartum patients who were leaking pee after having children or have her vaginal childbirth specifically. First of all, that's not normal. If you don't know that's norm not normal, there's a whole another rabbit hole there.
But he identified it for that population, and it helped them. For someone who has pelvic pain, a lot of times weakness or laxity or lack of activity in the pelvic floor is not their problem. Many times it's the opposite. They have too much or excessive tone and tension in their pelvic floor and sort of a protective contraction from all of the pain they experience. Going back to when we talked about referred pain and that idea of the alarm system, the pelvic floor muscles have become that angry, irritated neighbor. They can't sleep because the pelvic floor pain alarm is going off all the time. So they've become hypertonic, extra tense. K.
So if you take someone with extra tense muscles, say you squeeze your fist really, really hard as hard as you can. If you keep doing that for long enough, my hand's getting tired. This is starting to hurt. K? Now you want me to do that more? You want me to squeeze and squeeze and repeat and just keep doing that? Is that gonna help? Probably not. It might actually make your symptoms worse. However, that doesn't mean you should never ever use your pelvic floor or never ever contract it. What you might need is someone to help teach you, okay, here's how you activate these muscles, here's how you find them in your body because you can't see them, here's how you feel them, And now here's how we learn to control them, how to relax and stretch them and let them go to reduce that tension. And then how's here's how we retrain them to work, quote, unquote, normally again, how you can then use those muscles and activate them when you need them, like when you need to not pee your pants or when you need to jump in a workout and you don't wanna have your organs fall out from the inside.
That's a dramatization, but you get the picture. Re learning how to relax the muscles and then retrain them is a form of pelvic floor exercise, and it's very possible and non harmful for someone with pelvic pain. But if someone just tells you, ah, well, go home and do your kegels as a blanket fix for any pelvic problem, that ain't it. That's not the solution. So I think understanding that pelvic floor exercise is more than just a kegel, and that if it's taught properly, it can be very, very effective for all sorts of concerns, including chronic pain. I think that's a really valuable note to get out into the into the ether for people in this space.
What's exciting to you based on, you know, you're doing the medical writing and talking to a lot of different companies. And I'm just so curious from anything pelvic pain. What's coming in the near future that you're curious about or excited about?
I'm really excited about the potential for, telemedicine and telehealth to make a difference in this space, especially for folks in rural or underserved areas and for people who are uncomfortable attending medical appointments in person because of past trauma or gaslighting, what have you. So I think there's a lot of potential in that space. Also a lot of potential for harm if it's not performed properly and not executed properly, but it has a lot going for it. And the other area I'm really excited about is the upcoming research and there's more developing research in terms of biomarkers to help diagnose endometriosis and other public pain conditions because if we can diagnose them earlier then hopefully we can get people to treatment earlier. The earlier you're treated, usually, the easier it is to help. And there's also ongoing research into the vaginal microbiome, which is essentially the healthy bacteria that colonize the vaginal canal and other areas of our reproductive and, urologic tracts. But the the urologic and the gynecologic, by microbiomes have a lot of potential to change vaginal health and pelvic health in general, particularly for folks that develop pelvic pain from, chronic infections that they've had treated over and over unsuccessfully. That's a whole another area of the pelvic pain sphere but it is interconnected.
I think the more we start to understand this research on the microbiome and how we can better manage it and treat it, the better we'll be able to prevent people from developing chronic pain disorders because of those types of issues.
I've done a couple of, interviews on the vaginal microbiome, and, I never put that together about eventually women.
Caitlyn Tivy:
People that have had chronic, bacterial vaginosis or chronic UTIs, then develop a chronic pain condition. And even in males, people that have chronic prostatitis that stems from an infection initially and then they develop chronic pelvic pain, there's a lot there's a lot happening there that I think is gonna be really, profound and and groundbreaking as it becomes more well known.
I haven't looked at this lately, but I just have this question. Do they still sell douches?
They do.
Can we please get rid of them?
They are the worst. They are the worst. I wanna burn them down. They're, like, there are very select cases in which medical conditions require someone to use, things like an enema or or a douche in some cases, but the vast majority of the case use cases are for people to think that their vagina smells bad, and they are self conscious, and they are just washing away all the healthy bacteria that are supposed to be there. So, yeah, I'm with you. Let's burn them all down. Not here for them. They're they're dangerous, so don't buy a douche unless specifically instructed by a specialized medical provider.
There you go. You are clearly in the right field. Like, I love your very thorough scientific, you know, and thoughtful approach in explaining it. I actually would say, I don't know if you you're also a teacher. I I don't remember if you've mentioned that, but you're like a natural teacher. So great job. Thank you so much. I really appreciate your time.
Guest Bio
Caitlyn is a medical communicator with a deep commitment to inclusive health care, bridging the gap between complex scientific data and accessible information for all genders. Her journey began in biomedical research, transitioning to clinical care as a pelvic health physical therapist, where she gained insights into the effects of endometriosis and similar conditions. Since 2021, Caitlyn has been innovating in the femtech and startup sector, co-creating a virtual women's health program that tackles pelvic pain and urinary incontinence. As the president of C Tivy Consulting, she champions effective communication for health companies serving women, men, and the LGBTQIA community. Connect with Caitlyn on LinkedIn and her website to explore the intersection of health communication and technology.
Disclaimer
The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.
Comments