Episode 53: Hidden Hernias, Endometriosis, and Misdiagnoses in Pelvic Pain with Dr. Sallie Sarrel

I’m joined by Dr. Sally Sarrel to discuss the hidden layers of pelvic pain that often get dismissed, misdiagnosed, or misunderstood.

Dr Sallie Sarrel is a pelvic physical therapist and person with endometriosis. After diagnosis took 23 years of sheer frustration with the medical system, Sallie created a practice to be a safe haven for all with endometriosis and its associated disorders. 

Together with Dr Andrea Vidali, she founded The Endometriosis Summit to unite surgeons, patients, practitioners and caregivers to drive endometriosis forward. 

She has a passion for treating people with endometriosis with leg, bladder, and groin pain , Sallie gives voice to all who struggle with endometriosis and adenomyosis. Reminding the endometriosis community that you are worthy and together we can ignite change

We dig into:

• What an occult (aka hidden) hernia is, and why it’s often missed on imaging
• Why so many people with groin pain or endometriosis are told "it's your ovary"... when it’s not
• The role of the ilioinguinal and genitofemoral nerves in chronic pelvic pain
• How what we think are yeast infections, are nerve compression causing itching 
• Why your feet, fascia, and diaphragm might be contributing to your symptoms
• How misused medical language can tank a person’s healing and hope
• The role of thoracic mobility, gait, lymph, and nervous system regulation in long-term recovery
• How as pelvic floor physical therapists we have much more skillsets to help our patients besides internal treatments.

Whether you're a patient, a provider, or both, this episode brings truth, education, and advocacy in a way the pelvic health world desperately needs.

00:00 Introduction to TMI Talk with Dr. Mary

00:13 Meet Dr. Sally Rell: Pelvic Floor Specialist

01:06 Episode Overview: Topics on Pelvic Pain

03:14 Welcome to the Show, Dr. Sally Rell

03:42 Understanding Occult Hernias

07:24 Diagnosing Hidden Hernias

08:52 Physical Therapy Approaches for Pelvic Pain

14:35 The Role of the Diaphragm and Thoracic Mobility

18:11 Challenges in the Medical System

23:44 The Importance of Holistic Treatment

28:08 Hydration and Heart Rate Management

28:24 Empowering vs. Traumatic Diagnoses

28:55 Personal Experiences with POTS and Endometriosis

32:03 The Role of Fascia in Health

33:17 Endometriosis: A Surgical Disease

36:17 Diaphragmatic and Lung Endometriosis

41:33 Educating Healthcare Practitioners and Patients

47:29 The Future of AI in Medical Diagnosis

50:57 Conclusion and Contact Information

You can learn more about Sallie at https://salliesarrel.com

If you are interested in the endometrosis summit, you can learn more here 

If you are a health or movement professional and want to stay in touch with future episodes, webinars, courses, events and more. Subscribe to my email list here

I’ll see you in a week!

Transcript

0:00

Hello. Welcome back to TMI talk with Dr. Mary. I'm your host, Dr. Mary. In this episode, I brought on Dr. Sally Rell to talk about the hidden layers of pelvic pain that often get dismissed, misdiagnosed, or misunderstood. I. A little bit about Dr. Sally Rell. She is a pelvic floor physical therapist and a person with endometriosis. After it took 23 years of sheer frustration with the medical system, Sally created a practice to be a safe haven for all people with endometriosis and its associated disorders. Together with Dr. Andrea Vidali, she has founded the Endometriosis Summit to unite surgeons, patients, practitioners, and caregivers to help drive the endometriosis movement forward. She has a passion for treating people with endometriosis that also have leg bladder and groin pain. She also gives a voice to all who struggle with endometriosis and adenomyosis. She reminds the endometriosis community that you are worthy, and together you can ignite change. So in this episode, we're gonna dig into. What an occult hernia is and why it's often missed on imaging. Why so many people are told their groin pain or endometriosis, or just their ovary when it's not the role of the ileal, andal, and genital femoral nerves in chronic pelvic pain. We also address why we think something might be a yeast infection, when it could actually be nerve compression causing itching in the area. Why your feet, fascia, and diaphragm might be contributing to your, the pelvic floor symptoms or pelvic pain. Why misused medical language can negatively affect a patient's healing and their outlook on their prognosis. The role of the thoracic spine and mobility, gait and lymphatic system and nervous system regulation and how it all affects pelvic pain. And finally that be being a pelvic floor physical therapist doesn't necessarily mean we're one trick ponies and just using internal treatments for the entire session. We have such a vast skillset and the ability to help people with pelvic pain. So even if you're a. Physical therapist or chiropractor, or a movement professional, you can learn a lot from what we're gonna be talking about today because so much of our focus is not on the internal treatments, but more about looking at the person as a whole. So without further ado, we'll jump into this episode. Welcome back to TMI talk with Dr. Mary where we dive into non-traditional forms of health that were once labeled as taboo or dismissed as Woo. I'm your host, Dr. Mary. I'm an orthopedic and pelvic floor physical therapist who helps health. Movement and rehab professionals integrate whole body healing by blending the nervous system into traditional biomechanics to maximize patient outcomes. I use a non-traditional approach that has helped thousands of people address the deeper roots of health that often get overlooked in conventional western training. And now we are gonna be starting our next episode.

Audio Only - All Participants: 3:13

Welcome to the show, Sally. I'm excited to chat with you. It's so nice to be here. Thank you for having me, Mary. Even though we were just chatting for 30 minutes before. Well, who knew? I found like, uh, a missing piece of me over there in Texas. Yeah. Oh my gosh. I feel like we could talk for hours, especially with Heather too. I mean, the three of you. Well, Heather's the best. Y'all are great. Um, okay, well, we'll just go ahead and jump right in and, uh, yeah. So from your clinical lens, what patterns or patient presentations make you consider an occult hernia? Even if I imaging comes back clear, I. The biggest pet peeve I have in anyone with pelvic pain or endometriosis is when they take their finger and they point to their pelvis where they think their ovary is and it isn't really their ovary, and then because they think it's their ovary, they go to the gynecologist. And the gynecologist has no idea what a nerve or what a vein or what fascia is and goes, must be your ovary. I don't see a cyst, so we'll just take out the ovary. And to me that is a frustrating situation because there is a series of nerves there, but the biggest nerve in particular is the ileal inguinal nerve. And um, that is going to cause that lower quadrant. Pelvic pain that, um, radiates sometimes into your pubic bone, which means it's accessing a different nerve, the genital branch of the genital femoral nerve, and then down into your leg and thigh, and sometimes even you'll get some pain into the inside of your knee. And those are presentations, in my opinion, that should be looked into for occult hernia. What is AOC Cult hernia? Is that your next question, Mary? Yes. Explain to everybody what cul hernia is. So I really, uh, changed the name to Hidden Hernia. Um, but, and AOC Cult Hernia is not necessarily a full blown hole through the peritoneum, like a normal, everyday more common. Hernia is, it is more likely to be a, um, compression of fat. Not fat like your fat, but fat that is native to the body that's found in, um, sometimes what's the pre peritoneal space or found sometimes in the inguinal canal and it's laying against. Um, this nerve really creating, um, pain along the, um, nerves, the ileal andal nerve, and often the genital branch of the genital femoral nerve. And that particular type of hernia is not often spotted on MRI or CAT scan because more often than not. The radiologist is trained to look for the full-blown hole and is not necessarily looking for the fat compression to the nerve. And so what happens is people will do things like, I had the ovary out, I. And I still have the pain. Yeah. And now you don't have an ovary and you could go into menopause early and early. Menopause is connected with things like Alzheimer's and stroke and heart disease. So I wish we had treated the, um, real cause of the problem. Or they'll say, um, that they have this pain and, um, nothing has helped it. Uh, and yet scans are negative. And some, some people will even say that they've had laparoscopy for endometriosis and nobody saw anything, be it endometriosis. Or a hernia. And that's because the hernia is not viewable at the same time typically, unless you are specifically looking in this area of the body as, um, when you do the endometriosis surgery. So what would be the typical way for them to diagnose it? Um, it is very possible to see a hidden hernia on MRI or CAT scan. If you are reading it right now, here becomes the problem. I really only trust two people in the United States to read them. Um, luckily both of these people do, um, virtual reads. Um, and I think the other problem is. That not everyone will operate on them either, so that's why I send people to specialists. Actually, I would say there's three specialists that I would send to, but like think of how many people are in the US that have this pain. Think of how many people you talk to on a daily basis that go, my ovary hurts and really. We're not paying enough attention to the nerve that lays in the space that people think is their ovary. Now, will the hernia hurt during menstruation and during ovulation? You betcha. Because there's inflammation in the area, so people will go. Oh, when I ovulate, it's terrible. Must be a cyst. Must be endometriosis. No, you very much can have dysfunction to this nerve. Um, that hurts during ovulation, and that hurts during menstruation. That is not related to either ovulation or menstruation. But even like from a physical therapy perspective, a rehab perspective, I mean genitofemoral. And then in that area, you're gonna get referral from like T 12 to L two. Uh, say somebody doesn't wanna have surgery or maybe they don't have access to the people that you're talking about, you know, we're both PTs, so you would Right, right. Like, what are you thinking from that standpoint? I. I start with the spine just like, because we established on the part of the phone call that wasn't recorded, that we, um, somehow belong together in this world. So, but I start with the spine and I think about where do these nerves originate, right? And so if you can, of course you can look at T 12 really to about L four to cover, um. Both the, um, general branch of the general femoral nerve, but also to cover the i inguinal nerve. And then I think because the ileal inguinal nerve wraps around, there's a lot of myofascial work that can be done on the external and internal obliques and, um, on in some ways range of motion itself, uh, in rotation. Um, but here's my other issue and I have seen techniques to, um, floss those nerves. And basically, um, you look at the way the nerve runs, you can open any anatomy book that you have and you move the person in the direction of the nerves and then you can gently like, sway them. I usually go, um, directly in the direction of the nerve versus not. Going in the opposite direction.'cause that's like breaking down a barrier. But the other piece is for many, myself included, because I had one of these. All those techniques in the world may not be helpful, and some people do have to manage, um, the hidden hernia by removing the nerve compression. And if you're in that population and you choose to go through that surgery, it can change your life. Immeasurably because you've never probably realized how much that pain affected you. Um, it's just like, you know, endometriosis. Um, most people who have an endometriosis, who never had an excision don't realize how much their life changes when they have an excision because they don't realize how much, um, they're being held back. But the other thing is, if you're dealing with groin pain in it and someone with endometriosis, especially on the right, on the right, you have to also remove the appendix because so many people, even without it visible at the time of surgery, have groin pain from. The appendix. But if you also have the hernia on top of that, then you really have groin pain. And so you play this game of like, well, what do I do first? So like most of the time we have people, like if you have endometriosis and you have one of these, um, one of these hidden hernias. We do the excision first and then, and then we see. Because if you take down all the inflammation from the endometriosis, maybe I have, um, I have techniques direct to the ileal inguinal nerve itself. That's like a myofascial, like strumming almost. But it's not really strumming'cause it's not. Aggressive where you're working along the nerve on somebody's abdomen. You're, the other thing is it can be very helpful if you dry a needle. You may be able to dry needle that area. You may be able also to, um, manage it. I work with people who sometimes can do, not necessarily a steroid injection, but um, they do a tial injection, which is a. Um, herbal anti-inflammatory directly into the nerve as well. Um, and that may be enough without having surgery, but if your patients choose to have those nerve injections, they should see you like within the next. Um, within the next 24 hours because then you can really go to town on the spine, the hip, the sacrum, and I really believe even the foot.'cause if you're really, um, prone pronating Yeah. And everything with your ankles, then you're pulling at your pelvis to ruin your adductors So much I. I cannot believe how much we don't look at the feet with the pelvis. It is astronomical how, I mean, it's, it's not astronomical, that's not the right word, but it's just astonishing how little we look at the feet, or at least what I've seen, um, in my experience. In, in the pelvic health community is just only focusing just on the pelvis. Like it's, it's treating the area, like you said, just kind of locally. The way I explain it is we treat locally, treat the pain, treat the source of the pain, but then you treat the Y. Is it the foot pronating that's making it worse? Is it that we're not getting thoracic rotation because maybe we're not pushing off during gait because we're walking in a different pattern. Maybe we altered our gait because of an injury five years ago, or something along those lines is. All of this trickling up and, you know,

mary: 14:07

thoracic rotation is one of the most missed things that I see

Audio Only - All Participants: 14:10

in the, in,

mary: 14:11

in pelvic health

Audio Only - All Participants: 14:12

because

mary: 14:14

if we're not getting that thoracic rotation, a lot of times it's'cause we're rigid. We're in this fight or flight, we're trying to run as fast as we can to go somewhere, and we're just go, go, go, go, go. We're not breathing through our diaphragm. Which then affects our lymphatic system. Now add lymphatic system to the pelvis. Now add on constipation. Now you've got a cluster of shit all hanging out there. Well, think about the diaphragm in a number of ways, especially with our pelvic pain population. First of all. Our pelvic pain peeps oftentimes are hunched over a little bit, or they're guarding their pain. What's the, and their muscle they're gonna guard with unfortunately, is their diaphragm. They're gonna use their diaphragm as a postural mu muscle, and then. Um, that it's not going to work the way it should, which is gonna change, um, thoracic rotation. But Mary, think about something else. When they do surgery on, you suppose that somebody's had multiple surgeries. Um, when you have anesthesia, it changes the way the diaphragm works because it has to. Right? But for endometriosis surgery, they tip you back. Because they have to insufflate the belly with, um, gas so that the organs fall away from, um, the abdominal wall and such so that they can really search for endometriosis. So they tilt back like their pelvis is up and then their right upper.

Audio Only - All Participants: 15:37

Right now. Okay. If, if they're doing specifically, which I was gonna get to in the next sentence, but if they're doing specifically diaphragmatic endometriosis, they tip you the other way because then you Right. Okay. But hold please. On the diaphragmatic endometriosis. When they tip you back in many patients, that's going to change the way our excursion is. When we wake up from, you know, things that you need physical therapy for, that's going to change thoracic mobility. Then, uh, when you have surgery, you don't like to take a deep breath in or turn side to side because it hurts like hell, and that changes the way your brain connects to your thoracic spine. So you're missing that a little bit. And then the real issue becomes. What about, um, diaphragmatic and um, lung endometriosis and how is that fully impacting the system as well as, um, what is the role of the vagus nerve in all this? So you have all that with the thoracic mobility and then with the foot. I see that all the time because I do groin and hip pain in relation to, um, pelvic pain and endometriosis and. The person goes in to your office and maybe you've gone outside to wash your hands, like my sink was in another room, so I would go outside to wash my hands. When I came back, the person would already be on the table, usually whether I ask them to or not, and then they're lying down. So a lot of people don't realize. That it starts from the ground up and I need to start the physical therapy session. I gotta look at, um, the way your, um, feet are working. I gotta look at the way your hips are working. I have to look at how your sternum is moving when you're in standing. And of course your head and neck. And so there, and, and if you talk about fascial lines, then we really gotta talk about the feet and thoracic rotation. So. Lots of issues and, and then I had the privilege of being a non-insurance taker, and so if I wanted to look at somebody's foot, that's no problem because I don't care what the code says. If you are in a big clinic and your code says pelvis, sometimes it's very hard for them to stand up a patient and start working on the foot or the ankle or the calf, right? Lots of fascia in the calf. And I think, you know, we have challenges in the way our, um, medical system is see issue, fix issue. When it's not fix issue, it's treat whole person. Well, I worked in Nsurance model for seven years and I still treated like whole body. I would just justify it in the note. And so how much of it is that we're not justifying it in the note because, and I don't remember having any issues with billing. Once I justified it in the note and being like, Hey, as they do this, he'll, you know, their lack of push off during gait. So it's limiting their, you know, their pelvis from rotating. So thoracic spines being limited. So I also feel like there's a piece of, yeah, insurance can say that, but if you're justifying it in the note, why is that an issue? And I was in that for seven years and I did that. I think it's gotten a lot. Dicier has it. I mean, I've been out now seven years outside of, I think we've. Look, I, I am not someone who was rah rah insurance, but we shot ourselves in the foot as a profession when we allowed an insurance company to determine our worth and our worth when we treat the whole person. Is that documentation that you're talking about that you see a change in heel off that's affecting the pelvis and thoracic rotation? We are trained for that. And unfortunately in many states, and it differs from state to state, the insurance company is dictating what you can do rather than the training that you have. Now, the other thing is how many of our PTs listening are in states where the PT is only doing the eval and the PTA has to. Execute everything, and I believe that every single day, every single session you see a pelvic pain, endometriosis, or even groin pain patient. Every session is different because there's an element of eval for everything, but that's because I'm a pt and I think a lot of our PTAs are very challenged by that also, that the system is very hard for them. Well, I think that that goes back to, you know, what we were talking about earlier, like looking all the way up the chain is, well, why are we so separated? I, I feel like our industry needs to step up. I mean, I think it's, it's hard because the industry is dictating, right? So then if you're coming out as a new grad and you're told, Hey, only treat the pelvis, you're only gonna treat the pelvis and you're gonna think just like this in this. Small, narrow lens. Now that affects the quality of physical therapy across the board. What I have seen even in cash practices here in Austin, that people do internal treatments for the hour. For the whole hour. Can you imagine? No, this is not, I mean, I have pelvic pain, endometriosis and hernias, and I could not do an hour. I mean, I physically could not endure that. No, they're literally like, it's literally like, it's, it's something where it's like a majority of the session is internal. This has been normalized. This is really messed up because I also believe that, and, and our people out there listening should understand that pelvic PT does not always mean sticking your finger inside someone. That the internal is one tool in the toolbox, but there's 500 things. Plus in that toolbox. And we are not always doing internal work. And there are people who can't tolerate internal work at all. And we doing tons of progress. And I think the pandemic taught us that because we were treating people, um, virtually well, I've also had it too, where people, they go in and they're getting treated internally for that whole time, but nobody looked at this tissue, the skin, and it was a dermatological issue. Yeah. Was it pH I find that also, you know, our topic was supposed to be groin pain, but I mean, it all goes together. It goes together because I'm right. I find that in the, um, in the missed hernia realm because people think that anything vulvar is pudendal. It's all, oh yeah. It's pudendal. And they don't realize, and I used to take out, um, I used to map the nerve. Right. And there's a portion of the labia that's ilioinguinal and the, what's the portion of the pubic bone? That's genital femoral and, and people don't realize, like, first of all, they think they itch. It has to be yeast. No. If you sit on your foot for a long time and your foot falls asleep, the pins and needles can be interpreted as itching. So if you have a nerve compression in your pelvis. That's the itching. So stop taking the yeast infection medication unless you swab for it each time, because that's an indication that there's a nerve issue. Also, when they say burning, I'm like, yeah, that's not your urine. That's, I mean, unless they have an active infection. But after ruling that out. That a lot of times is a nerve issue and then like it's not all pudendal. And we of course could have the conversation of just because the script 15 years ago said pudendal neuralgia'cause the doctor didn't know what to write on the script. Does not mean you have to live your life in the box, that you could only have this one thing. And that's what I find I see with the people with endometriosis is you have endometriosis, you've had a horrendous time being diagnosed with endometriosis, but endometriosis also comes with like 18 other things, and we can't only think of you as a person with endometriosis. We have to think of you as a whole person. Who needs all those things attended to from mental health to diet, to pelvic and occupational physical therapy, we have to start treating you and treating everything instead of you just going because they have endometriosis.'cause like your lower quadrant pain may not even be related to your endometriosis and you don't have to have that pain and groin pain to move forward in your life. Well, I also think that you just tapped on something. It's like the language that we're using with patients because, oh my gosh. The amount of stuff that we have to be so careful when we're talking about people's bodies because, you know, I just had somebody the other day come in their, their practitioner told them they have a spine of an 80-year-old. You know, and so then people hold that in their head forever. Forever. Well, Jason sure has a whole lecture on that. We did it at the Endo Summit, but we call it words Matter. But yeah, the other thing I hate is people go to me. Oh, I had an MRI. You should see what my spine showed on MRI. I don't. I mean, I don't wanna say it like totally, but I don't really give a fuck what the MRI showed. If you're gonna show, oh, I have a bulging disc, like a bulging disc is another box for you to go sit in, because I would say 80% of the time that bulging disc is not. Um, the stop point for your issues. And also we know now the things that you see in that MRI tube, um, in regards to your spine. I'm not talking about everywhere else, I'm just talking about the spine. Don't necessarily, there are not such a big component of your pain. Oh, I'm bone on bone. Guess what? I'm bone on bone. L five S one. I don't have any back pain because I have great mobility of the rest of my spine. I make sure I'm strong in my core. I make, and core, by the way, also includes the diaphragm. It also includes in some ways the ribs and the scalings. Right? It's not, and and I think to we're. Especially when you have complex issues, you are pushed so far that any little in information that you get becomes something to grab onto. And we don't want you, um, to only define what's going on by that. Well, I think, you know, if we're talking to practitioners and it's, and you hear patients saying, well, I have endo, or I have this, or like identifying with it, that is a yellow flag to help that patient maybe reframe also how they are, they're speaking because. That's then you're limiting yourself from everything. I know that I've had it where before I was diagnosed with Endo and I was going through all these different things about chronic fatigue and nobody knew what was going on. And you know, like you said, endo comes with a bunch of other diagnoses, which you're already thinking you're crazy'cause you've got all these other things going on too. And in that, just being aware of, if I, when I stayed in the victim mentality of, oh no, I can't do these things because I'm in pain, or like I have this disease or I have this, then you limit the rest of your life and it almost perpetuates the chronic pain.'cause then your nervous system is on more high alert because you're not doing anything, but you're dwelling on the pain itself. So there's this balance between recognizing and respecting, Hey, I have this, but also I am a human and it's not my identity. Right. I, and I also think like diagnosis. Like you were saying, depending on how it's presented to the person, right, can be very empowering. So for example, I have pots and so for years I wanted to know why my heart rate was high. Am I just like a fatty on the tennis court?'cause my heart rate is so high yet? I'm pretty well trained, cardiovascularly, and knowing that I had POTS was not like, okay, uh, this is why I can't achieve I have pots. It was, this is why I have to hydrate the night before. This is why I need salt in the water, and this is why it's okay to say to the person next to me, we're gonna take. Like bounce that ball a lot between points because I have to let my heart rate drop. And so there's a way when you're a medical practitioner to present diagnosis, that's empowering. And then there's a way that presents it where it's, uh. Traumatic for your central nervous system. And it'll be interesting to see how, um, as we move forward with lots of work on our central nervous system and, and work in the research on that, how, how that may change. Yeah, it's, it's, it's really hard when somebody's so connected to their diagnosis because. You are not your diagnosis. It's, it's a part of you. And it's, it's interesting too. It's like I've had, I had pot, a really bad spell of pots when I was 18 after mono. And that's kind of when everything kind of Me too. Yours was too, yeah. That's what triggered it all. Yeah, I had, I couldn't get out of, I could hardly get outta bed for a year in my first year of college or like that last nine months of college. Didn't know what was going on. Um, I was told to just push myself harder, so I tried to exercise and I'd flare up, developed, um, what is it? Uh, post exertional malaise was told that I was crazy basically. And it's not until like the last couple years I was like, oh my God, I had pots. And I think it's still like lingering. It's not to the degree that it was, but it's fascinating to right. I also how endometriosis interplays with the nerves and the veins and the arteries in your pelvis. And in my case, that was very, very significant. We didn't know that until I was 35, but that changed. I. A lot on how my pelvis worked. And um, I think the role of that, and if you're, you have frozen pelvis, we really can't tell if it's just, um, a venous issue or if the venous issue actually has an obstructive nature from the frozen pelvis. But it's so interesting that an, an insult lake mono. Might be the trigger for so many people because these things are there our whole lives. But then I think they get triggered, you know, well, if, think about it. Endometriosis is laid down when you're in utero and then becomes hormonally reactive. If you go through, if I went through my history, for sure, I had it in my teens, and then like the doctor minimizes you until you normalize it and then you end up like being so ill that you have 9 million other disorders. I think that's usually what happens with endometriosis. This is the first time I've court like I. I mean, it makes sense why pots and endo would go together. I don't know why I hadn't. Yeah, we, we have to explore that more at the endometriosis summit. We had, um, Dr. Brooke Spencer this year, we're looking towards having her, um, next year as well. And I, I think, um. We don't really un, you know, blood volumes changed in someone with pots also. And, and I just, I don't know, you know, correlation is not causation and we all know that, but is it that, um, the frozen pelvis is making a bad situation worse? Um, and how about for those of us with diaphragmatic endometriosis? That for sure is changing your venous system. Um, and I think. It makes a bad situation worse rather than, it's a huge, um, component of it now. Can we say like, what is the role of connective tissue and fascia in general? I don't think we just, we just don't know yet. We're just not there. Fascia's just so evolving. I mean, the more I'm like trying to stay on top of it, it's just they're finding new cells now and it's just interacting so much differently than we thought even just years ago. And so I'm, I think I'm excited for. You know, you and I are talking, I'm going to the Fascia Conference, but diving more into fascia and just staying on top of the research with it, because if your fascia's restricted, then your lymphatic system's gonna be restricted, and then you're gonna get more compression in your pelvis, and then when you get more compression in your pelvis, I. Can put more pressure on the nerves, add on constipation on top of this, right? You've got all of these different things. So it's so multifaceted. It's not like just nervous system. Well, okay, yeah, just nervous system. But now the nervous system interacts with fascia. It's going to restrict the fascia. Now the lymph can't flow, but if your nervous system is restricted, then your peristalsis and your gut's gonna slow down. So that's gonna, it's just like. You know, now we have to think about what's going on inside the gut and what, what's the role of the, the microbiome and the immune component in the microbiome as well. There's just a lot, a lot to think about, but I think, and I think like, so endometriosis is a surgical disease. I don't care what anyone says. You wanna try using birth control to modulate symptoms, fine, go ahead. But it is, but you should know it's a surgical disease. So while it's a surgical disease. All these other things are not necessarily a surgical disease, and you may never get to that point on the road where you feel amazing and awesome. If we don't start to take each layer down individually, because just treating one piece and not treating the fascia, not treating the pelvic floor, not treating the hernia. If you need to not restoring mobility to the spine, hey, not maybe you need to be really looking at those feet like. Not doing all these things is, is not, you may have excised the endometriosis, but you're not gonna really, um, have the person feel great in where they are on their journey. Well, yeah.'cause it's, they're, if their pelvic floor and their fasc is restricted from the chronic pain, you remove the endo and they still have pain, of course they're still gonna have pain because too many just go back for more surgery. Yeah. Well, that's my question then too is, you know, you're saying, well. Um, hey, you know, it's a, a surgical disease, but also at what point will you just keep going in for surgery over and over, you know? I mean, there's that too because I, first of all, I typically only work. With excision, I don't do, and this is a whole podcast in itself, but ablation for endometriosis where they burn off the top of the disease and leave the rest of the disease behind is ineffective. And so if you've had an excision where you've taken the disease out at its root, can it recur? Yes. Recurrence rates are lower, but it can recur, but. Once you've done that good excision, it's time to start, um, unlayering the onion as we talk about instead of like, I have excision, I have pain, uh, I'll do more excision. I'll do and because. That we can't, it can't be an, a never ending, um, cycle. So like, I have excision, but I still have ovary pain. Right. Even though I don't ev I don't usually think that's your ovary. It's always the nerve. And it doesn't mean like, so your second excision go in and take out the ovary. It means like. Spend some time to, to do some of these things that we are talking about. Are there people that need to go back for surgery? Yes. Is it, is it something you should be doing every two years? Probably not. Probably not. Does it happen? Yes. I totally have patients that do everything they can, and I think that's where this concept that there may be different phenotype of endometriosis, that's where we really need. Better research to, to explore that. Well, if somebody hasn't heard of the endometriosis and the diaphragm, can you explain that? Because not everybody that's listening is super familiar with Endo. I did do a podcast with Heather, so we did talk about excision versus, um, ablation. Now you and I know are by our first name, but Heather Guidon is really the, oh, sorry. Random of all things endometriosis. Um, and she's part of the Center for Endometriosis Care in Atlanta, but diaphragmatic endometriosis, first of all, I'm sure, um, in that podcast you discussed that endometriosis doesn't spread endometriosis, um, is laid down when you're in utero and then becomes reactive so you can get. Endometriosis, um, on the, what I call the diaphragm side of the diaphragm, um, as well as diaphragmatic endometriosis on the lung side and in, in the lung. And by the way, I don't think it's particularly, um, rare. There's a great organization by Wendy Bingham, who is a pt, um, extra pelvic, not rare, long, and diaphragmatic endometriosis are, um, not rare at all, and they're s. There. Very misdiagnosed because, um, even with the advanced imaging techniques of pelvic mapping, they are not easily seeable on all, um, scans and, uh, or any scans. And most decent excision will. Um, when they go in to do a laparoscopy, they will immediately go and check the diaphragm. That's how common endometriosis is on the diaphragm, and also how common it is missed. It's missed so often that now we have to build it into the surgical plan automatically. Well, what do they do if it's on the lungs though? If it's on the lungs, and, and I would refer you, um, to, Heather's pretty good with this, or Wendy Bing. I'm pretty good with this. If it's on the lungs, they do, um, a vat where they're putting a different hole into the side, uh, of your rib cage and going into your lung. They deflate one lung and they take the endometriosis off during surgery. Yes, we, we do. Um, Dr. Vidali does that. Dr. Cvo is known for that. Um, there's lots of doctors doing vats for lung endometriosis. Um, now I had. Good story. I had some, um, suspected lung endometriosis, and I, at those time, at that time, this is, um, at least more than 12 years ago, I chose to leave it because the techniques weren't advanced enough. That the doctor, the thoracic surgeon doing it couldn't guarantee me I wasn't gonna experience a collapse just from having the surgery when I worked out. But the techniques have advanced a lot more. Um, and it's, um, uh, that particular surgery is something, um, that there are a lot better results with now. But that one would probably almost be like a last resort, right? Oh, I don't think so. If you are, we have great diaphragmatic and um, lung endometriosis videos on the endometriosis summit. YouTube really in depth, um, if you wanna learn about them. But if you are somebody who has, um, a history of. Lung collapse, particularly during menstruation, but it doesn't have to be during menstruation. Um, shortness of breath, difficulty taking a deep breath. And there is any correlation with your period. It's definitely worth being looked up for, uh, worked up for lung endometriosis and my experience is. That people who are symptomatic from the lung endometriosis, unfortunately I couldn't never make that great a headway as a physical therapist. It is something that, um, people do have to go and go through the vats if they're really symptomatic from it. Hmm. I, I now, then afterwards, there's a lot of work to the rib cage and there's a lot of work to the sternum and there's a lot of manual work, and there's all these exercises I do with the sheet. And then yes, there's, there's a role for PT in lung endometriosis, but if you're truly symptomatic, I never made any headway. With any physical therapy or by sending, I used to have a great acupuncturist who I would send people to also, he never made any headway. And I, the long endometriosis crowd, um, we try to, um, refer through to vats to somebody that's doing it all the time. You don't want that guy who's like, well, I could drive. Sure. I think it sounds good. Yeah. Well, I, I just, gosh, I just think of. Are, are you all working to get this information into, into physical therapy schools and medical schools? I mean, I, I saw wonderful. Amazing. I see Shannon Cohen, who is of course the producer and director of Below the Belt, and I see that she has connected with the, um. Uh, a PTA and she's doing a showing of below the belt, which below the belt is this, um, groundbreaking film on endometriosis. Um, that has, has really become an amazing, um, talking point and educational tool. And so I see her. Broadcasting to the A PTA and I think that that's amazing. I own the Endometriosis summit, um, and we are three days of endometriosis education for surgeons, patients, physical therapists, caregivers, and any practitioners. We have a lot of mental health providers also, and we did offer PT CEU this year. Um, and. We work hard. I I, I mean, I, you're probably the same way, like you call me, I come and I've done many a lecture in, um, PT schools, especially by, um, zoom and I think I. There's a lot of reasons why, um, now is the time for change because a lot of change no longer is gonna come through the federal government, but change is gonna come from the people, um, themselves and maybe from independent funding. But, um, you. We have to keep working at it. Um, and so many people that have endo don't know they have endo. Like that's the thing too, is that's a whole nother animal, you know? Well, you should have, um, you, there's, um. Radiologist who started her own radiological society just for endometriosis diagnosis. Wendy Van Buren, she's, she would be a, a great guest to talk about that. But the other thing is silent. There's also silent endometriosis. You can have. No symptoms. I don't believe it's no symptoms. I just believe no one is, um, correlating, really correlating and listening to the way your symptoms are. Like, I hate, so endometriosis causes a ton of bladder symptoms and I hate when somebody gets on the phone with me for a consult and they're like, yeah, I had like. Three years of infertility and then I've had a miscarriage and I can't get any eggs out. And my first question is, and what are your, you know, do you go to the bathroom a lot? And she's like, oh, but I drink a lot of water. I do not wanna hear that your urgency and your frequency is'cause you're drinking a lot of water. Because if you are having all these fertility issues and then you're telling me about urgency and frequency. That goes together or like, or, or you'll say like, are you bloated And, oh, only if I am not being perfect about my diet. By the way, you shouldn't have to be perfect. I mean, don't sit around with, um, drinking diet Cokes and eating twizzlerss, but you shouldn't have to be perfect with your diet not to have painful bloating. Well, no, I think that's the thing too, is symptom of endometriosis. Well, you can easily, and this is something I've done, I've just shamed myself when my periods are bad,'cause I, oh man, I shouldn't have eaten that cupcake. It's like everybody else can eat a cupcake and they're fine, you know? And they're not having these symptoms. But I think the thing that frustrates me is there's just. Even in Texas is, you know, people can get imaging and then, okay, so then they go in for a laparoscopic, but there, I have so many people, it's like, well, where do we send them? You know? I mean, also imaging is notoriously inaccurate for endometriosis. I know there are a lot of advances, um, and pelvic mapping and imaging. But, and the other thing is. Laparoscopy, you could have no idea what you're really looking for. Yeah. And miss, I see people every week that have had negative laparoscopies. And then if I cut, if our clinic cuts them open, they have a ton of, of endometriosis, so like. That's where, first of all, podcasts like this, where you let people be honest matters, but that's where people like Heather and people like myself and people like Shannon and, and, and, um, the advocates who are using their voices to go direct. To the people. Nancy Peterson, Kate Boyce of Endo Girls blog, gener, uh, you know, they're, these are people who are using, um, their voices on big platforms to go direct to the, um, I don't wanna say consumer, direct to the person because we can't rely on the md, right? They're, they're busy telling us to lose weight, or did we try going gluten free? And or wanna dairy, dairy free, wanna sell with IVF and maybe you don't even need the IVF. Maybe you just need the endometriosis, fully excised, and we have to do a better job at getting out there. And then the support will come from one day from, from everybody. That's like that endometriosis summit, that's its cornerstone is like, we can't wait for you to educate us. We're gonna do it. Ourselves. Well, my biggest thing is I feel like, uh, for the people, like yes, if we're talking to healthcare practitioners and movement professionals here, but in general, people need to understand their bodies so. The more the people can educate themselves. So you know, I'll tell my patients, I'll show them, Hey, this is likely what's happening. Your pelvis moves this way. This is what your lymphatic system does. So instead of just telling people what to do, we need to be educating them on why these things potentially are happening. So then they can start going down their own rabbit hole and starting to do their research. And I really think AI is actually gonna help with this. Too.'cause people are gonna start putting their symptoms in to chat GPT and being like, what is this? You know? And then with all the stuff you're popping out, and I'm not saying everybody needs to go to chat, right? But then here's the thing, my, my friend is. Has 9,000,001 symptoms plus endometriosis. So she put exactly some symptoms into chat, GPT, and she also has Sally at her disposal, right? So I'm like, what about this and what about this and what, and I, and I serve at this time during my consultations as a sleuth, like a chronic disease, sleuth sort of. And um, what she learned from TikTok. Was that she shouldn't go into the doctor and say, Hey, do you think I have Hashimoto's? Or do you think I have pots? But she should go into the doctor and pretend that she knows nothing about what's wrong with her. And she never heard of chat GPT in the first place. And lo and behold, 10 doctor's appointments of not being heard, but the one she goes into, and she's like. Oh, how does the thyroid work? Oh, does that make you tired? Like she doesn't know all that. Meanwhile, she's head of a, like a medical marketing company. She's not a stupid person, but like. Like, you have to sort of like fake it and pretend like you're not this active, engaged patient. That's the appointment she actually got help in. And, and, and that still exists in many ways. It is slowly changing in women's healthcare, but like, I personally feel like women's health. I've talked to people in the last week, they have to bring their husband or nobody listens to them. Like, it, it, yeah. I mean it's, it's, it's 2025. We shouldn't. And, and, and it shouldn't still be like that, you know? But it is, it is. It's so, it's like, okay. And I'm not saying chat GPT is the only ai. I just think as AI starts evolving, especially with imaging and things like that, I'm just really interested to see where all of this is headed. Well, I'm interested to see, um, there are some doctors working with, um, AI diagnosis. Of imaging and endometriosis. Mm-hmm. Um, and, and also of the hidden hernias, which is how we started here. And they're taking like thousands of MRIs that are properly read by specialist, by people who know how to pelvic map and plug them into these programs to get, um, better maps, particularly for surgery. And I'm interested to see what the next 10 years of that is because. A radiologist can, there's no fault to them. They can only look for what they're trained to look for. And could we, are we able to train the AI maybe a little better? Oh yeah, totally. I think so. And it's just, it's just from understanding those learned language models and how it works, it's just so much just pumping the data and it's just gonna take so much data for it to start to learn. But. Yeah, it's gonna be crazy. I'm ex, I mean, I'm looking forward to it. I know everybody's scared of ai. A lot of people are. I'm like, I think it's great. And I think the more best psychotherapist I ever had was ai. I know. I'm like, chat GPT. Are you like my, my partner now? Do I even need to be dating? Well. Not ready for an AI boyfriend, but not to that point. Not to that. Um, but thank you so much for being on. If people, I, I'll put the endometriosis summit, um, on the podcast here. Is there anywhere else you'd like them to follow you or reach out? Uh, they could. Find us on Instagram at Endometriosis Summit and we'd love you to join us in Orlando. I know it's far away, but March 27, 28, 29, 20 26. And that is also held virtually. Um, and@theendometriosissummit.com you can always join the mailing list and we'll see you there. Perfect. Well, thank you so much. Take care.

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Thank you so much for listening to my podcast. It would be a huge help if you could subscribe and rate the podcast. It helps us reach more people and make a bigger impact. I would also love it if you could join my email list, which is LinkedIn, the caption for podcast updates, upcoming offers and events. You can also find me on TikTok, YouTube and Instagram at Dr. Mary pt. Thanks again.