Uncovering The Hidden Culprits Behind Pelvic Pain: A Deep Dive With Sallie Sarrel

Speaker 1:
0:03

Welcome to Endo Battery, where we are sharing our endometriosis journey and learning along the way. This podcast is in no way meant to diagnose or give medical advice, but a place where you can gain knowledge and information that can help you to not feel alone, as well as become your best advocate. We want to learn with you and support you wherever you are in your journey. Thanks for joining us as we navigate the ups and downs and share stories of strength, resilience and hope. Come with us as we dive deep into the world of endometriosis, from personal experiences to expert insights. This is Endo Battery charging our life when Endo drains us. Welcome back to Endo Battery.

Speaker 1:
0:42

Today we are joined once again by high demand by Dr Sally Sorrell, who has enlightened us already once in one episode, and if you haven't heard that episode, then you need to go back and listen to it, because I'm also joined by Inga, who is she was highly invested in that episode and was like Alana, you need to have Sally back, we have more questions. We got to talk about a lot more. So Inga approached me actually and was like can you please have Sally back on here? I have more questions. And I said, well, why don't you just join me. Why don't you just come, inga? And she said okay. So she took the day off work. Oh, she did. She's committed, good to know, committed. She canceled appointments, took the day off work and was like I'm going to be there because I have so many questions on this, because you listened to that last episode.

Speaker 2:
1:35

It did like six times Sally, and the first time I was driving down the road and it hit home for me because I've been dealing with sciatica for like since March and then, sort of exactly like you were talking about in your last podcast, I had the imaging done of my back. We found three herniated discs L3, L4, L5. And it was like, okay, this is the source of your problem. I've had some injections. It's helped nothing. And I actually went back to the pain management doc who was doing the injections and I said what are your thoughts on? Could this be from my pelvis? Because I was literally listening to your podcast right before I walked in and he said really, I really do. I feel like at this point, with no relief after everything that we've done, I actually do.

Speaker 2:
2:29

And I guess his daughter or daughter-in-law has a pretty long history of dealing with endo, is also a doctor of PT, and he's like let's start looking at your pelvis. And I just thought is this the next endo? And you were talking about the fat hernia specifically. Is what I was like what is this? And just really wanted to kind of dive into that a little bit more and for you to share your insights, because up until listening to that podcast, I had never heard of this, so welcome to both of you Yay.

Speaker 3:
3:06

I'm so excited. Welcome. Thank you for having me, yeah.

Speaker 1:
3:10

But that is the roadmap for today because that was a lot to unpack for us for the hernias. So when you talk about no-bolt hernia, can you expand a little bit more about the no-bolt hernia and maybe where it's at specifically? Is it in the pelvis it can it be anywhere anatomically? Where do we typically find those hernias?

Speaker 3:
3:35

Well, first of all, remember that our title of last podcast was growing ecology, and so that groin pain and pelvic pain, it all goes together. It's not always just one thing. And I would say, when it comes to if you have those herniated discs and just a backtrack to, your personal question.

Speaker 3:
4:00

If you have those herniated discs, they should be able to do a dermatome map on your body and if your pain is consistent with those discs or not consistent with those discs, because they very much could be a driver of pain. But they could not be a driver of pain and so you're treating those and it's not helping and that's a concern. If somebody has bowel and bladder incontinence or a failure to be able to go and they also have those herniated discs, let's also remember that that's a medical emergency and if those two come together you need a neurologist to take your spine very, very seriously. And you think I'm giving the warning for, oh, she has to cover her ass. But the actual reality is I had it happen twice with patients last year that they were convinced it was something else and really when you do that full exam on them and check the dermatome and myotome and whether or not they have bladder, they're not able to have bladder and bowel incontinence or they have a failure to be able to empty. They had impinged nerves that needed almost immediate spinal surgery. So I always mention that, as I had it happen twice.

Speaker 3:
5:22

But I want to mention that when you talk about noblege hernia you're typically talking about in females, though it could happen in anyone. You're typically talking about impinging what's known as the allele and glenal nerve, or the genital branch of the genital femoral nerve, or the femoral nerve, which, and those pain tend to be down the groin into the inner thigh, across the pubic bone and wrapping around from L3. So it wraps around the body to the side of the stomach and down into your groin, tends to be the allele and glenal and the genital branch of the genital femoral nerve. The femoral nerve tends to be. If it's impinging that nerve tends to be this deep, achy, gnawing pain right down the front of the leg into the quadricep pain. So what's interesting to me is that people call any of those sciatica and those are not sciatica. Sciatica, very exclusively, is the sciatic nerve and it runs from your ischial tuberosity, which is this little sitz bone in the back of your tush, down the back of your leg. That is a true sciatica.

Speaker 3:
6:48

And when you talk about sciatica, what's interesting is that the uteral sacral ligament, if you have endometriosis you have uteral sacral endometriosis is going to aggravate and irritate the sciatic nerve as well, as if you have a very tight either piriformis that's aggravating the pudental nerve, or if the pudental nerve is fired up, you're going to get that sciatic like pain right from that as well. And then the last thing is if you have a little femoral acetabular impingement, which is a hip disorder, you can get some sciatic related issues. Now at this year's endometriosis summit March 8 through the 10th 2024, we will be having a full course on groin ecology, and so I've been doing a lot of research related to these pain syndromes that we get in our legs as people with endometriosis. And there is a little bit of research some published, some I've called the authors, some I've called the researchers that if you have an upregulated bladder, which we know comes very often in endometriosis, that you're also going to get an upregulated ilioin-greenle nerve, which is that nerve that's sort of on your side of your belly, into the groin, and you may also get an upregulated pudental nerve.

Speaker 3:
8:24

Now that research begins to flow into this other research that says you may need, if you're working on those nerves, to work on what's called the posterior cutaneous nerve and that particular nerve. I sort of knew my exploration into that since the last time we talked, if you were to sort of take your hand and grab sort of the fatty part of the tush. You know, like you wanna cop a feel on your own tush. I mean, obviously you give yourself consent, but if you wanted to cop a feel on your own tush, then it's sort of what you grab is that posterior cutaneous? And they make this soup together pudendal, posterior cutaneous and ilium glenol, and I thought that that's sort of very interesting.

Speaker 1:
9:22

Okay, we were talking about this because you were talking about the. It like skips, your butt goes right underneath there, right, and then skips.

Speaker 2:
9:35

Skips my hamstring and then goes right into the back of my knee. But I also have right in the front, where my torso meets my thigh, this pain.

Speaker 3:
9:49

And honestly for me, the way that I learned, I have to see it Right, so that a little wait, wait. But I have something else to say now that you stood up and you're showing me something so that very much could be a mixture of ilium glenol and also maybe a little obturator. Is there a scar? Almost right where you're putting your hand, you have a horizontal scar.

Speaker 1:
10:14

Yeah, C-section scar.

Speaker 2:
10:17

That particular, and it's C-section, c-section or a surgery, two C-sections, and that was excised when I had my excision surgery.

Speaker 3:
10:26

That particular scar tissue. It's very possible that scar tissue itself because fascia is a layered healing response, that that is so tight that it's not compressing those nerves but that it's pulling into those nerves. So the first thing I would do, find your way to either New Jersey or Miami, either one doesn't matter to me and I would do a manual, integrative release of that particular scar tissue because, listen, scar tissue has to proliferate to heal. That's how you heal. But when you heal normal fascia is linear in its laying down, you see like this. And when you heal scar tissue it's like this right. Of course these are all easier on video than probably on audio.

Speaker 3:
11:21

And that particular scar tissue when it's healing all in multiple directions like that. It's almost as if you're pulling your shirt here. I can have the tension over here and honestly, the first thing I would do in your particular case and almost anyone who's had C-section, open hysterectomy, abdominal wall endometriosis is do a scar tissue release and that's its own podcast. But there are multiple forms of scar tissue release. I do a very integrative method that has four parts and it's as if you're playing a piano on the skin and you're moving it in multiple directions. But other people might use some of which is called ISTEM I-A-S-T-M and that's a derivative of Gua Sha, which is a way of using tools to manipulate the scar tissue.

Speaker 3:
12:20

I think when somebody's had a lot of trauma, I like to use my hands because their body will let me in as it needs to and, I think, a tool you're just going in, no matter what. Don't forget we all have a trauma background and so I wanna be let in rather than force my way in. But also, if you can't access a physical therapist, who has great techniques for this, you can try dry needling it. Sometimes you can find an orthopedic PT who can dry needle a scar tissue and sometimes you can find an acupuncturist who is willing to go with you and use the acupuncture needles on the scar tissue. That's a good thing to try and I can say you could find very temporary relief on a very specific placement of a TENS unit. But it's very temporary, like as soon as you touch the unit off it would stop.

Speaker 1:
13:21

Would cupping be beneficial in this situation as well, or is that just more trauma? Oh, I love this. I love this question.

Speaker 3:
13:27

Okay. So when we talk about, remember, I showed you how scar tissue layers very differently, right? So when you do Think of like lasagna layering.

Speaker 1:
13:35

For those who can't see, it's like a lasagna layer. Like you have multiple layers.

Speaker 3:
13:40

Right, but then when it's healing, anytime you've been cut and something's trying to heal, think of you tried to make lasagna with spaghetti, right, you know. Think of what would happen. Which I'm gluten-free, so I forget lasagna. I had to. It's the holiday time and I had to make coogle oh. I couldn't find a. I couldn't find a Cassava noodle, because I can't even do the rice noodle. That was lasagna, so I had to make my coogle out of spaghetti. So that's how I know it's not gonna.

Speaker 3:
14:09

And no dairy, and it's not a new but you know that's how I know it's not gonna lay down right, so I Would. One of the things that's very interesting is when we used to do trigger points, which we now call tender points. We press into the skin, so you're going from the outside layer to the in Inside layer sometimes is forced, depending on how much you go with it. What I find lovely about hopping is you're going from the outside layer, from the inside layer to the outside, because it's a suction cup that's Suctioning away the different layers of the fascia. So would it be helpful there? It certainly can't be hurtful. How many weeks are you past? That looks like years.

Speaker 3:
15:02

Yeah so like, certainly can't be I. I would definitely have the scars years old. I would feel very comfortable using cupping there. I would use the tiny little cupping. Cupping became my favorite thing because during COVID, because people could access cups on Amazon and then get online and I could show them how to use it. So you have to be aware that you can Bruise and a bruises, that you've popped a blood vessel. You know you don't want to do that with. You don't want it to Aggressively cup. I don't like moxie combustion, which is like a burning cup for somebody to do at home. It's different. If you're practitioner does it and that is a nice thing to try there. But so are all the other things that I mentioned as well.

Speaker 3:
15:51

I also left out of the conversation. You could begin your Release session whether you're gonna use your hands. You're gonna need to use dry needling or you're gonna use a cupping With a castor oil pack to soften the tissue first. Yeah, that's yeah, instead of just heat. But honestly, like I'm telling you, like you guys can't see it on the audio the way the lateral most corner of that scar is pulling, I can almost See how it's tensioning. It's tensioning into the nerve. Is that your only problem? I don't know, but you really need to start with that. Okay, so good thing I made you get almost naked.

Speaker 2:
16:33

I know I'll get more naked. If you want me to Dedicated, I would say is I'll just stand up?

Speaker 3:
16:40

is that the posterior cutaneous nerve? Is you know?

Speaker 3:
16:44

remember I said, like after you consent for yourself, that it's that where you grab that little, yeah, like and and I have never met someone who has an ovarian cyst that doesn't grab their tush like that, never, ever, huh, and I find that really interesting. It and especially if you have a rupture, that somehow the fluid really aggravates that nerve I that posterior cutaneous and it's very superficial and of course FAI, which is a impingement syndrome of the hip, can cause a little bit of pain back there as well.

Speaker 1:
17:21

Would the? So both of us do, do? We've done dry needling for the iliacus. We both have been very, very, very tight right there, and it's released a little bit. You said this last time, right.

Speaker 2:
17:36

Or not so much, I don't know. I feel like I go one week I'm good, and then it were. I feel like it's good, and then the now I'm back to almost square one.

Speaker 3:
17:45

I. So this is my thing with this so as syndrome, right, mm-hmm, the so as is, and and for those of you who don't know this, the so as muscle group is combination of a hip flexor Complex. I guess we would call it one being being iliacus and one being so is, and certainly you can go to google and see what both of these muscles look like. I think two things. Rarely is Like you know, before your diagnosis. Um, it happened to me.

Speaker 3:
18:19

A lot People go oh, you have so is syndrome, you know. And the issue becomes that the I think it's illy I'm going to runs Between the so is muscle. I have to double check the nerve, but I, the nerve, runs between the so is muscle. So anything with that nerve is going to turn up, your so is muscle. But anything with your pelvis, any alignment issue, any one muscle that's too tight, is going to throw off iliacus, because iliacus runs like almost against the bone, right?

Speaker 3:
18:50

The other thing is that the so is itself has a component that's both pre peritoneal and retroperitoneal, and so any component of a pelvic disease is going to throw off the muscle. So I've seen this with people I have terrible so is syndrome, but like, really they have nine million other things that need to be treated, and then the so is probably would release on its own, including that the so is is providing support for a diaphragm that's not Working with full excursion in all three planes the way a diaphragm should, and also that their abdominal muscles maybe aren't contracting and expanding the way that they should because there's some sort of ongoing weakness may be triggered by pelvic disease, may be triggered by a hernia, and the so is is doing double time there, and I mean so is syndrome in the foot. They're like very good friends. So if you're an internal rotator Of, or if you're a pronator in your foot, like your hip flexors going to do double time trying to To fix that.

Speaker 2:
20:02

I know complex, you know it's like super complex it is, but it's all we like Um, I'm going to give a shout out.

Speaker 3:
20:08

I like Amanda Olson is a good interview on this one, and also Jay Michelle Martin.

Speaker 1:
20:14

Well, jay Michelle Martin and Amanda Olson are both fabulous people, but Both good interviews on these particular talk going back to like figuring this out, though, because we're Recognizing that that it's not one or the other right away. It's hard to differentiate. How do we get this diagnosis when we're talking hernia, is it just so, as is it hip placement, is it? Is Carnets test helpful in finding hernias, though the carnets test? I?

Speaker 3:
20:42

think in a day and age when we have decent imaging, I don't need from a Carnets test that could or could not be positive of her. You know, right, so many other things are gonna. It's like, um, how many of you had appendix? And then that that's. I don't remember what side you're showing me. But if you have appendix endometriosis Then you're like how much appendix endometriosis did I have? And everybody was like no, mcburney's wasn't positive. Yeah, because like I had already ruptured off piece of my appendix. So I mean that that's. You know, those tests are not fail safe. And that's also one of my issues with when people with endometriosis Head to an ER and ER is looking for what's going to kill you.

Speaker 3:
21:26

Yeah, they're not looking for what's going to increase the quality of your life. And in an ER those things need to be positive To get treatment. And then everybody screams at the ER gas, let them. Which the? The ER doesn't know better. I don't think they're. And also, in the day and age of covid, I think most ERs have had it and we need to revamp the way our medical practitioners work to get them some Body, mind and soul care for themselves, because they can't give anymore.

Speaker 3:
21:59

But I think I would not rely on carnets. I do believe that if your imaging is done properly and read properly, you can locate the hernias. What happens is, when it's read, though, the doctor will say to you I don't know if that's the cause of your pain, and most people want to Want somebody to go yep, this is this, is that cause? Like. So when the doctor says to you I don't know, this is what I see, I'm reading this, I see the hernia there and it might be your cause of pain, but it might not be your cause of pain, that's like not enough for a lot of people. No, and I think you have to do some Soul searching to decide if that's enough for you, because there are plenty of people when I'm convinced that's, that's their pain and they should roll the dice and try fixing the hernia.

Speaker 1:
22:52

So but do they need a specific MRI done for the hernia to be found or a certain placement?

Speaker 3:
23:00

I believe there is a protocol, okay, developed by Shireen Tofai, twfi, gh, and the protocol used to be on her website and you would need that protocol read by somebody who spends a lot of time dealing with occult or noble churnia, dr Tofai being one. I think she has some sort of system where you can upload and have her read. In New York and sort of on the East Coast we tend to send off MRIs to be read by Dr Zolin Z-O-L-A-N-D, who's also a wonderful podcast guest, because he talks about my other, not really such a big concern, but he talks about pubalgia, which is pubic bone related issues, or sports hernia or pubalgia. In that particular case you can get a disruption at the plate where the abdominals and the adductors they both connect in the same area. You can get a little tear in there. That generates pain itself. Not as common in the pelvic pain community, but for those of us that are very active not uncommon, not hugely common Now that one's its own podcast.

Speaker 3:
24:29

But when it comes to sport hernia and pubalgia, you have to decide if it's worth fixing. Not that are you worth fixing, but that is the possibility of the outcome worth fixing. Somebody does a lot of figure skating. You're certainly going to roll the dice on the sport hernia. Somebody plays a lot of tennis but it's been five years since they've had the sport hernia. You're going to try a whole lot of therapy first. That sport hernia I would defer to him.

Speaker 2:
25:00

Are you taking notes because?

Speaker 3:
25:02

first I'm going to.

Speaker 2:
25:03

New Jersey. Then I'm taking the notes.

Speaker 3:
25:08

Why. I believe that Dr Zollan will read remotely and I believe Dr Tofile read remotely. I don't know if both of them do, but a lot of them will say if I see this, this could be generating your pain, but it's not necessary, they're not going to give you the gotcha. And I think, like, unfortunately, having pelvic pain, people want the gotcha and also people want we've talked about this before People want one answer yes, you have endometriosis. That's driving your pain. Except endometriosis isn't the only driver of pain, and if you have endometriosis, you could still have 25 other things wrong with you, from something like a conductive tissue disorder to a hernia, to a bladder and we just talked about how the bladder is a component of up regulating the nerves. And so there is no gotcha moment. There is a now we're going to begin down this different journey of figuring out and unlayering the things that could be wrong. So when a patient seeks a gotcha they may not always- find it?

Speaker 2:
26:19

Yeah, and I think I think for me naively I thought, you know, my first surgery was ablation. We all know about that. I really thought naively that after I had excision I was going to be good, this crippling pain was going to be gone, and that crippling pain is gone. But now it's sort of, like you said, all these other pain generators and all of these like 25 years worth of this that I'm now sort of working through and I wish there was that I found it and that's it, and but you just, I think, stay the course and keep trying, because the quality of life is super important.

Speaker 3:
27:01

I think a lot of the issue becomes that by the time we're diagnosed and then we access excision, most of us don't have the mental wherewithal to go through another journey, because we're already traumatized, gaslit and partially mentally broken already. And so when somebody says, but here's the 78 other things that can be wrong with you, it's double the frustration. And then perhaps you've paid for your excision and you are just. Then the anger develops and then that only up regulates the nerves and then you're left in this situation. That is just like a bomb went off in my life and it's now. I'm never going to pick up every piece. It's very hard.

Speaker 3:
27:53

And I will also say as somebody who's been an advocate for a very, very long time years ago we were so eager to get the word not me, because I always preached it this way I'm going to stick up that flag but many people were so eager to get the word out about excision that it's unfortunately translated into this excision is the answer in the endometriosis community and excision is an initial step to answers. And there is no the answer and I think it's very, very frustrating and it's frustrating. You know the endometriosis summit. We do talk about excision, but we have hours and hours and hours of content on what else? You know, we had four hours on the ladder last year.

Speaker 1:
28:53

And that's what I think is so valuable in what not only what you're doing, but like why we're taking a whole body approach is because the endometriosis is one part of this. It may. Is it the thing that caused all of this? Maybe, maybe not. We don't know right and there's no way of really finding out what's causing what right. But at the end of the day, if we're not addressing every part of us, the grief, so we're going to have a grief counselor on here soon talking about this, because we've missed that sometimes when in our process of thinking of healing right, you're very good at it, sally. You've done a lot with talking about that grieving process and processing that, but we have to. You do this so well. This is why I love the summit and I'm probably a free advertisement for you any day of the week because you do this so well. You connect so many different dots that allow us to just not fixate on one thing and one thing that's failed us. It allows us avenues of potential life changing quality of life.

Speaker 2:
30:02

Yeah, I think there's hope, there's just hope.

Speaker 3:
30:05

Empowerment.

Speaker 2:
30:05

Yeah.

Speaker 3:
30:06

But I think also like the financial state of endometriosis, and that's its own conversation. But we, even as an entity, tried to get involved with creating something that would increase access and that particular entity just wanted to profit off of patients and we had to leave. And yet it still exists and everybody thinks it's like some directory to care and it isn't. And I think ultimately, until we change the guidelines from ACOG and truly change them not change them as like a response to they have to do something to seem okay, but until those guidelines are really changed, we can't begin to embrace those out there that are so frustrated. I think a lot of that starts with the way endometriosis was founded and it does unfortunately tie back to Samson and tie back to Jovenson Meigs. That's why we'll spend some time on that, but I think it's really, really difficult, it is really hard.

Speaker 1:
31:24

Do you feel like, when we're talking diagnosis and getting care for physical therapists, when we're talking hernia and all these other elements that are pain factors, what are some ways that they can check off certain like not a list, because I think everyone's so different, but how are ways to rule out? Is this a hernia? Is this maybe just this muscle? What are some ways that can help physical therapists and people going to physical therapy trying to navigate that Because it is so expensive?

Speaker 3:
31:55

Well, we're going to defer to Dr Shri Kandy and Dr Ahmed, who have developed a checklist from that. I can also say that, while I'm not a fan of everything that they do, the International Public Pain Society has a checklist as well, but I think ultimately it can become very overwhelming. If you see me, I'll give you the whole checklist, but if I give you a checklist for 12 things, then it becomes very overwhelming. And don't forget, my ultimate goal is to make sure that you don't have a sick person persona and so if I hand you a list of, if I go down, 16 things I don't think I'm going to get any. It can become very overwhelming. Yeah, so top things I would rule out.

Speaker 3:
32:46

I think the irony is super easy to rule out or rule in. What's hard to rule out or rule in is whether it's coming from the endometriosis or not. It is not a fail safe, but you can try lidocaine into the ilioenguino nerve and the general branch of the general femoral nerve. You can do the femoral nerve but it's much harder. You can also do the pudental nerve. Sometimes if you do the pudental nerve, then all the pain stops in the front, for whatever reason. And trying the lidocaine in those nerves which most pain management anesthesiologists anywhere in the US should be able to do. Whether or not they'll do it if you ask I don't know If you're getting relief from those you can try a series of them or you can ask for an MRI to really rule in or rule out whether or not you have a hernia.

Speaker 3:
33:37

I think to rule in or rule out pelvic floor dysfunction it takes a very good pelvic PT. Whether or not they take your insurance is a whole other conversation. And I think ruling in or ruling out bladder dysfunction or bladder up regulation, if you have endometriosis in your pelvis because the bladder is the sensory driver of the pelvis, you have a bladder dysfunction Right and that's going to just turn to rule in or rule out. Those three things are really important and years ago we used to have all patients on all endometriosis patients on a bladder diet but it became so restrictive that people were like getting eating disorders. So I don't do that with patients anymore because that's not good. No, and I think I do working clinics and with doctors that like to do a bladder installation and if it stops because that's, they call that noninvasive. I've had one.

Speaker 2:
34:34

I don't call it noninvasive.

Speaker 3:
34:36

You're sticking a tube in my urethra. That to me is the definition of invasive, right so? But there are people that they do the that particular test and if your pain silence is after that, then we know something's going on with your bladder. Some doctors will prescribe medicine to try to see that instead of the installation. But, and I think you know, pelvic floor PT should be more accessible than the person who's had one class and they think you know a dilator and biofeedback or where it's at, even though those may be a component of care, but they're not the only part of care. You know those are the big three.

Speaker 1:
35:14

Here's something that I don't know as much about how do you differentiate between, maybe, a frozen pelvis and a hernia, or do? Can they go hand in hand? Can they not like the?

Speaker 3:
35:25

pain Go hand in hand? I think they would likely go hand in hand. Okay, it is not proven in the research, but I believe that because we have a frozen pelvis for like 10 years before anyone pays any attention to us, that that's how we dislodge the piece of pre-peritoneal fat that lays against the nerve. I think that that's a big component. It also may be that lays down a utero experience, but I'm not sure on that. I think a frozen pelvis can be you don't really diagnose it but can be suspected through a bimanual gynecological exam. A physical therapist wouldn't be doing that right Right Years ago. They would do a finger in the rectum and a finger in the vagina to see how much everything glides. That's a gynecological thing, not a pelvic PT thing. And then the other thing is nowadays and we're going to show this at our imaging course our frozen pelvis can very much show on MRI.

Speaker 1:
36:33

Because that has been a question is is this frozen pelvis? Is this a hernia? Are they going hand in hand? Does frozen pelvis mean every part of the pelvis or does it mean a section of the pelvis Usually?

Speaker 3:
36:45

it only has to be a section. But patients love to have, they love to come out because they finally feel validated. But they love to. My pelvis was frozen.

Speaker 1:
36:57

It's like okay, Right.

Speaker 3:
37:00

And that gets back to that conversation of working on the identity and persona of somebody who has endometriosis. But the other piece of it is that, yes, they can come together. If you've had one really decent excision, it's unlikely that you have a frozen pelvis. You could have adhesions. I tend to believe. If one of these hernias is present, it's not the adhesions, but you don't know, unless you are really working with someone who's willing to see it through with you. And then the other thing, because I had this one called a couple of weeks ago you can't expect to feel all better 48 hours after surgery or even that's a good podcast I could come back for or even eight weeks out of surgery because you have to recondition your body.

Speaker 3:
37:56

If you had a hernia or frozen pelvis or both, you don't have to even fire your glutes. You have to work with somebody that does that.

Speaker 1:
38:07

And there's so atrophied after having I mean even before surgery, because we were master compensators. We're a little cheaters when it comes to our bodies and so we have no idea even how to fire it. Like I've talked about this before, we have no idea how to fire our glutes. I think I'm firing it and you could touch me and it's like the pillberry dome and like just right, but there's nothing firing there.

Speaker 3:
38:30

Weakness begets weakness, so you're in pain, so you sit down and then, like you know, you're in pain, so you're not standing back up again. And I don't mean it that way, you know. I don't only mean stand up and sit down, but like you have to work with somebody, one on one, to get that strength back. Yep, cause weakness causes a lot of pain too, and I'm not saying that you are weak and I'm not saying that weightlifting or toning is going to outrun your pain, but it is part of a rehabilitation process, and we would not do a total knee replacement without reconditioning the body and not just the quadriceps. So why do we think we can have major gynecological surgery without reconditioning the body? Absolutely.

Speaker 1:
39:21

Yeah, absolutely, and Libby Hainsley was just on. We talked about this, so go and listen to Libby Hainsley's episode. And we talk about this, about the reconditioning and strengthening of atrophied muscles and joint stability and the importance of that post-surgery, and it's a slower process for those of us who have connective tissue disorders as well. Why do we rush ourselves when we didn't rush ourselves to get better care? Sometimes and I'm speaking for me.

Speaker 3:
39:48

We wanted to rush ourselves to get better care, but we couldn't, we couldn't.

Speaker 1:
39:51

Yeah, I had two kids and I went through the process postpartum. She said it took you nine months to get to this point. It's going to take you nine months to rehabilitate your core and everything else, and that is triggering for some people. But it is true in surgery as well. I had surgery for both of mine, and so that gave me just a slight bit of inkling, post my ablation surgeries, of how much our body will compensate and break down if we're not kind to it and healing.

Speaker 3:
40:25

Well, it's very interesting to me is the ACOG guideline for postpartum care includes pelvic physical therapy, but it doesn't include that in endometriosis and it's so like the pelvic PT's want to cheer on ACOG for including that and I'm not cheering anything, because everybody deserves access.

Speaker 1:
40:48

Everyone and it is harder for I will tell you, knowing people who have had kids and knowing, obviously, having endometriosis, some who haven't had kids, endometriosis pelvic floor PT has been way more beneficial with endometriosis patients Long term. It's a long term healing process and I'm not a let's get you back on track after having kids, which is valuable and needed, but endometriosis patients, we are untangling this for years for years. So it's, I don't understand. Don't get us started on ACOG over here, okay, don't get us started on ACOG.

Speaker 3:
41:29

So, yeah, I mean I think it's also an awareness related issue, because what you don't realize is, as long as that standard stays the same, then other specialties just believe we can take a pill or have a hysterectomy, and so then it's hard for that GI specialist to send you to someone, the urologist to send you to someone, the primary care to send you to someone. So it becomes a whole issue. Yeah, I mean that's, that's its own.

Speaker 1:
41:59

That's its own podcast. That's his own week long podcast. I feel like that's a whole season. Yeah, can you tell us is there a difference between rectiostasis and a hernia, or a way to tell the difference?

Speaker 3:
42:12

Well with diastasis recti.

Speaker 1:
42:15

So at its core.

Speaker 3:
42:17

A diastasis recti is when the linear elbow or the fascia that lays between the rectus abdominus muscle splits. Now people say it splits during pregnancy. I have never been pregnant and mine split from adenomyosis. And I would like walk around New York City in the summer and everybody you know New York City in the summer, people wearing very tight clothing and I would be like why does my belly look like? I'm nine months pregnant and I never had a baby and that's because the diastasis I had split and in my splitting I put myself at risk for a big abdominal wall hernia that eventually I had fixed.

Speaker 3:
43:01

But at its core the diastasis recti could be called, I think, by some, a hernia, technically by the definition of hernia, but I don't always loop them together because of ventral hernia. That would be not an inguinal or ephemeral hernia but a ventral hernia is sort of on a flat part of your abdominal wall and it would be anywhere on the abdominal when the linea alba splits. There's different gradations to that and I think it's graded one through one through five. Now, tummy tuck is not for everybody. It is a brutal recovery and very, very hard and very expensive. But if you have a larger diastasis, I believe, having lived many different ways of trying to help this diastasis, you're going to get a lot more stability from having the diastasis sewn clothes. Now, that's only if you have a progressed grade of it. If you have a small one, it's not a big deal. And I remind people that one day you'll be old. God willing, we should all get old.

Speaker 2:
44:16

Forever, forever.

Speaker 3:
44:17

And you're going to want that stability in your abdominal wall because, as your lungs change, your abdominals are going to help you breathe, your diaphragm is going to help you breathe, it's going to give you support to your bladder. There's lots of different reasons. Now there's this big personal trainer out there who says no, the tuck doesn't provide. I've lived it. He tells me, when they sew that diastasis back together, it is like night and day, and so never rule out that if you're really struggling with it, If it's a small one, there are very specific exercises you can do to draw it back together. Never perfectly, yeah.

Speaker 1:
45:00

Yeah, because we were talking about that is just, both of us have had that experience having kids and then having all the surgeries and things like that is differentiating between what's a normal hernia when we go to talk to physicians and how do we communicate the different types. Not that we need to communicate the different types, but when we're struggling with what we're talking about the no bulge and when we're, it's really hard to communicate these pains to the pain doctors or to you know?

Speaker 3:
45:30

A inguinal or femoral hernia is going to cause pain down into the groin, perhaps down the front of the leg, even though it's really located in what is the site of that abdomen. A diastasis recti is going to cause like an aching of the front abdomen and a heaviness in the pelvis, as well as, for many, some back pain not for all, and sometimes the back pain isn't ever resolved, even with diastasis, pt or tummy tuck, things like that. And so I wouldn't. If you have a large diastasis and you're having bloating and you're having pain in your like a heaviness in your pelvis and you don't think you have a denomyosis, because diastasis is more like ruling in or ruling out, the denomyosis versus the diastasis If you're having those particular issues, that's usually not hernia.

Speaker 3:
46:32

I mean you could have a ventral hernia. I saw one yesterday. Actually you could have a ventral hernia in the front like that, but you're not confusing that with a diastasis. I have seen I did have a patient over and over and over who was like super thin so that when she got pregnant she gained a lot of weight and split right and it's sort of a normal experience of splitting, even though it's not normal, and she was convinced she had a denomyosis, had a hysterectomy for a denomyosis and everything was really coming from the diastasis.

Speaker 3:
47:09

That's so interesting, which is not to say like I think it's typically the other way doctors blame the diastasis, but they have a denomyosis. I think that that's more common, but I have seen it. I have seen it the other way around and she was very young and again it gets back to. You know, that's a patient autonomy and it's her choice to have the hysterectomy and doctors should honor that. Yeah, you know she shouldn't have had to go to three doctors because one was like you might want more children. No, she's making a choice, she's holding up to make a choice. She exists.

Speaker 2:
47:45

Right. So on your last podcast I told you I listened to this a number of times. The other thing that sort of struck me. So you're probably fine if I say this, but both Alana and I ufrectomy, hysterectomy none of that left. And so now we're on this hormone journey, with not a lot of literature out there to support replacement with testosterone and I know you specifically talked about estrogen replacement and the importance in that for joints and ligaments. Do you have any words of wisdom or any sort of thought process, right or wrong, when it comes to testosterone and the role it plays with that, or is it just specifically estrogen?

Speaker 1:
48:30

Join us next week as we unpack part two of this conversation. You won't want to miss the insight that Sally has when it comes to hormones and endometriosis care. So next week, continue advocating for yourself and for those that you love.