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!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello.
(00:00):
Welcome back to TMI talk withDr.
Mary.
I'm your host, Dr.
Mary.
In this episode, I brought onDr.
Sally Rell to talk about thehidden layers of pelvic pain
that often get dismissed,misdiagnosed, or misunderstood.
I.
A little bit about Dr.
Sally Rell.
She is a pelvic floor physicaltherapist and a person with
endometriosis.
(00:21):
After it took 23 years of sheerfrustration with the medical
system, Sally created a practiceto be a safe haven for all
people with endometriosis andits associated disorders.
Together with Dr.
Andrea Vidali, she has foundedthe Endometriosis Summit to
unite surgeons, patients,practitioners, and caregivers to
(00:44):
help drive the endometriosismovement forward.
She has a passion for treatingpeople with endometriosis that
also have leg bladder and groinpain.
She also gives a voice to allwho struggle with endometriosis
and adenomyosis.
She reminds the endometriosiscommunity that you are worthy,
and together you can ignitechange.
(01:06):
So in this episode, we're gonnadig into.
What an occult hernia is and whyit's often missed on imaging.
Why so many people are toldtheir groin pain or
endometriosis, or just theirovary when it's not the role of
the ileal, andal, and genitalfemoral nerves in chronic pelvic
pain.
(01:26):
We also address why we thinksomething might be a yeast
infection, when it couldactually be nerve compression
causing itching in the area.
Why your feet, fascia, anddiaphragm might be contributing
to your, the pelvic floorsymptoms or pelvic pain.
Why misused medical language cannegatively affect a patient's
(01:48):
healing and their outlook ontheir prognosis.
The role of the thoracic spineand mobility, gait and lymphatic
system and nervous systemregulation and how it all
affects pelvic pain.
And finally that be being apelvic floor physical therapist
doesn't necessarily mean we'reone trick ponies and just using
(02:09):
internal treatments for theentire session.
We have such a vast skillset andthe ability to help people with
pelvic pain.
So even if you're a.
Physical therapist orchiropractor, or a movement
professional, you can learn alot from what we're gonna be
talking about today because somuch of our focus is not on the
(02:29):
internal treatments, but moreabout looking at the person as a
whole.
So without further ado, we'lljump into this episode.
Welcome back to TMI talk withDr.
Mary where we dive intonon-traditional forms of health
that were once labeled as tabooor dismissed as Woo.
I'm your host, Dr.
Mary.
I'm an orthopedic and pelvicfloor physical therapist who
(02:51):
helps health.
Movement and rehab professionalsintegrate whole body healing by
blending the nervous system intotraditional biomechanics to
maximize patient outcomes.
I use a non-traditional approachthat has helped thousands of
people address the deeper rootsof health that often get
overlooked in conventionalwestern training.
And now we are gonna be startingour next episode.
Audio Only - All Partic (03:13):
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 justchatting for 30 minutes before.
Well, who knew?
I found like, uh, a missingpiece of me over there in Texas.
Yeah.
Oh my gosh.
I feel like we could talk forhours, especially with Heather
(03:34):
too.
I mean, the three of you.
Well, Heather's the best.
Y'all are great.
Um, okay, well, we'll just goahead and jump right in and, uh,
yeah.
So from your clinical lens, whatpatterns or patient
presentations make you consideran occult hernia?
Even if I imaging comes backclear, I.
The biggest pet peeve I have inanyone with pelvic pain or
(03:57):
endometriosis is when they taketheir finger and they point to
their pelvis where they thinktheir ovary is and it isn't
really their ovary, and thenbecause they think it's their
ovary, they go to thegynecologist.
And the gynecologist has no ideawhat a nerve or what a vein or
what fascia is and goes, must beyour ovary.
(04:18):
I don't see a cyst, so we'lljust take out the ovary.
And to me that is a frustratingsituation because there is a
series of nerves there, but thebiggest nerve in particular is
the ileal inguinal nerve.
And um, that is going to causethat lower quadrant.
Pelvic pain that, um, radiatessometimes into your pubic bone,
(04:43):
which means it's accessing adifferent nerve, the genital
branch of the genital femoralnerve, and then down into your
leg and thigh, and sometimeseven you'll get some pain into
the inside of your knee.
And those are presentations, inmy opinion, that should be
looked into for occult hernia.
(05:05):
What is AOC Cult hernia?
Is that your next question,Mary?
Yes.
Explain to everybody what culhernia is.
So I really, uh, changed thename to Hidden Hernia.
Um, but, and AOC Cult Hernia isnot necessarily a full blown
hole through the peritoneum,like a normal, everyday more
(05:27):
common.
Hernia is, it is more likely tobe a, um, compression of fat.
Not fat like your fat, but fatthat is native to the body
that's found in, um, sometimeswhat's the pre peritoneal space
or found sometimes in theinguinal canal and it's laying
(05:49):
against.
Um, this nerve really creating,um, pain along the, um, nerves,
the ileal andal nerve, and oftenthe genital branch of the
genital femoral nerve.
And that particular type ofhernia is not often spotted on
(06:10):
MRI or CAT scan because moreoften than not.
The radiologist is trained tolook for the full-blown hole and
is not necessarily looking forthe fat compression to the
nerve.
And so what happens is peoplewill do things like, I had the
ovary out, I.
(06:31):
And I still have the pain.
Yeah.
And now you don't have an ovaryand you could go into menopause
early and early.
Menopause is connected withthings 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 theyhave this pain and, um, nothing
(06:55):
has helped it.
Uh, and yet scans are negative.
And some, some people will evensay that they've had laparoscopy
for endometriosis and nobody sawanything, be it endometriosis.
Or a hernia.
And that's because the hernia isnot viewable at the same time
typically, unless you arespecifically looking in this
(07:17):
area of the body as, um, whenyou do the endometriosis
surgery.
So what would be the typical wayfor them to diagnose it?
Um, it is very possible to see ahidden hernia on MRI or CAT
scan.
If you are reading it right now,here becomes the problem.
I really only trust two peoplein the United States to read
(07:39):
them.
Um, luckily both of these peopledo, um, virtual reads.
Um, and I think the otherproblem is.
That not everyone will operateon them either, so that's why I
send people to specialists.
Actually, I would say there'sthree specialists that I would
(08:00):
send to, but like think of howmany people are in the US that
have this pain.
Think of how many people youtalk to on a daily basis that
go, my ovary hurts and really.
We're not paying enoughattention to the nerve that lays
in the space that people thinkis their ovary.
(08:21):
Now, will the hernia hurt duringmenstruation and during
ovulation?
You betcha.
Because there's inflammation inthe area, so people will go.
Oh, when I ovulate, it'sterrible.
Must be a cyst.
Must be endometriosis.
No, you very much can havedysfunction to this nerve.
(08:42):
Um, that hurts during ovulation,and that hurts during
menstruation.
That is not related to eitherovulation or menstruation.
But even like from a physicaltherapy perspective, a rehab
perspective, I meangenitofemoral.
And then in that area, you'regonna get referral from like T
12 to L two.
Uh, say somebody doesn't wannahave surgery or maybe they don't
(09:04):
have access to the people thatyou're talking about, you know,
we're both PTs, so you wouldRight, right.
Like, what are you thinking fromthat standpoint?
I.
I start with the spine justlike, because we established on
the part of the phone call thatwasn't recorded, that we, um,
somehow belong together in thisworld.
(09:24):
So, but I start with the spineand I think about where do these
nerves originate, right?
And so if you can, of course youcan look at T 12 really to about
L four to cover, um.
Both the, um, general branch ofthe general femoral nerve, but
also to cover the i inguinalnerve.
(09:45):
And then I think because theileal inguinal nerve wraps
around, there's a lot ofmyofascial work that can be done
on the external and internalobliques and, um, on in some
ways range of motion itself, uh,in rotation.
Um, but here's my other issueand I have seen techniques to,
(10:08):
um, floss those nerves.
And basically, um, you look atthe way the nerve runs, you can
open any anatomy book that youhave and you move the person in
the direction of the nerves andthen you can gently like, sway
them.
I usually go, um, directly inthe direction of the nerve
(10:29):
versus not.
Going in the opposite direction.
'cause that's like breaking downa barrier.
But the other piece is for many,myself included, because I had
one of these.
All those techniques in theworld may not be helpful, and
some people do have to manage,um, the hidden hernia by
(10:51):
removing the nerve compression.
And if you're in that populationand you choose to go through
that surgery, it can change yourlife.
Immeasurably because you'venever probably realized how much
that pain affected you.
Um, it's just like, you know,endometriosis.
(11:12):
Um, most people who have anendometriosis, who never had an
excision don't realize how muchtheir life changes when they
have an excision because theydon't realize how much, um,
they're being held back.
But the other thing is, ifyou're dealing with groin pain
in it and someone withendometriosis, especially on the
right, on the right, you have toalso remove the appendix because
(11:32):
so many people, even without itvisible at the time of surgery,
have groin pain from.
The appendix.
But if you also have the herniaon top of that, then you really
have groin pain.
And so you play this game oflike, well, what do I do first?
So like most of the time we havepeople, like if you have
(11:52):
endometriosis and you have oneof these, um, one of these
hidden hernias.
We do the excision first andthen, and then we see.
Because if you take down all theinflammation from the
endometriosis, maybe I have, um,I have techniques direct to the
ileal inguinal nerve itself.
That's like a myofascial, likestrumming almost.
(12:16):
But it's not really strumming'cause it's not.
Aggressive where you're workingalong the nerve on somebody's
abdomen.
You're, the other thing is itcan be very helpful if you dry a
needle.
You may be able to dry needlethat area.
You may be able also to, um,manage it.
I work with people who sometimescan do, not necessarily a
(12:40):
steroid injection, but um, theydo a tial injection, which is a.
Um, herbal anti-inflammatorydirectly into the nerve as well.
Um, and that may be enoughwithout having surgery, but if
your patients choose to havethose nerve injections, they
should see you like within thenext.
(13:00):
Um, within the next 24 hoursbecause 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 Somuch I.
I cannot believe how much wedon't look at the feet with the
(13:23):
pelvis.
It is astronomical how, I mean,it's, it's not astronomical,
that's not the right word, butit's just astonishing how little
we look at the feet, or at leastwhat I've seen, um, in my
experience.
In, in the pelvic healthcommunity is just only focusing
just on the pelvis.
Like it's, it's treating thearea, like you said, just kind
(13:43):
of locally.
The way I explain it is we treatlocally, treat the pain, treat
the source of the pain, but thenyou treat the Y.
Is it the foot pronating that'smaking it worse?
Is it that we're not gettingthoracic rotation because maybe
we're not pushing off duringgait because we're walking in a
different pattern.
Maybe we altered our gaitbecause of an injury five years
ago, or something along thoselines is.
(14:05):
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 Participant (14:10):
in the, in,
mary (14:11):
in pelvic health
Audio Only - All Partic (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, andwe're just go, go, go, go, go.
We're not breathing through ourdiaphragm.
Which then affects our lymphaticsystem.
Now add lymphatic system to thepelvis.
Now add on constipation.
Now you've got a cluster of shitall hanging out there.
(14:34):
Well, think about the diaphragmin a number of ways, especially
with our pelvic pain population.
First of all.
Our pelvic pain peeps oftentimesare hunched over a little bit,
or they're guarding their pain.
What's the, and their musclethey're gonna guard with
unfortunately, is theirdiaphragm.
They're gonna use theirdiaphragm as a postural mu
(14:55):
muscle, and then.
Um, that it's not going to workthe way it should, which is
gonna change, um, thoracicrotation.
But Mary, think about somethingelse.
When they do surgery on, yousuppose that somebody's had
multiple surgeries.
Um, when you have anesthesia, itchanges the way the diaphragm
(15:17):
works because it has to.
Right?
But for endometriosis surgery,they tip you back.
Because they have to insufflatethe belly with, um, gas so that
the organs fall away from, um,the abdominal wall and such so
that they can really search forendometriosis.
So they tilt back like theirpelvis is up and then their
right upper.
Audio Only - All Particip (15:37):
Right now.
Okay.
If, if they're doingspecifically, which I was gonna
get to in the next sentence, butif they're doing specifically
diaphragmatic endometriosis,they tip you the other way
because then you Right.
Okay.
But hold please.
On the diaphragmaticendometriosis.
When they tip you back in manypatients, that's going to change
(15:58):
the way our excursion is.
When we wake up from, you know,things that you need physical
therapy for, that's going tochange thoracic mobility.
Then, uh, when you have surgery,you don't like to take a deep
breath in or turn side to sidebecause it hurts like hell, and
that changes the way your brainconnects to your thoracic spine.
So you're missing that a littlebit.
(16:20):
And then the real issue becomes.
What about, um, diaphragmaticand um, lung endometriosis and
how is that fully impacting thesystem as well as, um, what is
the role of the vagus nerve inall this?
So you have all that with thethoracic mobility and then with
(16:41):
the foot.
I see that all the time becauseI do groin and hip pain in
relation to, um, pelvic pain andendometriosis and.
The person goes in to youroffice and maybe you've gone
outside to wash your hands, likemy sink was in another room, so
I would go outside to wash myhands.
When I came back, the personwould already be on the table,
(17:04):
usually whether I ask them to ornot, and then they're lying
down.
So a lot of people don'trealize.
That it starts from the groundup and I need to start the
physical therapy session.
I gotta look at, um, the wayyour, um, feet are working.
I gotta look at the way yourhips are working.
(17:25):
I have to look at how yoursternum is moving when you're in
standing.
And of course your head andneck.
And so there, and, and if youtalk about fascial lines, then
we really gotta talk about thefeet and thoracic rotation.
So.
Lots of issues and, and then Ihad the privilege of being a
(17:45):
non-insurance taker, and so if Iwanted to look at somebody's
foot, that's no problem becauseI don't care what the code says.
If you are in a big clinic andyour code says pelvis, sometimes
it's very hard for them to standup a patient and start working
on the foot or the ankle or thecalf, right?
(18:08):
Lots of fascia in the calf.
And I think, you know, we havechallenges in the way our, um,
medical system is see issue, fixissue.
When it's not fix issue, it'streat whole person.
Well, I worked in Nsurance modelfor seven years and I still
treated like whole body.
(18:30):
I would just justify it in thenote.
And so how much of it is thatwe're not justifying it in the
note because, and I don'tremember having any issues with
billing.
Once I justified it in the noteand being like, Hey, as they do
this, he'll, you know, theirlack of push off during gait.
So it's limiting their, youknow, their pelvis from
rotating.
So thoracic spines beinglimited.
(18:51):
So I also feel like there's apiece of, yeah, insurance can
say that, but if you'rejustifying it in the note, why
is that an issue?
And I was in that for sevenyears and I did that.
I think it's gotten a lot.
Dicier has it.
I mean, I've been out now sevenyears outside of, I think we've.
Look, I, I am not someone whowas rah rah insurance, but we
(19:15):
shot ourselves in the foot as aprofession when we allowed an
insurance company to determineour worth and our worth when we
treat the whole person.
Is that documentation thatyou're talking about that you
see a change in heel off that'saffecting the pelvis and
(19:36):
thoracic rotation?
We are trained for that.
And unfortunately in manystates, and it differs from
state to state, the insurancecompany is dictating what you
can do rather than the trainingthat you have.
Now, the other thing is how manyof our PTs listening are in
(19:57):
states where the PT is onlydoing the eval and the PTA has
to.
Execute everything, and Ibelieve that every single day,
every single session you see apelvic pain, endometriosis, or
even groin pain patient.
Every session is differentbecause there's an element of
eval for everything, but that'sbecause I'm a pt and I think a
(20:19):
lot of our PTAs are verychallenged by that also, that
the system is very hard forthem.
Well, I think that that goesback to, you know, what we were
talking about earlier, likelooking all the way up the chain
is, well, why are we soseparated?
I, I feel like our industryneeds to step up.
I mean, I think it's, it's hardbecause the industry is
(20:42):
dictating, right?
So then if you're coming out asa new grad and you're told, Hey,
only treat the pelvis, you'reonly gonna treat the pelvis and
you're gonna think just likethis in this.
Small, narrow lens.
Now that affects the quality ofphysical therapy across the
board.
What I have seen even in cashpractices here in Austin, that
(21:03):
people do internal treatmentsfor the hour.
For the whole hour.
Can you imagine?
No, this is not, I mean, I havepelvic pain, endometriosis and
hernias, and I could not do anhour.
I mean, I physically could notendure that.
No, they're literally like, it'sliterally like, it's, it's
something where it's like amajority of the session is
internal.
This has been normalized.
(21:24):
This is really messed up becauseI also believe that, and, and
our people out there listeningshould understand that pelvic PT
does not always mean stickingyour finger inside someone.
That the internal is one tool inthe toolbox, but there's 500
things.
Plus in that toolbox.
And we are not always doinginternal work.
(21:45):
And there are people who can'ttolerate internal work at all.
And we doing tons of progress.
And I think the pandemic taughtus that because we were treating
people, um, virtually well, I'vealso had it too, where people,
they go in and they're gettingtreated internally for that
whole time, but nobody looked atthis tissue, the skin, and it
was a dermatological issue.
(22:06):
Yeah.
Was it pH I find that also, youknow, our topic was supposed to
be groin pain, but I mean, itall goes together.
It goes together because I'mright.
I find that in the, um, in themissed hernia realm because
people think that anythingvulvar is pudendal.
(22:26):
It's all, oh yeah.
It's pudendal.
And they don't realize, and Iused to take out, um, I used to
map the nerve.
Right.
And there's a portion of thelabia that's ilioinguinal and
the, what's the portion of thepubic bone?
That's genital femoral and, andpeople don't realize, like,
(22:47):
first of all, they think theyitch.
It has to be yeast.
No.
If you sit on your foot for along time and your foot falls
asleep, the pins and needles canbe interpreted as itching.
So if you have a nervecompression in your pelvis.
That's the itching.
So stop taking the yeastinfection medication unless you
(23:07):
swab for it each time, becausethat's an indication that
there's a nerve issue.
Also, when they say burning, I'mlike, yeah, that's not your
urine.
That's, I mean, unless they havean active infection.
But after ruling that out.
That a lot of times is a nerveissue and then like it's not all
pudendal.
(23:27):
And we of course could have theconversation of just because the
script 15 years ago saidpudendal neuralgia'cause the
doctor didn't know what to writeon the script.
Does not mean you have to liveyour life in the box, that you
could only have this one thing.
And that's what I find I seewith the people with
endometriosis is you haveendometriosis, you've had a
(23:49):
horrendous time being diagnosedwith endometriosis, but
endometriosis also comes withlike 18 other things, and we
can't only think of you as aperson with endometriosis.
We have to think of you as awhole person.
Who needs all those thingsattended to from mental health
to diet, to pelvic andoccupational physical therapy,
(24:10):
we have to start treating youand treating everything instead
of you just going because theyhave endometriosis.
'cause like your lower quadrantpain may not even be related to
your endometriosis and you don'thave to have that pain and groin
pain to move forward in yourlife.
Well, I also think that you justtapped on something.
(24:31):
It's like the language thatwe're using with patients
because, oh my gosh.
The amount of stuff that we haveto be so careful when we're
talking about people's bodiesbecause, you know, I just had
somebody the other day come intheir, their practitioner told
them they have a spine of an80-year-old.
You know, and so then peoplehold that in their head forever.
(24:53):
Forever.
Well, Jason sure has a wholelecture on that.
We did it at the Endo Summit,but we call it words Matter.
But yeah, the other thing I hateis people go to me.
Oh, I had an MRI.
You should see what my spineshowed on MRI.
I don't.
I mean, I don't wanna say itlike totally, but I don't really
give a fuck what the MRI showed.
(25:15):
If you're gonna show, oh, I havea bulging disc, like a bulging
disc is another box for you togo sit in, because I would say
80% of the time that bulgingdisc is not.
Um, the stop point for yourissues.
And also we know now the thingsthat you see in that MRI tube,
(25:35):
um, in regards to your spine.
I'm not talking about everywhereelse, I'm just talking about the
spine.
Don't necessarily, there are notsuch 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 painbecause I have great mobility of
the rest of my spine.
I make sure I'm strong in mycore.
(25:58):
I make, and core, by the way,also includes the diaphragm.
It also includes in some waysthe ribs and the scalings.
Right?
It's not, and and I think towe're.
Especially when you have complexissues, you are pushed so far
that any little in informationthat you get becomes something
to grab onto.
(26:19):
And we don't want you, um, toonly define what's going on by
that.
Well, I think, you know, ifwe're talking to practitioners
and it's, and you hear patientssaying, well, I have endo, or I
have this, or like identifyingwith it, that is a yellow flag
to help that patient maybereframe also how they are,
(26:41):
they're speaking because.
That's then you're limitingyourself from everything.
I know that I've had it wherebefore I was diagnosed with Endo
and I was going through allthese different things about
chronic fatigue and nobody knewwhat was going on.
And you know, like you said,endo comes with a bunch of other
diagnoses, which you're alreadythinking you're crazy'cause
you've got all these otherthings going on too.
(27:03):
And in that, just being awareof, if I, when I stayed in the
victim mentality of, oh no, Ican't do these things because
I'm in pain, or like I have thisdisease or I have this, then you
limit the rest of your life andit almost perpetuates the
chronic pain.
'cause then your nervous systemis on more high alert because
you're not doing anything, butyou're dwelling on the pain
(27:24):
itself.
So there's this balance betweenrecognizing and respecting, Hey,
I have this, but also I am ahuman and it's not my identity.
Right.
I, and I also think likediagnosis.
Like you were saying, dependingon how it's presented to the
person, right, can be veryempowering.
(27:44):
So for example, I have pots andso for years I wanted to know
why my heart rate was high.
Am I just like a fatty on thetennis court?
'cause my heart rate is so highyet?
I'm pretty well trained,cardiovascularly, and knowing
that I had POTS was not like,okay, uh, this is why I can't
(28:06):
achieve I have pots.
It was, this is why I have tohydrate the night before.
This is why I need salt in thewater, and this is why it's okay
to say to the person next to me,we're gonna take.
Like bounce that ball a lotbetween points because I have to
let my heart rate drop.
And so there's a way when you'rea medical practitioner to
(28:28):
present diagnosis, that'sempowering.
And then there's a way thatpresents it where it's, uh.
Traumatic for your centralnervous system.
And it'll be interesting to seehow, um, as we move forward with
lots of work on our centralnervous system and, and work in
(28:50):
the research on that, how, howthat may change.
Yeah, it's, it's, it's reallyhard when somebody's so
connected to their diagnosisbecause.
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, areally bad spell of pots when I
(29:11):
was 18 after mono.
And that's kind of wheneverything kind of Me too.
Yours was too, yeah.
That's what triggered it all.
Yeah, I had, I couldn't get outof, I could hardly get outta bed
for a year in my first year ofcollege or like that last nine
months of college.
Didn't know what was going on.
Um, I was told to just pushmyself harder, so I tried to
exercise and I'd flare up,developed, um, what is it?
(29:35):
Uh, post exertional malaise wastold that I was crazy basically.
And it's not until like the lastcouple years I was like, oh my
God, I had pots.
And I think it's still likelingering.
It's not to the degree that itwas, but it's fascinating to
right.
I also how endometriosisinterplays with the nerves and
the veins and the arteries inyour pelvis.
(29:56):
And in my case, that was very,very significant.
We didn't know that until I was35, but that changed.
I.
A lot on how my pelvis worked.
And um, I think the role ofthat, and if you're, you have
frozen pelvis, we really can'ttell if it's just, um, a venous
(30:19):
issue or if the venous issueactually 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 manypeople because these things are
there our whole lives.
But then I think they gettriggered, you know, well, if,
(30:39):
think about it.
Endometriosis is laid down whenyou're in utero and then becomes
hormonally reactive.
If you go through, if I wentthrough my history, for sure, I
had it in my teens, and thenlike the doctor minimizes you
until you normalize it and thenyou end up like being so ill
that you have 9 million otherdisorders.
(31:02):
I think that's usually whathappens with endometriosis.
This is the first time I'vecourt like I.
I mean, it makes sense why potsand endo would go together.
I don't know why I hadn't.
Yeah, we, we have to explorethat more at the endometriosis
summit.
We had, um, Dr.
Brooke Spencer this year, we'relooking towards having her, um,
next year as well.
(31:23):
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 situationworse?
(31:45):
Um, and how about for those ofus with diaphragmatic
endometriosis?
That for sure is changing yourvenous system.
Um, and I think.
It makes a bad situation worserather than, it's a huge, um,
component of it now.
Can we say like, what is therole of connective tissue and
(32:06):
fascia in general?
I don't think we just, we justdon't know yet.
We're just not there.
Fascia's just so evolving.
I mean, the more I'm like tryingto stay on top of it, it's just
they're finding new cells nowand it's just interacting so
much differently than we thoughteven just years ago.
And so I'm, I think I'm excitedfor.
You know, you and I are talking,I'm going to the Fascia
(32:26):
Conference, but diving more intofascia and just staying on top
of the research with it, becauseif your fascia's restricted,
then your lymphatic system'sgonna be restricted, and then
you're gonna get morecompression in your pelvis, and
then when you get morecompression in your pelvis, I.
Can put more pressure on thenerves, add on constipation on
top of this, right?
(32:46):
You've got all of thesedifferent things.
So it's so multifaceted.
It's not like just nervoussystem.
Well, okay, yeah, just nervoussystem.
But now the nervous systeminteracts with fascia.
It's going to restrict thefascia.
Now the lymph can't flow, but ifyour nervous system is
restricted, then yourperistalsis and your gut's gonna
slow down.
So that's gonna, it's just like.
You know, now we have to thinkabout what's going on inside the
(33:08):
gut and what, what's the role ofthe, the microbiome and the
immune component in themicrobiome as well.
There's just a lot, a lot tothink about, but I think, and I
think like, so endometriosis isa surgical disease.
I don't care what anyone says.
You wanna try using birthcontrol to modulate symptoms,
fine, go ahead.
(33:29):
But it is, but you should knowit's a surgical disease.
So while it's a surgicaldisease.
All these other things are notnecessarily a surgical disease,
and you may never get to thatpoint on the road where you feel
amazing and awesome.
If we don't start to take eachlayer down individually, because
(33:50):
just treating one piece and nottreating the fascia, not
treating the pelvic floor, nottreating the hernia.
If you need to not restoringmobility to the spine, hey, not
maybe you need to be reallylooking at those feet like.
Not doing all these things is,is not, you may have excised the
endometriosis, but you're notgonna really, um, have the
(34:13):
person feel great in where theyare on their journey.
Well, yeah.
'cause it's, they're, if theirpelvic floor and their fasc is
restricted from the chronicpain, you remove the endo and
they still have pain, of coursethey're still gonna have pain
because too many just go backfor more surgery.
Yeah.
Well, that's my question thentoo is, you know, you're saying,
well.
Um, hey, you know, it's a, asurgical disease, but also at
(34:35):
what point will you just keepgoing in for surgery over and
over, you know?
I mean, there's that too becauseI, first of all, I typically
only work.
With excision, I don't do, andthis is a whole podcast in
itself, but ablation forendometriosis where they burn
off the top of the disease andleave the rest of the disease
(34:57):
behind is ineffective.
And so if you've had an excisionwhere you've taken the disease
out at its root, can it recur?
Yes.
Recurrence rates are lower, butit can recur, but.
Once you've done that goodexcision, it's time to start,
um, unlayering the onion as wetalk about instead of like, I
(35:22):
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, anever ending, um, cycle.
So like, I have excision, but Istill have ovary pain.
Right.
Even though I don't ev I don'tusually think that's your ovary.
It's always the nerve.
And it doesn't mean like, soyour second excision go in and
(35:42):
take out the ovary.
It means like.
Spend some time to, to do someof these things that we are
talking about.
Are there people that need to goback for surgery?
Yes.
Is it, is it something youshould be doing every two years?
Probably not.
Probably not.
Does it happen?
Yes.
I totally have patients that doeverything they can, and I think
(36:04):
that's where this concept thatthere may be different phenotype
of endometriosis, that's wherewe really need.
Better research to, to explorethat.
Well, if somebody hasn't heardof the endometriosis and the
diaphragm, can you explain that?
Because not everybody that'slistening is super familiar with
(36:25):
Endo.
I did do a podcast with Heather,so we did talk about excision
versus, um, ablation.
Now you and I know are by ourfirst name, but Heather Guidon
is really the, oh, sorry.
Random of all thingsendometriosis.
Um, and she's part of the Centerfor Endometriosis Care in
(36:45):
Atlanta, but diaphragmaticendometriosis, first of all, I'm
sure, um, in that podcast youdiscussed that endometriosis
doesn't spread endometriosis,um, is laid down when you're in
utero and then becomes reactiveso you can get.
Endometriosis, um, on the, whatI call the diaphragm side of the
(37:07):
diaphragm, um, as well asdiaphragmatic endometriosis on
the lung side and in, in thelung.
And by the way, I don't thinkit's particularly, um, rare.
There's a great organization byWendy Bingham, who is a pt, um,
extra pelvic, not rare, long,and diaphragmatic endometriosis
(37:27):
are, um, not rare at all, andthey'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 anyscans.
(37:48):
And most decent excision will.
Um, when they go in to do alaparoscopy, they will
immediately go and check thediaphragm.
That's how common endometriosisis on the diaphragm, and also
how common it is missed.
It's missed so often that now wehave to build it into the
(38:11):
surgical plan automatically.
Well, what do they do if it's onthe lungs though?
If it's on the lungs, and, and Iwould 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
(38:34):
into your lung.
They deflate one lung and theytake 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 doctorsdoing vats for lung
endometriosis.
Um, now I had.
(38:55):
Good story.
I had some, um, suspected lungendometriosis, and I, at those
time, at that time, this is, um,at least more than 12 years ago,
I chose to leave it because thetechniques weren't advanced
enough.
That the doctor, the thoracicsurgeon doing it couldn't
(39:18):
guarantee me I wasn't gonnaexperience a collapse just from
having the surgery when I workedout.
But the techniques have advanceda lot more.
Um, and it's, um, uh, thatparticular surgery is something,
um, that there are a lot betterresults with now.
But that one would probablyalmost be like a last resort,
(39:41):
right?
Oh, I don't think so.
If you are, we have greatdiaphragmatic and um, lung
endometriosis videos on theendometriosis summit.
YouTube really in depth, um, ifyou wanna learn about them.
But if you are somebody who has,um, a history of.
Lung collapse, particularlyduring menstruation, but it
(40:03):
doesn't have to be duringmenstruation.
Um, shortness of breath,difficulty taking a deep breath.
And there is any correlationwith your period.
It's definitely worth beinglooked up for, uh, worked up for
lung endometriosis and myexperience is.
(40:23):
That people who are symptomaticfrom the lung endometriosis,
unfortunately I couldn't nevermake that great a headway as a
physical therapist.
It is something that, um, peopledo have to go and go through the
vats if they're reallysymptomatic from it.
(40:44):
Hmm.
I, I now, then afterwards,there's a lot of work to the rib
cage and there's a lot of workto the sternum and there's a lot
of manual work, and there's allthese exercises I do with the
sheet.
And then yes, there's, there's arole for PT in lung
endometriosis, but if you'retruly symptomatic, I never made
any headway.
(41:05):
With any physical therapy or bysending, I used to have a great
acupuncturist who I would sendpeople to also, he never made
any headway.
And I, the long endometriosiscrowd, um, we try to, um, refer
through to vats to somebodythat's doing it all the time.
You don't want that guy who'slike, well, I could drive.
(41:26):
Sure.
I think it sounds good.
Yeah.
Well, I, I just, gosh, I justthink of.
Are, are you all working to getthis information into, into
physical therapy schools andmedical schools?
I mean, I, I saw wonderful.
Amazing.
I see Shannon Cohen, who is ofcourse the producer and director
of Below the Belt, and I seethat she has connected with the,
(41:51):
um.
Uh, a PTA and she's doing ashowing of below the belt, which
below the belt is this, um,groundbreaking film on
endometriosis.
Um, that has, has really becomean amazing, um, talking point
and educational tool.
And so I see her.
Broadcasting to the A PTA and Ithink that that's amazing.
(42:14):
I own the Endometriosis summit,um, and we are three days of
endometriosis education forsurgeons, patients, physical
therapists, caregivers, and anypractitioners.
We have a lot of mental healthproviders also, and we did offer
PT CEU this year.
Um, and.
We work hard.
(42:34):
I I, I mean, I, you're probablythe same way, like you call me,
I come and I've done many alecture in, um, PT schools,
especially by, um, zoom and Ithink I.
There's a lot of reasons why,um, now is the time for change
because a lot of change nolonger is gonna come through the
(42:57):
federal government, but changeis gonna come from the people,
um, themselves and maybe fromindependent funding.
But, um, you.
We have to keep working at it.
Um, and so many people that haveendo don't know they have endo.
Like that's the thing too, isthat's a whole nother animal,
(43:17):
you know?
Well, you should have, um, you,there's, um.
Radiologist who started her ownradiological society just for
endometriosis diagnosis.
Wendy Van Buren, she's, shewould be a, a great guest to
talk about that.
But the other thing is silent.
There's also silentendometriosis.
(43:38):
You can have.
No symptoms.
I don't believe it's nosymptoms.
I just believe no one is, um,correlating, really correlating
and listening to the way yoursymptoms are.
Like, I hate, so endometriosiscauses a ton of bladder symptoms
and I hate when somebody gets onthe phone with me for a consult
and they're like, yeah, I hadlike.
(44:00):
Three years of infertility andthen I've had a miscarriage and
I can't get any eggs out.
And my first question is, andwhat are your, you know, do you
go to the bathroom a lot?
And she's like, oh, but I drinka lot of water.
I do not wanna hear that yoururgency and your frequency is
'cause you're drinking a lot ofwater.
Because if you are having allthese fertility issues and then
(44:21):
you're telling me about urgencyand frequency.
That goes together or like, or,or you'll say like, are you
bloated And, oh, only if I amnot being perfect about my diet.
By the way, you shouldn't haveto be perfect.
I mean, don't sit around with,um, drinking diet Cokes and
eating twizzlerss, but youshouldn't have to be perfect
with your diet not to havepainful bloating.
(44:43):
Well, no, I think that's thething too, is symptom of
endometriosis.
Well, you can easily, and thisis something I've done, I've
just shamed myself when myperiods are bad,'cause I, oh
man, I shouldn't have eaten thatcupcake.
It's like everybody else can eata cupcake and they're fine, you
know?
And they're not having thesesymptoms.
But I think the thing thatfrustrates me is there's just.
(45:05):
Even in Texas is, you know,people can get imaging and then,
okay, so then they go in for alaparoscopic, but there, I have
so many people, it's like, well,where do we send them?
You know?
I mean, also imaging isnotoriously inaccurate for
endometriosis.
I know there are a lot ofadvances, um, and pelvic mapping
and imaging.
(45:25):
But, and the other thing is.
Laparoscopy, you could have noidea what you're really looking
for.
Yeah.
And miss, I see people everyweek that have had negative
laparoscopies.
And then if I cut, if our cliniccuts them open, they have a ton
of, of endometriosis, so like.
That's where, first of all,podcasts like this, where you
(45:47):
let people be honest matters,but that's where people like
Heather and people like myselfand people like Shannon and,
and, and, um, the advocates whoare using their voices to go
direct.
To the people.
Nancy Peterson, Kate Boyce ofEndo Girls blog, gener, uh, you
(46:08):
know, they're, these are peoplewho are using, um, their voices
on big platforms to go direct tothe, um, I don't wanna say
consumer, direct to the personbecause we can't rely on the md,
right?
They're, they're busy telling usto lose weight, or did we try
(46:28):
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 theendometriosis, fully excised,
and we have to do a better jobat getting out there.
And then the support will comefrom one day from, from
everybody.
That's like that endometriosissummit, that's its cornerstone
(46:51):
is like, we can't wait for youto educate us.
We're gonna do it.
Ourselves.
Well, my biggest thing is I feellike, uh, for the people, like
yes, if we're talking tohealthcare practitioners and
movement professionals here, butin general, people need to
understand their bodies so.
The more the people can educatethemselves.
So you know, I'll tell mypatients, I'll show them, Hey,
(47:13):
this is likely what's happening.
Your pelvis moves this way.
This is what your lymphaticsystem does.
So instead of just tellingpeople what to do, we need to be
educating them on why thesethings potentially are
happening.
So then they can start goingdown their own rabbit hole and
starting to do their research.
And I really think AI isactually gonna help with this.
Too.
'cause people are gonna startputting their symptoms in to
(47:33):
chat GPT and being like, what isthis?
You know?
And then with all the stuffyou're popping out, and I'm not
saying everybody needs to go tochat, right?
But then here's the thing, my,my friend is.
Has 9,000,001 symptoms plusendometriosis.
So she put exactly some symptomsinto chat, GPT, and she also has
Sally at her disposal, right?
(47:54):
So I'm like, what about this andwhat about this and what, and I,
and I serve at this time duringmy consultations as a sleuth,
like a chronic disease, sleuthsort of.
And um, what she learned fromTikTok.
Was that she shouldn't go intothe doctor and say, Hey, do you
think I have Hashimoto's?
(48:15):
Or do you think I have pots?
But she should go into thedoctor and pretend that she
knows nothing about what's wrongwith her.
And she never heard of chat GPTin the first place.
And lo and behold, 10 doctor'sappointments of not being heard,
but the one she goes into, andshe's like.
Oh, how does the thyroid work?
(48:37):
Oh, does that make you tired?
Like she doesn't know all that.
Meanwhile, she's head of a, likea medical marketing company.
She's not a stupid person, butlike.
Like, you have to sort of likefake it and pretend like you're
not this active, engagedpatient.
That's the appointment sheactually got help in.
And, and, and that still existsin many ways.
(49:00):
It is slowly changing in women'shealthcare, but like, I
personally feel like women'shealth.
I've talked to people in thelast week, they have to bring
their husband or nobody listensto them.
Like, it, it, yeah.
I mean it's, it's, it's 2025.
We shouldn't.
And, and, and it shouldn't stillbe like that, you know?
But it is, it is.
(49:20):
It's so, it's like, okay.
And I'm not saying chat GPT isthe only ai.
I just think as AI startsevolving, 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.
(49:42):
Of imaging and endometriosis.
Mm-hmm.
Um, and, and also of the hiddenhernias, which is how we started
here.
And they're taking likethousands of MRIs that are
properly read by specialist, bypeople who know how to pelvic
map and plug them into theseprograms to get, um, better
maps, particularly for surgery.
(50:03):
And I'm interested to see whatthe next 10 years of that is
because.
A radiologist can, there's nofault to them.
They can only look for whatthey're trained to look for.
And could we, are we able totrain the AI maybe a little
better?
Oh yeah, totally.
I think so.
And it's just, it's just fromunderstanding those learned
(50:26):
language models and how itworks, it's just so much just
pumping the data and it's justgonna take so much data for it
to start to learn.
But.
Yeah, it's gonna be crazy.
I'm ex, I mean, I'm lookingforward 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 bestpsychotherapist I ever had was
ai.
I know.
I'm like, chat GPT.
Are you like my, my partner now?
(50:47):
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 forbeing on.
If people, I, I'll put theendometriosis summit, um, on the
podcast here.
Is there anywhere else you'dlike them to follow you or reach
out?
Uh, they could.
(51:08):
Find us on Instagram atEndometriosis Summit and we'd
love you to join us in Orlando.
I know it's far away, but March27, 28, 29, 20 26.
And that is also held virtually.
Um,and@theendometriosissummit.com
(51:28):
you can always join the mailinglist and we'll see you there.
Perfect.
Well, thank you so much.
Take care.
Thank you so much for listeningto my podcast.
It would be a huge help if youcould subscribe and rate the
podcast.
It helps us reach more peopleand make a bigger impact.
I would also love it if youcould join my email list, which
(51:48):
is LinkedIn, the caption forpodcast updates, upcoming offers
and events.
You can also find me on TikTok,YouTube and Instagram at Dr.
Mary pt.
Thanks again.
Hello.
(00:00):
Welcome back to TMI talk withDr.
Mary.
I'm your host, Dr.
Mary.
In this episode, I brought onDr.
Sally Rell to talk about thehidden layers of pelvic pain
that often get dismissed,misdiagnosed, or misunderstood.
I.
A little bit about Dr.
Sally Rell.
She is a pelvic floor physicaltherapist and a person with
endometriosis.
(00:21):
After it took 23 years of sheerfrustration with the medical
system, Sally created a practiceto be a safe haven for all
people with endometriosis andits associated disorders.
Together with Dr.
Andrea Vidali, she has foundedthe Endometriosis Summit to
unite surgeons, patients,practitioners, and caregivers to
(00:44):
help drive the endometriosismovement forward.
She has a passion for treatingpeople with endometriosis that
also have leg bladder and groinpain.
She also gives a voice to allwho struggle with endometriosis
and adenomyosis.
She reminds the endometriosiscommunity that you are worthy,
and together you can ignitechange.
(01:06):
So in this episode, we're gonnadig into.
What an occult hernia is and whyit's often missed on imaging.
Why so many people are toldtheir groin pain or
endometriosis, or just theirovary when it's not the role of
the ileal, andal, and genitalfemoral nerves in chronic pelvic
pain.
(01:26):
We also address why we thinksomething might be a yeast
infection, when it couldactually be nerve compression
causing itching in the area.
Why your feet, fascia, anddiaphragm might be contributing
to your, the pelvic floorsymptoms or pelvic pain.
Why misused medical language cannegatively affect a patient's
(01:48):
healing and their outlook ontheir prognosis.
The role of the thoracic spineand mobility, gait and lymphatic
system and nervous systemregulation and how it all
affects pelvic pain.
And finally that be being apelvic floor physical therapist
doesn't necessarily mean we'reone trick ponies and just using
(02:09):
internal treatments for theentire session.
We have such a vast skillset andthe ability to help people with
pelvic pain.
So even if you're a.
Physical therapist orchiropractor, or a movement
professional, you can learn alot from what we're gonna be
talking about today because somuch of our focus is not on the
(02:29):
internal treatments, but moreabout looking at the person as a
whole.
So without further ado, we'lljump into this episode.
Welcome back to TMI talk withDr.
Mary where we dive intonon-traditional forms of health
that were once labeled as tabooor dismissed as Woo.
I'm your host, Dr.
Mary.
I'm an orthopedic and pelvicfloor physical therapist who
(02:51):
helps health.
Movement and rehab professionalsintegrate whole body healing by
blending the nervous system intotraditional biomechanics to
maximize patient outcomes.
I use a non-traditional approachthat has helped thousands of
people address the deeper rootsof health that often get
overlooked in conventionalwestern training.
And now we are gonna be startingour next episode.
Audio Only - All Partic (03:13):
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 justchatting for 30 minutes before.
Well, who knew?
I found like, uh, a missingpiece of me over there in Texas.
Yeah.
Oh my gosh.
I feel like we could talk forhours, especially with Heather
(03:34):
too.
I mean, the three of you.
Well, Heather's the best.
Y'all are great.
Um, okay, well, we'll just goahead and jump right in and, uh,
yeah.
So from your clinical lens, whatpatterns or patient
presentations make you consideran occult hernia?
Even if I imaging comes backclear, I.
The biggest pet peeve I have inanyone with pelvic pain or
(03:57):
endometriosis is when they taketheir finger and they point to
their pelvis where they thinktheir ovary is and it isn't
really their ovary, and thenbecause they think it's their
ovary, they go to thegynecologist.
And the gynecologist has no ideawhat a nerve or what a vein or
what fascia is and goes, must beyour ovary.
(04:18):
I don't see a cyst, so we'lljust take out the ovary.
And to me that is a frustratingsituation because there is a
series of nerves there, but thebiggest nerve in particular is
the ileal inguinal nerve.
And um, that is going to causethat lower quadrant.
Pelvic pain that, um, radiatessometimes into your pubic bone,
(04:43):
which means it's accessing adifferent nerve, the genital
branch of the genital femoralnerve, and then down into your
leg and thigh, and sometimeseven you'll get some pain into
the inside of your knee.
And those are presentations, inmy opinion, that should be
looked into for occult hernia.
(05:05):
What is AOC Cult hernia?
Is that your next question,Mary?
Yes.
Explain to everybody what culhernia is.
So I really, uh, changed thename to Hidden Hernia.
Um, but, and AOC Cult Hernia isnot necessarily a full blown
hole through the peritoneum,like a normal, everyday more
(05:27):
common.
Hernia is, it is more likely tobe a, um, compression of fat.
Not fat like your fat, but fatthat is native to the body
that's found in, um, sometimeswhat's the pre peritoneal space
or found sometimes in theinguinal canal and it's laying
(05:49):
against.
Um, this nerve really creating,um, pain along the, um, nerves,
the ileal andal nerve, and oftenthe genital branch of the
genital femoral nerve.
And that particular type ofhernia is not often spotted on
(06:10):
MRI or CAT scan because moreoften than not.
The radiologist is trained tolook for the full-blown hole and
is not necessarily looking forthe fat compression to the
nerve.
And so what happens is peoplewill do things like, I had the
ovary out, I.
(06:31):
And I still have the pain.
Yeah.
And now you don't have an ovaryand you could go into menopause
early and early.
Menopause is connected withthings 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 theyhave this pain and, um, nothing
(06:55):
has helped it.
Uh, and yet scans are negative.
And some, some people will evensay that they've had laparoscopy
for endometriosis and nobody sawanything, be it endometriosis.
Or a hernia.
And that's because the hernia isnot viewable at the same time
typically, unless you arespecifically looking in this
(07:17):
area of the body as, um, whenyou do the endometriosis
surgery.
So what would be the typical wayfor them to diagnose it?
Um, it is very possible to see ahidden hernia on MRI or CAT
scan.
If you are reading it right now,here becomes the problem.
I really only trust two peoplein the United States to read
(07:39):
them.
Um, luckily both of these peopledo, um, virtual reads.
Um, and I think the otherproblem is.
That not everyone will operateon them either, so that's why I
send people to specialists.
Actually, I would say there'sthree specialists that I would
(08:00):
send to, but like think of howmany people are in the US that
have this pain.
Think of how many people youtalk to on a daily basis that
go, my ovary hurts and really.
We're not paying enoughattention to the nerve that lays
in the space that people thinkis their ovary.
(08:21):
Now, will the hernia hurt duringmenstruation and during
ovulation?
You betcha.
Because there's inflammation inthe area, so people will go.
Oh, when I ovulate, it'sterrible.
Must be a cyst.
Must be endometriosis.
No, you very much can havedysfunction to this nerve.
(08:42):
Um, that hurts during ovulation,and that hurts during
menstruation.
That is not related to eitherovulation or menstruation.
But even like from a physicaltherapy perspective, a rehab
perspective, I meangenitofemoral.
And then in that area, you'regonna get referral from like T
12 to L two.
Uh, say somebody doesn't wannahave surgery or maybe they don't
(09:04):
have access to the people thatyou're talking about, you know,
we're both PTs, so you wouldRight, right.
Like, what are you thinking fromthat standpoint?
I.
I start with the spine justlike, because we established on
the part of the phone call thatwasn't recorded, that we, um,
somehow belong together in thisworld.
(09:24):
So, but I start with the spineand I think about where do these
nerves originate, right?
And so if you can, of course youcan look at T 12 really to about
L four to cover, um.
Both the, um, general branch ofthe general femoral nerve, but
also to cover the i inguinalnerve.
(09:45):
And then I think because theileal inguinal nerve wraps
around, there's a lot ofmyofascial work that can be done
on the external and internalobliques and, um, on in some
ways range of motion itself, uh,in rotation.
Um, but here's my other issueand I have seen techniques to,
(10:08):
um, floss those nerves.
And basically, um, you look atthe way the nerve runs, you can
open any anatomy book that youhave and you move the person in
the direction of the nerves andthen you can gently like, sway
them.
I usually go, um, directly inthe direction of the nerve
(10:29):
versus not.
Going in the opposite direction.
'cause that's like breaking downa barrier.
But the other piece is for many,myself included, because I had
one of these.
All those techniques in theworld may not be helpful, and
some people do have to manage,um, the hidden hernia by
(10:51):
removing the nerve compression.
And if you're in that populationand you choose to go through
that surgery, it can change yourlife.
Immeasurably because you'venever probably realized how much
that pain affected you.
Um, it's just like, you know,endometriosis.
(11:12):
Um, most people who have anendometriosis, who never had an
excision don't realize how muchtheir life changes when they
have an excision because theydon't realize how much, um,
they're being held back.
But the other thing is, ifyou're dealing with groin pain
in it and someone withendometriosis, especially on the
right, on the right, you have toalso remove the appendix because
(11:32):
so many people, even without itvisible at the time of surgery,
have groin pain from.
The appendix.
But if you also have the herniaon top of that, then you really
have groin pain.
And so you play this game oflike, well, what do I do first?
So like most of the time we havepeople, like if you have
(11:52):
endometriosis and you have oneof these, um, one of these
hidden hernias.
We do the excision first andthen, and then we see.
Because if you take down all theinflammation from the
endometriosis, maybe I have, um,I have techniques direct to the
ileal inguinal nerve itself.
That's like a myofascial, likestrumming almost.
(12:16):
But it's not really strumming'cause it's not.
Aggressive where you're workingalong the nerve on somebody's
abdomen.
You're, the other thing is itcan be very helpful if you dry a
needle.
You may be able to dry needlethat area.
You may be able also to, um,manage it.
I work with people who sometimescan do, not necessarily a
(12:40):
steroid injection, but um, theydo a tial injection, which is a.
Um, herbal anti-inflammatorydirectly into the nerve as well.
Um, and that may be enoughwithout having surgery, but if
your patients choose to havethose nerve injections, they
should see you like within thenext.
(13:00):
Um, within the next 24 hoursbecause 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 Somuch I.
I cannot believe how much wedon't look at the feet with the
(13:23):
pelvis.
It is astronomical how, I mean,it's, it's not astronomical,
that's not the right word, butit's just astonishing how little
we look at the feet, or at leastwhat I've seen, um, in my
experience.
In, in the pelvic healthcommunity is just only focusing
just on the pelvis.
Like it's, it's treating thearea, like you said, just kind
(13:43):
of locally.
The way I explain it is we treatlocally, treat the pain, treat
the source of the pain, but thenyou treat the Y.
Is it the foot pronating that'smaking it worse?
Is it that we're not gettingthoracic rotation because maybe
we're not pushing off duringgait because we're walking in a
different pattern.
Maybe we altered our gaitbecause of an injury five years
ago, or something along thoselines is.
(14:05):
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 Participant (14:10):
in the, in,
mary (14:11):
in pelvic health
Audio Only - All Partic (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, andwe're just go, go, go, go, go.
We're not breathing through ourdiaphragm.
Which then affects our lymphaticsystem.
Now add lymphatic system to thepelvis.
Now add on constipation.
Now you've got a cluster of shitall hanging out there.
(14:34):
Well, think about the diaphragmin a number of ways, especially
with our pelvic pain population.
First of all.
Our pelvic pain peeps oftentimesare hunched over a little bit,
or they're guarding their pain.
What's the, and their musclethey're gonna guard with
unfortunately, is theirdiaphragm.
They're gonna use theirdiaphragm as a postural mu
(14:55):
muscle, and then.
Um, that it's not going to workthe way it should, which is
gonna change, um, thoracicrotation.
But Mary, think about somethingelse.
When they do surgery on, yousuppose that somebody's had
multiple surgeries.
Um, when you have anesthesia, itchanges the way the diaphragm
(15:17):
works because it has to.
Right?
But for endometriosis surgery,they tip you back.
Because they have to insufflatethe belly with, um, gas so that
the organs fall away from, um,the abdominal wall and such so
that they can really search forendometriosis.
So they tilt back like theirpelvis is up and then their
right upper.
Audio Only - All Particip (15:37):
Right now.
Okay.
If, if they're doingspecifically, which I was gonna
get to in the next sentence, butif they're doing specifically
diaphragmatic endometriosis,they tip you the other way
because then you Right.
Okay.
But hold please.
On the diaphragmaticendometriosis.
When they tip you back in manypatients, that's going to change
(15:58):
the way our excursion is.
When we wake up from, you know,things that you need physical
therapy for, that's going tochange thoracic mobility.
Then, uh, when you have surgery,you don't like to take a deep
breath in or turn side to sidebecause it hurts like hell, and
that changes the way your brainconnects to your thoracic spine.
So you're missing that a littlebit.
(16:20):
And then the real issue becomes.
What about, um, diaphragmaticand um, lung endometriosis and
how is that fully impacting thesystem as well as, um, what is
the role of the vagus nerve inall this?
So you have all that with thethoracic mobility and then with
(16:41):
the foot.
I see that all the time becauseI do groin and hip pain in
relation to, um, pelvic pain andendometriosis and.
The person goes in to youroffice and maybe you've gone
outside to wash your hands, likemy sink was in another room, so
I would go outside to wash myhands.
When I came back, the personwould already be on the table,
(17:04):
usually whether I ask them to ornot, and then they're lying
down.
So a lot of people don'trealize.
That it starts from the groundup and I need to start the
physical therapy session.
I gotta look at, um, the wayyour, um, feet are working.
I gotta look at the way yourhips are working.
(17:25):
I have to look at how yoursternum is moving when you're in
standing.
And of course your head andneck.
And so there, and, and if youtalk about fascial lines, then
we really gotta talk about thefeet and thoracic rotation.
So.
Lots of issues and, and then Ihad the privilege of being a
(17:45):
non-insurance taker, and so if Iwanted to look at somebody's
foot, that's no problem becauseI don't care what the code says.
If you are in a big clinic andyour code says pelvis, sometimes
it's very hard for them to standup a patient and start working
on the foot or the ankle or thecalf, right?
(18:08):
Lots of fascia in the calf.
And I think, you know, we havechallenges in the way our, um,
medical system is see issue, fixissue.
When it's not fix issue, it'streat whole person.
Well, I worked in Nsurance modelfor seven years and I still
treated like whole body.
(18:30):
I would just justify it in thenote.
And so how much of it is thatwe're not justifying it in the
note because, and I don'tremember having any issues with
billing.
Once I justified it in the noteand being like, Hey, as they do
this, he'll, you know, theirlack of push off during gait.
So it's limiting their, youknow, their pelvis from
rotating.
So thoracic spines beinglimited.
(18:51):
So I also feel like there's apiece of, yeah, insurance can
say that, but if you'rejustifying it in the note, why
is that an issue?
And I was in that for sevenyears and I did that.
I think it's gotten a lot.
Dicier has it.
I mean, I've been out now sevenyears outside of, I think we've.
Look, I, I am not someone whowas rah rah insurance, but we
(19:15):
shot ourselves in the foot as aprofession when we allowed an
insurance company to determineour worth and our worth when we
treat the whole person.
Is that documentation thatyou're talking about that you
see a change in heel off that'saffecting the pelvis and
(19:36):
thoracic rotation?
We are trained for that.
And unfortunately in manystates, and it differs from
state to state, the insurancecompany is dictating what you
can do rather than the trainingthat you have.
Now, the other thing is how manyof our PTs listening are in
(19:57):
states where the PT is onlydoing the eval and the PTA has
to.
Execute everything, and Ibelieve that every single day,
every single session you see apelvic pain, endometriosis, or
even groin pain patient.
Every session is differentbecause there's an element of
eval for everything, but that'sbecause I'm a pt and I think a
(20:19):
lot of our PTAs are verychallenged by that also, that
the system is very hard forthem.
Well, I think that that goesback to, you know, what we were
talking about earlier, likelooking all the way up the chain
is, well, why are we soseparated?
I, I feel like our industryneeds to step up.
I mean, I think it's, it's hardbecause the industry is
(20:42):
dictating, right?
So then if you're coming out asa new grad and you're told, Hey,
only treat the pelvis, you'reonly gonna treat the pelvis and
you're gonna think just likethis in this.
Small, narrow lens.
Now that affects the quality ofphysical therapy across the
board.
What I have seen even in cashpractices here in Austin, that
(21:03):
people do internal treatmentsfor the hour.
For the whole hour.
Can you imagine?
No, this is not, I mean, I havepelvic pain, endometriosis and
hernias, and I could not do anhour.
I mean, I physically could notendure that.
No, they're literally like, it'sliterally like, it's, it's
something where it's like amajority of the session is
internal.
This has been normalized.
(21:24):
This is really messed up becauseI also believe that, and, and
our people out there listeningshould understand that pelvic PT
does not always mean stickingyour finger inside someone.
That the internal is one tool inthe toolbox, but there's 500
things.
Plus in that toolbox.
And we are not always doinginternal work.
(21:45):
And there are people who can'ttolerate internal work at all.
And we doing tons of progress.
And I think the pandemic taughtus that because we were treating
people, um, virtually well, I'vealso had it too, where people,
they go in and they're gettingtreated internally for that
whole time, but nobody looked atthis tissue, the skin, and it
was a dermatological issue.
(22:06):
Yeah.
Was it pH I find that also, youknow, our topic was supposed to
be groin pain, but I mean, itall goes together.
It goes together because I'mright.
I find that in the, um, in themissed hernia realm because
people think that anythingvulvar is pudendal.
(22:26):
It's all, oh yeah.
It's pudendal.
And they don't realize, and Iused to take out, um, I used to
map the nerve.
Right.
And there's a portion of thelabia that's ilioinguinal and
the, what's the portion of thepubic bone?
That's genital femoral and, andpeople don't realize, like,
(22:47):
first of all, they think theyitch.
It has to be yeast.
No.
If you sit on your foot for along time and your foot falls
asleep, the pins and needles canbe interpreted as itching.
So if you have a nervecompression in your pelvis.
That's the itching.
So stop taking the yeastinfection medication unless you
(23:07):
swab for it each time, becausethat's an indication that
there's a nerve issue.
Also, when they say burning, I'mlike, yeah, that's not your
urine.
That's, I mean, unless they havean active infection.
But after ruling that out.
That a lot of times is a nerveissue and then like it's not all
pudendal.
(23:27):
And we of course could have theconversation of just because the
script 15 years ago saidpudendal neuralgia'cause the
doctor didn't know what to writeon the script.
Does not mean you have to liveyour life in the box, that you
could only have this one thing.
And that's what I find I seewith the people with
endometriosis is you haveendometriosis, you've had a
(23:49):
horrendous time being diagnosedwith endometriosis, but
endometriosis also comes withlike 18 other things, and we
can't only think of you as aperson with endometriosis.
We have to think of you as awhole person.
Who needs all those thingsattended to from mental health
to diet, to pelvic andoccupational physical therapy,
(24:10):
we have to start treating youand treating everything instead
of you just going because theyhave endometriosis.
'cause like your lower quadrantpain may not even be related to
your endometriosis and you don'thave to have that pain and groin
pain to move forward in yourlife.
Well, I also think that you justtapped on something.
(24:31):
It's like the language thatwe're using with patients
because, oh my gosh.
The amount of stuff that we haveto be so careful when we're
talking about people's bodiesbecause, you know, I just had
somebody the other day come intheir, their practitioner told
them they have a spine of an80-year-old.
You know, and so then peoplehold that in their head forever.
(24:53):
Forever.
Well, Jason sure has a wholelecture on that.
We did it at the Endo Summit,but we call it words Matter.
But yeah, the other thing I hateis people go to me.
Oh, I had an MRI.
You should see what my spineshowed on MRI.
I don't.
I mean, I don't wanna say itlike totally, but I don't really
give a fuck what the MRI showed.
(25:15):
If you're gonna show, oh, I havea bulging disc, like a bulging
disc is another box for you togo sit in, because I would say
80% of the time that bulgingdisc is not.
Um, the stop point for yourissues.
And also we know now the thingsthat you see in that MRI tube,
(25:35):
um, in regards to your spine.
I'm not talking about everywhereelse, I'm just talking about the
spine.
Don't necessarily, there are notsuch 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 painbecause I have great mobility of
the rest of my spine.
I make sure I'm strong in mycore.
(25:58):
I make, and core, by the way,also includes the diaphragm.
It also includes in some waysthe ribs and the scalings.
Right?
It's not, and and I think towe're.
Especially when you have complexissues, you are pushed so far
that any little in informationthat you get becomes something
to grab onto.
(26:19):
And we don't want you, um, toonly define what's going on by
that.
Well, I think, you know, ifwe're talking to practitioners
and it's, and you hear patientssaying, well, I have endo, or I
have this, or like identifyingwith it, that is a yellow flag
to help that patient maybereframe also how they are,
(26:41):
they're speaking because.
That's then you're limitingyourself from everything.
I know that I've had it wherebefore I was diagnosed with Endo
and I was going through allthese different things about
chronic fatigue and nobody knewwhat was going on.
And you know, like you said,endo comes with a bunch of other
diagnoses, which you're alreadythinking you're crazy'cause
you've got all these otherthings going on too.
(27:03):
And in that, just being awareof, if I, when I stayed in the
victim mentality of, oh no, Ican't do these things because
I'm in pain, or like I have thisdisease or I have this, then you
limit the rest of your life andit almost perpetuates the
chronic pain.
'cause then your nervous systemis on more high alert because
you're not doing anything, butyou're dwelling on the pain
(27:24):
itself.
So there's this balance betweenrecognizing and respecting, Hey,
I have this, but also I am ahuman and it's not my identity.
Right.
I, and I also think likediagnosis.
Like you were saying, dependingon how it's presented to the
person, right, can be veryempowering.
(27:44):
So for example, I have pots andso for years I wanted to know
why my heart rate was high.
Am I just like a fatty on thetennis court?
'cause my heart rate is so highyet?
I'm pretty well trained,cardiovascularly, and knowing
that I had POTS was not like,okay, uh, this is why I can't
(28:06):
achieve I have pots.
It was, this is why I have tohydrate the night before.
This is why I need salt in thewater, and this is why it's okay
to say to the person next to me,we're gonna take.
Like bounce that ball a lotbetween points because I have to
let my heart rate drop.
And so there's a way when you'rea medical practitioner to
(28:28):
present diagnosis, that'sempowering.
And then there's a way thatpresents it where it's, uh.
Traumatic for your centralnervous system.
And it'll be interesting to seehow, um, as we move forward with
lots of work on our centralnervous system and, and work in
(28:50):
the research on that, how, howthat may change.
Yeah, it's, it's, it's reallyhard when somebody's so
connected to their diagnosisbecause.
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, areally bad spell of pots when I
(29:11):
was 18 after mono.
And that's kind of wheneverything kind of Me too.
Yours was too, yeah.
That's what triggered it all.
Yeah, I had, I couldn't get outof, I could hardly get outta bed
for a year in my first year ofcollege or like that last nine
months of college.
Didn't know what was going on.
Um, I was told to just pushmyself harder, so I tried to
exercise and I'd flare up,developed, um, what is it?
(29:35):
Uh, post exertional malaise wastold that I was crazy basically.
And it's not until like the lastcouple years I was like, oh my
God, I had pots.
And I think it's still likelingering.
It's not to the degree that itwas, but it's fascinating to
right.
I also how endometriosisinterplays with the nerves and
the veins and the arteries inyour pelvis.
(29:56):
And in my case, that was very,very significant.
We didn't know that until I was35, but that changed.
I.
A lot on how my pelvis worked.
And um, I think the role ofthat, and if you're, you have
frozen pelvis, we really can'ttell if it's just, um, a venous
(30:19):
issue or if the venous issueactually 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 manypeople because these things are
there our whole lives.
But then I think they gettriggered, you know, well, if,
(30:39):
think about it.
Endometriosis is laid down whenyou're in utero and then becomes
hormonally reactive.
If you go through, if I wentthrough my history, for sure, I
had it in my teens, and thenlike the doctor minimizes you
until you normalize it and thenyou end up like being so ill
that you have 9 million otherdisorders.
(31:02):
I think that's usually whathappens with endometriosis.
This is the first time I'vecourt like I.
I mean, it makes sense why potsand endo would go together.
I don't know why I hadn't.
Yeah, we, we have to explorethat more at the endometriosis
summit.
We had, um, Dr.
Brooke Spencer this year, we'relooking towards having her, um,
next year as well.
(31:23):
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 situationworse?
(31:45):
Um, and how about for those ofus with diaphragmatic
endometriosis?
That for sure is changing yourvenous system.
Um, and I think.
It makes a bad situation worserather than, it's a huge, um,
component of it now.
Can we say like, what is therole of connective tissue and
(32:06):
fascia in general?
I don't think we just, we justdon't know yet.
We're just not there.
Fascia's just so evolving.
I mean, the more I'm like tryingto stay on top of it, it's just
they're finding new cells nowand it's just interacting so
much differently than we thoughteven just years ago.
And so I'm, I think I'm excitedfor.
You know, you and I are talking,I'm going to the Fascia
(32:26):
Conference, but diving more intofascia and just staying on top
of the research with it, becauseif your fascia's restricted,
then your lymphatic system'sgonna be restricted, and then
you're gonna get morecompression in your pelvis, and
then when you get morecompression in your pelvis, I.
Can put more pressure on thenerves, add on constipation on
top of this, right?
(32:46):
You've got all of thesedifferent things.
So it's so multifaceted.
It's not like just nervoussystem.
Well, okay, yeah, just nervoussystem.
But now the nervous systeminteracts with fascia.
It's going to restrict thefascia.
Now the lymph can't flow, but ifyour nervous system is
restricted, then yourperistalsis and your gut's gonna
slow down.
So that's gonna, it's just like.
You know, now we have to thinkabout what's going on inside the
(33:08):
gut and what, what's the role ofthe, the microbiome and the
immune component in themicrobiome as well.
There's just a lot, a lot tothink about, but I think, and I
think like, so endometriosis isa surgical disease.
I don't care what anyone says.
You wanna try using birthcontrol to modulate symptoms,
fine, go ahead.
(33:29):
But it is, but you should knowit's a surgical disease.
So while it's a surgicaldisease.
All these other things are notnecessarily a surgical disease,
and you may never get to thatpoint on the road where you feel
amazing and awesome.
If we don't start to take eachlayer down individually, because
(33:50):
just treating one piece and nottreating the fascia, not
treating the pelvic floor, nottreating the hernia.
If you need to not restoringmobility to the spine, hey, not
maybe you need to be reallylooking at those feet like.
Not doing all these things is,is not, you may have excised the
endometriosis, but you're notgonna really, um, have the
(34:13):
person feel great in where theyare on their journey.
Well, yeah.
'cause it's, they're, if theirpelvic floor and their fasc is
restricted from the chronicpain, you remove the endo and
they still have pain, of coursethey're still gonna have pain
because too many just go backfor more surgery.
Yeah.
Well, that's my question thentoo is, you know, you're saying,
well.
Um, hey, you know, it's a, asurgical disease, but also at
(34:35):
what point will you just keepgoing in for surgery over and
over, you know?
I mean, there's that too becauseI, first of all, I typically
only work.
With excision, I don't do, andthis is a whole podcast in
itself, but ablation forendometriosis where they burn
off the top of the disease andleave the rest of the disease
(34:57):
behind is ineffective.
And so if you've had an excisionwhere you've taken the disease
out at its root, can it recur?
Yes.
Recurrence rates are lower, butit can recur, but.
Once you've done that goodexcision, it's time to start,
um, unlayering the onion as wetalk about instead of like, I
(35:22):
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, anever ending, um, cycle.
So like, I have excision, but Istill have ovary pain.
Right.
Even though I don't ev I don'tusually think that's your ovary.
It's always the nerve.
And it doesn't mean like, soyour second excision go in and
(35:42):
take out the ovary.
It means like.
Spend some time to, to do someof these things that we are
talking about.
Are there people that need to goback for surgery?
Yes.
Is it, is it something youshould be doing every two years?
Probably not.
Probably not.
Does it happen?
Yes.
I totally have patients that doeverything they can, and I think
(36:04):
that's where this concept thatthere may be different phenotype
of endometriosis, that's wherewe really need.
Better research to, to explorethat.
Well, if somebody hasn't heardof the endometriosis and the
diaphragm, can you explain that?
Because not everybody that'slistening is super familiar with
(36:25):
Endo.
I did do a podcast with Heather,so we did talk about excision
versus, um, ablation.
Now you and I know are by ourfirst name, but Heather Guidon
is really the, oh, sorry.
Random of all thingsendometriosis.
Um, and she's part of the Centerfor Endometriosis Care in
(36:45):
Atlanta, but diaphragmaticendometriosis, first of all, I'm
sure, um, in that podcast youdiscussed that endometriosis
doesn't spread endometriosis,um, is laid down when you're in
utero and then becomes reactiveso you can get.
Endometriosis, um, on the, whatI call the diaphragm side of the
(37:07):
diaphragm, um, as well asdiaphragmatic endometriosis on
the lung side and in, in thelung.
And by the way, I don't thinkit's particularly, um, rare.
There's a great organization byWendy Bingham, who is a pt, um,
extra pelvic, not rare, long,and diaphragmatic endometriosis
(37:27):
are, um, not rare at all, andthey'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 anyscans.
(37:48):
And most decent excision will.
Um, when they go in to do alaparoscopy, they will
immediately go and check thediaphragm.
That's how common endometriosisis on the diaphragm, and also
how common it is missed.
It's missed so often that now wehave to build it into the
(38:11):
surgical plan automatically.
Well, what do they do if it's onthe lungs though?
If it's on the lungs, and, and Iwould 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
(38:34):
into your lung.
They deflate one lung and theytake 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 doctorsdoing vats for lung
endometriosis.
Um, now I had.
(38:55):
Good story.
I had some, um, suspected lungendometriosis, and I, at those
time, at that time, this is, um,at least more than 12 years ago,
I chose to leave it because thetechniques weren't advanced
enough.
That the doctor, the thoracicsurgeon doing it couldn't
(39:18):
guarantee me I wasn't gonnaexperience a collapse just from
having the surgery when I workedout.
But the techniques have advanceda lot more.
Um, and it's, um, uh, thatparticular surgery is something,
um, that there are a lot betterresults with now.
But that one would probablyalmost be like a last resort,
(39:41):
right?
Oh, I don't think so.
If you are, we have greatdiaphragmatic and um, lung
endometriosis videos on theendometriosis summit.
YouTube really in depth, um, ifyou wanna learn about them.
But if you are somebody who has,um, a history of.
Lung collapse, particularlyduring menstruation, but it
(40:03):
doesn't have to be duringmenstruation.
Um, shortness of breath,difficulty taking a deep breath.
And there is any correlationwith your period.
It's definitely worth beinglooked up for, uh, worked up for
lung endometriosis and myexperience is.
(40:23):
That people who are symptomaticfrom the lung endometriosis,
unfortunately I couldn't nevermake that great a headway as a
physical therapist.
It is something that, um, peopledo have to go and go through the
vats if they're reallysymptomatic from it.
(40:44):
Hmm.
I, I now, then afterwards,there's a lot of work to the rib
cage and there's a lot of workto the sternum and there's a lot
of manual work, and there's allthese exercises I do with the
sheet.
And then yes, there's, there's arole for PT in lung
endometriosis, but if you'retruly symptomatic, I never made
any headway.
(41:05):
With any physical therapy or bysending, I used to have a great
acupuncturist who I would sendpeople to also, he never made
any headway.
And I, the long endometriosiscrowd, um, we try to, um, refer
through to vats to somebodythat's doing it all the time.
You don't want that guy who'slike, well, I could drive.
(41:26):
Sure.
I think it sounds good.
Yeah.
Well, I, I just, gosh, I justthink of.
Are, are you all working to getthis information into, into
physical therapy schools andmedical schools?
I mean, I, I saw wonderful.
Amazing.
I see Shannon Cohen, who is ofcourse the producer and director
of Below the Belt, and I seethat she has connected with the,
(41:51):
um.
Uh, a PTA and she's doing ashowing of below the belt, which
below the belt is this, um,groundbreaking film on
endometriosis.
Um, that has, has really becomean amazing, um, talking point
and educational tool.
And so I see her.
Broadcasting to the A PTA and Ithink that that's amazing.
(42:14):
I own the Endometriosis summit,um, and we are three days of
endometriosis education forsurgeons, patients, physical
therapists, caregivers, and anypractitioners.
We have a lot of mental healthproviders also, and we did offer
PT CEU this year.
Um, and.
We work hard.
(42:34):
I I, I mean, I, you're probablythe same way, like you call me,
I come and I've done many alecture in, um, PT schools,
especially by, um, zoom and Ithink I.
There's a lot of reasons why,um, now is the time for change
because a lot of change nolonger is gonna come through the
(42:57):
federal government, but changeis gonna come from the people,
um, themselves and maybe fromindependent funding.
But, um, you.
We have to keep working at it.
Um, and so many people that haveendo don't know they have endo.
Like that's the thing too, isthat's a whole nother animal,
(43:17):
you know?
Well, you should have, um, you,there's, um.
Radiologist who started her ownradiological society just for
endometriosis diagnosis.
Wendy Van Buren, she's, shewould be a, a great guest to
talk about that.
But the other thing is silent.
There's also silentendometriosis.
(43:38):
You can have.
No symptoms.
I don't believe it's nosymptoms.
I just believe no one is, um,correlating, really correlating
and listening to the way yoursymptoms are.
Like, I hate, so endometriosiscauses a ton of bladder symptoms
and I hate when somebody gets onthe phone with me for a consult
and they're like, yeah, I hadlike.
(44:00):
Three years of infertility andthen I've had a miscarriage and
I can't get any eggs out.
And my first question is, andwhat are your, you know, do you
go to the bathroom a lot?
And she's like, oh, but I drinka lot of water.
I do not wanna hear that yoururgency and your frequency is
'cause you're drinking a lot ofwater.
Because if you are having allthese fertility issues and then
(44:21):
you're telling me about urgencyand frequency.
That goes together or like, or,or you'll say like, are you
bloated And, oh, only if I amnot being perfect about my diet.
By the way, you shouldn't haveto be perfect.
I mean, don't sit around with,um, drinking diet Cokes and
eating twizzlerss, but youshouldn't have to be perfect
with your diet not to havepainful bloating.
(44:43):
Well, no, I think that's thething too, is symptom of
endometriosis.
Well, you can easily, and thisis something I've done, I've
just shamed myself when myperiods are bad,'cause I, oh
man, I shouldn't have eaten thatcupcake.
It's like everybody else can eata cupcake and they're fine, you
know?
And they're not having thesesymptoms.
But I think the thing thatfrustrates me is there's just.
(45:05):
Even in Texas is, you know,people can get imaging and then,
okay, so then they go in for alaparoscopic, but there, I have
so many people, it's like, well,where do we send them?
You know?
I mean, also imaging isnotoriously inaccurate for
endometriosis.
I know there are a lot ofadvances, um, and pelvic mapping
and imaging.
(45:25):
But, and the other thing is.
Laparoscopy, you could have noidea what you're really looking
for.
Yeah.
And miss, I see people everyweek that have had negative
laparoscopies.
And then if I cut, if our cliniccuts them open, they have a ton
of, of endometriosis, so like.
That's where, first of all,podcasts like this, where you
(45:47):
let people be honest matters,but that's where people like
Heather and people like myselfand people like Shannon and,
and, and, um, the advocates whoare using their voices to go
direct.
To the people.
Nancy Peterson, Kate Boyce ofEndo Girls blog, gener, uh, you
(46:08):
know, they're, these are peoplewho are using, um, their voices
on big platforms to go direct tothe, um, I don't wanna say
consumer, direct to the personbecause we can't rely on the md,
right?
They're, they're busy telling usto lose weight, or did we try
(46:28):
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 theendometriosis, fully excised,
and we have to do a better jobat getting out there.
And then the support will comefrom one day from, from
everybody.
That's like that endometriosissummit, that's its cornerstone
(46:51):
is like, we can't wait for youto educate us.
We're gonna do it.
Ourselves.
Well, my biggest thing is I feellike, uh, for the people, like
yes, if we're talking tohealthcare practitioners and
movement professionals here, butin general, people need to
understand their bodies so.
The more the people can educatethemselves.
So you know, I'll tell mypatients, I'll show them, Hey,
(47:13):
this is likely what's happening.
Your pelvis moves this way.
This is what your lymphaticsystem does.
So instead of just tellingpeople what to do, we need to be
educating them on why thesethings potentially are
happening.
So then they can start goingdown their own rabbit hole and
starting to do their research.
And I really think AI isactually gonna help with this.
Too.
'cause people are gonna startputting their symptoms in to
(47:33):
chat GPT and being like, what isthis?
You know?
And then with all the stuffyou're popping out, and I'm not
saying everybody needs to go tochat, right?
But then here's the thing, my,my friend is.
Has 9,000,001 symptoms plusendometriosis.
So she put exactly some symptomsinto chat, GPT, and she also has
Sally at her disposal, right?
(47:54):
So I'm like, what about this andwhat about this and what, and I,
and I serve at this time duringmy consultations as a sleuth,
like a chronic disease, sleuthsort of.
And um, what she learned fromTikTok.
Was that she shouldn't go intothe doctor and say, Hey, do you
think I have Hashimoto's?
(48:15):
Or do you think I have pots?
But she should go into thedoctor and pretend that she
knows nothing about what's wrongwith her.
And she never heard of chat GPTin the first place.
And lo and behold, 10 doctor'sappointments of not being heard,
but the one she goes into, andshe's like.
Oh, how does the thyroid work?
(48:37):
Oh, does that make you tired?
Like she doesn't know all that.
Meanwhile, she's head of a, likea medical marketing company.
She's not a stupid person, butlike.
Like, you have to sort of likefake it and pretend like you're
not this active, engagedpatient.
That's the appointment sheactually got help in.
And, and, and that still existsin many ways.
(49:00):
It is slowly changing in women'shealthcare, but like, I
personally feel like women'shealth.
I've talked to people in thelast week, they have to bring
their husband or nobody listensto them.
Like, it, it, yeah.
I mean it's, it's, it's 2025.
We shouldn't.
And, and, and it shouldn't stillbe like that, you know?
But it is, it is.
(49:20):
It's so, it's like, okay.
And I'm not saying chat GPT isthe only ai.
I just think as AI startsevolving, 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.
(49:42):
Of imaging and endometriosis.
Mm-hmm.
Um, and, and also of the hiddenhernias, which is how we started
here.
And they're taking likethousands of MRIs that are
properly read by specialist, bypeople who know how to pelvic
map and plug them into theseprograms to get, um, better
maps, particularly for surgery.
(50:03):
And I'm interested to see whatthe next 10 years of that is
because.
A radiologist can, there's nofault to them.
They can only look for whatthey're trained to look for.
And could we, are we able totrain the AI maybe a little
better?
Oh yeah, totally.
I think so.
And it's just, it's just fromunderstanding those learned
(50:26):
language models and how itworks, it's just so much just
pumping the data and it's justgonna take so much data for it
to start to learn.
But.
Yeah, it's gonna be crazy.
I'm ex, I mean, I'm lookingforward 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 bestpsychotherapist I ever had was
ai.
I know.
I'm like, chat GPT.
Are you like my, my partner now?
(50:47):
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 forbeing on.
If people, I, I'll put theendometriosis summit, um, on the
podcast here.
Is there anywhere else you'dlike them to follow you or reach
out?
Uh, they could.
(51:08):
Find us on Instagram atEndometriosis Summit and we'd
love you to join us in Orlando.
I know it's far away, but March27, 28, 29, 20 26.
And that is also held virtually.
Um,and@theendometriosissummit.com
(51:28):
you can always join the mailinglist and we'll see you there.
Perfect.
Well, thank you so much.
Take care.
Thank you so much for listeningto my podcast.
It would be a huge help if youcould subscribe and rate the
podcast.
It helps us reach more peopleand make a bigger impact.
I would also love it if youcould join my email list, which
(51:48):
is LinkedIn, the caption forpodcast updates, upcoming offers
and events.
You can also find me on TikTok,YouTube and Instagram at Dr.
Mary pt.
Thanks again.
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