Endometriosis is often talked about as a pelvic disease, but it's actually a systemic inflammatory condition that affects the entire body. And the way we diagnose and treat it is still failing too many patients.

In this episode, I sit down with Jandra Mueller, a pelvic floor physical therapist in San Diego and the incoming educational chair for the International Society for the Study of Women's Sexual Health. Jandra specializes in treating patients with endometriosis and has a unique perspective both as a clinician and as someone who went through the diagnostic odyssey herself.

Her own experience getting diagnosed drove her to focus on this work. She spent years dealing with symptoms that kept getting dismissed and saw multiple specialists who couldn't figure out what was wrong. Even as a pelvic floor PT working in a hospital-based women's health center with access to specialists, it took years to get the right diagnosis.

We discuss why the new guidelines for diagnosing endometriosis are a step forward but still fall short. We talk about the pelvic pentad the association between endometriosis, hypermobility, mast cell activation syndrome, pelvic floor dysfunction, and vestibulodynia. And we get into why fibrotic endometriosis is often overlooked during surgery and what that means for patients who continue to have symptoms after excision.

Highlights

• Doctors can now start treating endometriosis based on your symptoms without requiring surgery first.
• Scar tissue from endometriosis is often missed during surgery because it doesn't always show up on the biopsy.
• Endometriosis often shows up alongside other conditions like hypermobility, mast cell issues, and pelvic pain with sex.
• Not all surgeons who say they specialize in endometriosis actually have the advanced training needed.
• If you still have symptoms after surgery, keep pushing for answers—it doesn't mean the pain is in your head.
• Treating endometriosis with pelvic floor PT means looking at your whole body, not just your pelvis.
• Pain before bowel movements is a classic endometriosis symptom that often gets overlooked.

If you're experiencing symptoms that aren't improving with treatment, don't stop advocating. Finding the right endometriosis specialist matters not all surgeons have the same level of training.

Consider working with a pelvic floor physical therapist who understands endometriosis and can look at your whole body, not just your pelvis.

Make sure to subscribe to the podcast so you don't miss upcoming episodes.

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or PT and then talk a little bit about endo. Are you comfortable talking about your experience with endo and stuff? And then we can talk about how endo is like systemic, inflammatory, not, okay. All right, cool. All right, awesome. Hey y'all, it's me, Dr. Smeena Rahman, gyno girl. Welcome back to another episode of Gyno Girl Presents Sex, Drugs and Hormones. I'm Dr. Smeena Rahman, sex med gynecologist and menopause specialist in downtown Chicago.

Yeah.

Today I'm super excited to have one of my dear friends and colleagues joining us today to talk about pelvic floor, endometriosis, sexual pain, all the things, ish-wish. We'll talk about ish-wish because we always do. My dear friend, Jandra Mueller. I was trying to do a little over there, but it doesn't have the same effect. Hey, Jandra, so thankful that you're here today. We finally made it happen after cancellation.

Hello.

I know.

Jondra and I are dear friends from Ish Wish. She is the upcoming educational chair for the International Society for the Study of Women's Sexual Health and an amazing pelvic floor physical therapist. I'm going let her further introduce herself, where you're at, and all the things. And then it'll be in the show notes too.

Perfect. Thanks, Samina. I know we've been trying to schedule this for a long time. So happy to finally make it happen. My name is Jandra Mueller. I am a public floor physical therapist in San Diego, California. I have been practicing for about 14 years now, which is pretty crazy. I got into this actually at the very beginning of my career when I was still in PT school.

next.

ended up at a clinic where there was like a women's health therapist there that I was able to shadow. And when I went into shadow her, there was a particular patient who now looking back and like this, this was endo. She was probably really 40s, had had a hysterectomy, again, no known reason, just pelvic pain. And following that, she had really severe back pain that was really like onset immediately, unrelenting, had been

Yeah.

of course, sent to many different PTs because it's back pain. And finally she got to the clinic that I was at as a student and there happened to be like a travel PT that was practicing there for the time being. And that PT finally said, you know, I think that this all happened after you had a hysterectomy. Have you ever seen like a women's health therapist? Now that time, this is like 2011, 2012, like it was not like

There was not many of us out there. So she just happened to be at like an ortho clinic where there was a practicing PT. And so she ended up seeing Aaron and shortly after a few sessions started to finally notice a change in her symptoms. I mean, she was on the brink of divorce. She had been struggling with this, I think for a couple of years at this point with no relief whatsoever.

Yeah.

And it was just really cool to hear her story and just to see how manual therapy in particular could be helpful for this population when especially when it wasn't just your standard, you're leaking because you had kids. It was this unsuspecting cause of her pain. And it just happened to be that that therapist put it together. You had this and then you had...

your symptoms and it's not changed. And so it was really cool to hear her story and just the way it was impacting her life. I mean, she's very emotional and I like, need, I want to do this. And I had to seek out a continuing education course while still in PT school because we don't learn this in PT school. I remember going to this weekend course as a third year PT student among, you know,

Yeah.

Yeah.

Yeah, yeah, yeah.

working professionals that had been working for many years. was at University of Washington. And it was like, I feel like it was like 300 people, maybe there was maybe 200. It was a huge like auditorium and had four other people. And it was like, here's what it is. Okay, you guys all have a sheet and pick one person to change. And now we're doing this. So was kind of intimidating. And then basically have...

Yeah. Yeah.

I started at an orthopedic practice after graduating, but I said, I want to do this. And I had a friend who was an OBGYN in Hawaii and she believed in it and started sending me patients. So I just had them put some blinds in a room and said, this is my room. Yeah, it just kind of developed over time. Yeah, into.

Wow, nice. That's so cool. Do you think they're integrating more pelvic floor PT in physical therapy schools now?

No, but I think there's a lot more interest. know.

Right, because I feel, you know, it's really, I mean, I you know, maybe it's skewed, because I feel like we do see a lot of PTs at Ishwesh. And I just know so many pelvic floor. I think it's like, you end up in this silo of like, Oh, okay, PTs more common now. But I pelvic floor.

Definitely it became kind of the thing, the niche thing to do. And probably in the last, I don't know, six, seven years, absolutely, there's been a huge rise in it and need for it and interest in it. But I think at best you have maybe like a two hour elective. I know NYU had kind of a course, because one of my coworkers, he previously, he had...

Jandra Mueller, DPT, MS, IF (05:28.782)

Yeah. I mean, just like sexual medicine for us, right? We're trying to integrate like Q-tip tests and vulvar exams and all the things into, but it's like literally like me inserting myself at North Worth, you know, like all of us that are in Ishwish trying to insert ourselves into different places with the help of like organizations like Tightlip and all the things, like, yeah. And so I feel like it's something that we gotta.

Yes.

keep pushing for, it's not, you're right, it's not standard in OB-GYN either. So I guess, no surprise, it's not standard in PT school.

And I think even beyond the additional training that's offered for PTs for pelvic floor physical therapy. mean, one of the reasons I really got involved with ISWISH is because I didn't have that training. mean, it was when I moved back from Hawaii to California, I started with Pelvic Health and Rehab Center with stuff. And I mean, that mentorship really changed how I practice. I knew

I knew I was missing many things, but I didn't know what those things were.

know. Yeah, it's so interesting. You don't know what you don't miss until you can't unsee it after a while. Like the vulva like, you know, how many like in sclerosis cases we might have missed, but now you can't see it if you try.

right.

No. I the amount of people I feel like I've diagnosed with lichens and I'm like, wait, you had somebody look at this. You've seen five doctors and no one pointed this out because they're not looking at the vulva, right? They're going internal. And similarly, PTs aren't really trained in looking at the vulva and the tissues that impacted. So we recommend dilators for.

Yeah.

you know, insertional pain or pain with intercourse, but we don't, we have to know all the things around, even though we can't necessarily provide treatments for that. We have to know when our interventions might actually do more harm. And that's really where I found is switch to be super valuable and really trying. I always tell fetus you need to come to fall course. need to come to a switch because you get this piece, which if you're seeing, yeah, if you're seeing anyone with pelvic pain,

Yeah. Yeah.

I'll finish it.

Even if you just focus on pregnancy and postpartum, we know that painful sex can occur because of the tissue and GSL. So yeah, come to ISWISH if you're at

Yeah. Yeah. Well, it's so funny because I'm on these OBGYN forums and sometimes, you know, you'll have an OBGYN say, well, I don't know. This PT was trying to tell me to put in estrogen testosterone gel and like, Oh, she's finished. I'm like, you should listen to that PT. But yes, you know, like, so I think it's like, we don't know what we don't know. And some people don't have the capacity or ability or, you know, the time to go and seek extra training if they're in, you know, these.

40 patient a day practices or whatever. But I think that like, it's something we should all, you know, try to strive to keep our fingers on the pulse of it. When you mentioned Stephanie Prendergast, which our friend, you know, she was on my podcast last year talking about pudendal neuralgia. I feel like every PT, just like, you know, just like in gynecology, you maybe start looking at more sexual medicine and more, you know, menopause, like I've kind of, you know,

Thank you.

divvied into a little bit of an even smaller silo. I find that to be the case for a lot of physical therapists. just interviewed

Julie.

Please edit that Carrie. I just interviewed Julie Barrett.

in.

Just...

Edit.

Carrie I have very bad brain fog. So no, yeah, you know, I just interviewed Julie Baron to who was on my podcast as a public for PT But it looks like you know, a lot of her focus is now in the area of pelvic venous disease You know, some people do a lot of more postpartum care

And some people focus on PGAD. I had April on, and we talked about PGAD and her experiences with PGAD. But I find, you do a lot of education around endometriosis and really its associations with what we call the pelvic pentad of MCAS, endometriosis, hypermobility. So let's talk a little bit about what brought you into the endometriosis space.

Hmm.

educate about it and treat it in the pelvic floor space as well. But what brought you into understanding and really feeling more passionate about endometriosis?

In short, well, my own experience, and I'm happy to talk about that, but just how ridiculous it was to figure out what was going on, being in the perfect place as far as having all the resources at hand and still having to figure out what the heck is happening. so, I mean, of course, hindsight is 20-20. So yes, I did have symptoms starting when I was 13. It was starting with rupturing cysts I was

you

know, shortly after my period started. I don't ever remember having painful periods. And I think that's important, at least in my case, and for others that really struggle with figuring out why they're having so many symptoms, because endo really does present in a variety of ways. it's, most people will experience painful periods, that isn't everybody. And so really understanding the depth of the disease and how it presents and taking good history is really important.

But it was probably, yeah, like 27, 28, went through a really stressful time and mine really just started with intense bloating and constipation. And honestly, it was probably the healthiest I was in my life, probably from like a diet and exercise perspective. So it was very strange to like have this super big belly and like having sugar cravings. And I was...

Yeah, very heterogeneous as agent, right?

training for this half marathon and I was eating super healthy, but I like didn't poop for three months, like legitimately. And so yeah, it was horrible.

wow.

That's an awesome feeling. Now that I think it's referred to as in the endometriosis community as endobloat. Yeah. It's real.

Yeah. And so naturally it was like constipation, severe bloating, let's do a colonoscopy. It was all clear. But the prep really did help and it kind of reset to some degree. sorry about my dings. Okay. Yeah, essentially, let me put this.

and

I can't even.

There we go. So all that was clear, kind of reset me. And then I was seeing naturopaths. I saw a gynecologist. I actually was working at a hospital-based women's health center and a friend of mine that was there, she was the ultrasound tech and she was super into different things. And we would play around with the ultrasound and she would like ultrasound me and show me like my urine dripping into my blood. Like it was kind of crazy. So she was like, my gaseous cyst here.

Thanks for entertaining us.

We were just going at lunch and play around with it. And the radiologist that was there, he was super helpful and he was like, yeah, I mean, there's fluid there, there's some cysts. I had an IUD, my second IUD at the time. And he was like, maybe it's not that effective. Talk to your guy about going on birth control. And I had been on birth control from 13 to 20 and every sort of which one, all sorts of different pills.

think that's why you didn't have as much pain with periods because you know it controls your dysmenorrhea.

Yeah, I do. I do suspect that that could I could have been really a good responder to birth control. But I don't remember having the pain even when I started it was these rupturing cysts that led me to the ER. Because I remember it being kind of non like I wasn't on my period when that happened. And then yeah, probably within the year I started birth control. But all the other side effects mood changes, know, weight gain, like all that, and I just didn't talk to get well in other ways.

Yeah.

Yeah.

So for seven years, I just tried all these different ones. And then finally, the guy when I was 20 said, you you can try an IUD. Super painful. I know it's not painful at all. Well, for those of you I know too, think I had fibrosis all over my cervix. So that was probably involved in why it was so painful. But it was great. It was a great form of birth control. It was great to like not really have a period. And I didn't have many issues until that, know, huh?

Yeah.

Did it control your bloating? Or no? Did it control your bloating?

Well, I didn't have that until like all this started happening the second, yeah, like my second one. So they were like, maybe it's, you know, not effective anymore or it's a bad one. So then they put me on Lola Westron and the IUD and I was like, this is ridiculous. and then I was, I was moving back to California when this was all happening. And I remember thinking, need to like get all my doctor's appointments in a row before I switch and have to set up everything. And.

Bye.

I think I had my guy in appointment two days before I moved back. And I remember feeling like, oh my God, I got a UTI. And I was freaking out and they canceled my appointment. I was like, no, no, no, no, no. I have to come in. I did not have a UTI, turns out. But I was on the low ester and I had started for probably three weeks into it. And I was really irritated like in my vulva and the antibiotics, whatever, ended up getting seen, moved. And I feel like

Yeah, need a support.

very shortly after starting at PHRC, Josh Gonzalez, who was a sex med fellow with Erwin Goldstein came in and gave us a talk. He had probably just finished his fellowship a year or so before and gave us the talk on hormonally mediated vestibulodynia. And I was like, my God, that's me. And it's like, can I stop taking this like today? It was like, yeah. So I went and saw him testosterone was super low. That Q-tip test was awful. And I was like,

Yeah. Yeah. Yeah.

I'm like mind blown. And then I thought of all these patients, I'm like, this is what was happening. So went back to the IUD.

Yeah. It's funny for those, mean, that listen, they've heard of me talk about this hormone-mediated vestibulidinia or associated vestibulidinia, but it really essentially is where we deplete your androgens and estrogens, natural estrogens, and the subset of women that probably have some sort of receptor issue at the vestibule, which is so androgen-rich.

that you really need so much more androgens to keep your vestibule healthy. At the end of the day, we see this in probably like what, less than 10 % of women taking birth control. But if you think about the number of women taking birth control, it's probably missed more than ever. But if you open your eyes and look for those rhizorbalabia and small clitorises and the vestibule that's inflamed or tender to palpation throughout the vestibule, then that tells you that...

It's very much like GSL and GSM, the genitourinary, histrionir, menopause, and lactation. So just a form of hormonal suppression or vulnerability that happens to younger patients. and don't you find oftentimes it's like the patient's like, well, I just have to use a lot more lube because I've been in this relationship for a long time. And that's why I don't really have a little bit of pain with sex, but not a lot of pain with sex, but I'm getting a lot of UTIs. And then you do it you're like 10 out of 10 vestibular Q-tip pain.

And you're like, dude, it's not that you just need more lube. You actually...

Right, and no patient is gonna come to you and say, my vestibule hurts.

Yeah, no, no. I mean, hopefully one day.

Yeah, right. Exactly. Or they might've heard like Volvodynia or like, I'm just not that interested in sex for a number of reasons, right? And that was totally like my situation and perhaps like impacted my relationship at the time. Like didn't know all of this stuff. So at the same time that all of this is happening, I'm having these, what I thought was like allergies to whiskey. I was getting hives. I was having histamine reactions and I wasn't quite sure why. I was still trying to figure out

Yeah.

Yeah.

Yeah.

the digestion. Finally, I saw a GI, and this is like three years into it now. And he's like, has anyone talked to you about SIBO? I was like, what's that? Yeah, SIBO was crazy. And of course, that was definitely the reason for my constipation, like a large reason for the constipation and bloating. And I think I went through six rounds of treatment. So I think overall, I've had positive hydrogen and methane, known as IMO now. I've had hydrogen.

Yeah.

Yeah.

had suspected hydrogen sulfide. And each time it was like two rounds of the antibiotics. And then I went to functional med and did some of the natural and then all kind of worked, but it kept coming back.

And it's a good, I don't know, some people might not know what sebo is. It's a small intestine bacterial overgrowth. Yeah.

Yeah, or intestinal methanogen overgrowth now for the methane because it's not a bacteria, it's an archaea. So basically the number one symptom is bloating and then methane is highly correlated with constipation. And it's probably one of the number one causes of IBS. And it's you it's diagnosed using a breath test. But yeah, had never heard of this before. And so it made a lot of

Yeah. Right.

She did air, suppose you're listening, she did air quotes for Ivy.

Yes, and a lot of different causes, but antibiotic use, which is really common also in those with endometriosis, long history of antibiotic use or post-infectious IBS or adhesions impacting the intestines like an endo. And finally, skipping ahead,

Yeah.

trying to treat all these things, did all the diets. Everything kind of worked, but it was still there. And then I went into the ER for what was maybe appendicitis. And it wasn't appendicitis, but then they did a CT. They found this other thing that they had to do imaging in. And it was a series of events during that stay, which ended up being like a four-day hospital stay, because pain wasn't getting controlled, but also it showing all these weird things. I had partial lung

collapsed at the time and using that inspirometer. Yeah. So they were like pulling me out of the MRI because my stats were like getting low. I was, they thought it was maybe some sort of infection, you know, this person has a bladder infection. They did a transvaginal ultrasound. They're like, we think you ruptured a cyst, but I had like severe abdominal pain, fever. Every time I'd push like the button, because that's what they do. They give you like the morphine drip.

My fever would go, but as soon as was time to hit that button again, my fever would spike. So they were like, I saw infectious disease. I saw a hospitalist. I saw a guy and I saw a GI. I saw everybody under the sun. And then I remember I'm super sensitive to different drugs and have reactions to most antibiotics. I remember them giving me a drip and I was like, I think I'm allergic to that one. And they're like, no, it's probably not. This is like a really safe one. Instant hives.

I'm potty. Yeah, so that was a fun stay. And at the end of it, they were like, we don't know. Follow up on the cyst on your liver. Go get an echo, some heart stuff. And here's your inspirometer. Go see your OB-GYN. So I think it was a patient of mine at the time, because I was out of work for four days. And I think she was the one that was like, do you think you could have endo? I was like, I mean, at this point, I guess.

you

Nah.

So was working with a, she was a great public pain doctor and she knew kind of her place in endo. She did endosurgery, she did ablation and excision. I knew what to kind of ask at that point. We went in and she was like, well, you don't have endo, but your left utero sacral ligament was really weird. So we took a biopsy and we took a sample of like this fluid that never went away. And actually in the pathology report, the ligament

Yeah.

biopsy came back as like fibro adipose tissue, something like that. And then in the fluid actually, it said cells consistent with endometriosis. But I still not diagnosed with endo. And I told her, just take a lot of pictures, if anything, like all into a specialist and follow it up with Dr. Orbach. Exactly. Or that they recognized. And this is like where my big passion has come about is

the flu had been doing it. You just didn't have any other implants. so.

Was she a MIG surgeon? a... Okay.

No, no, no. So she was a urogyne and she's a great, like she was a great public pain doctor that we worked with, you know, had seen Undo, but like kind of knew like I'm not a specialist, but I've done this, we can explore this. So I kind of knew what I was getting into, which a lot of people don't know that, right? That doctor says, yeah, I do excision surgery. And that makes them an excision specialist. And that's just not the case. But patients don't know that.

Not the present. Yeah.

And that's a big problem that's come about in the last probably 10 years or so that I've seen is this transition from everyone now does excision surgery, but what does that actually mean? So in the end, I did have endo. I went to Dr. Orbach who, cause I finally said, could this all be like, could this GI stuff all be endo? And she was like, absolutely. So I did have probably like 12 areas excised. And I think only two of them came back as

Yeah.

the traditional endometriosis, which this is why I feel so strongly about the definition of endo when people speak about endo or there's papers, endometriosis is not the endometrium. There's components similar, so glands and stroma that are similar to the endometrium, but it is entirely different tissue. And largely, it probably doesn't arise from the endometrium via retrograde menstruation. I like to think about it more so endometrial derived.

that look like it.

But then you have the genetics and you have all this immune response to transition the cell. But otherwise, it's probably not stemming originally from the endometrium itself. And that has guided.

I mean, there's patients that may have this classic sort of endo, but I think it's such a spectrum disease that you don't know how your inflammatory response is, right? Or what your mast cells are doing, which we should talk about, or all the things. Because we now, think it used to be more, I mean, it probably is still for a lot of people is fringe to think of endometriosis as it's not a pelvic disease, it's a systemic inflammatory disease.

Yes.

Yeah, right.

Yes.

We see a lot of it in the pelvis, but we also don't recognize the other symptoms, I think. And so I think that's a lot of the points that you always make in your lectures too, and it was, is around that. But I think it's important to acknowledge that, you know, there might be some people that have classic symptoms, but I think a large majority that get gas lit or that don't get the help they need don't fall into that category, you know? And I feel like.

Exactly.

that's when we run into trouble because nothing is a monolith. It's all, you know, potentially variations.

And I think for me, even after that, cause then I had, then I got a reaction to the COVID vaccine and that was like the start of like a mast cell activation syndrome. And it made a lot of sense for some of the histamine stuff that I had experienced.

No, I'm listening to you and I'm thinking, mast cell, mast cell. And all the cysts, right? Like all these mast cell, you know, whenever I talk to any, well, you know, especially Tanya Dempsey, we were at this conversation about that's kind of how she first associated mast cell activation was in PCOS patients, which is also an inflammatory condition. But she started noticing how many lipomas and cysts that mast cell activation syndrome patients tend to make.

Hmm?

Yeah.

Not all of but it is in the spectrum.

Mm-hmm. And for me, yeah, most of my pain came around cysts specifically. And then like the dyskisia piece. So this is another symptom that is one of the classic symptoms of endo. it's, most people say, painful bowel movements, but that is really misleading actually. And a number of patients I talked to, they share the same experience. It's actually prior to the bowel movement. The bowel movement itself actually is quite relieving.

Mm.

Now.

Who is?

But it's really intense. almost feels like a period cramp, like with this urge to have a bowel movement. But it's like for me, I felt like I was almost about to pass out. I felt like this like intense kind of like tingle cramp throughout my whole body. Like I just have to sit there and then it would pass like 30, 60 seconds. And one of my patients recently told me that actually, so this happens a lot going into like Target or Ross or Home Goods or like,

Yeah, yeah, books, books too.

those stores and this is a thing. Yes and there's something about the lighting and it was so funny she shared with me recently a post on a somebody's social media that was like has anyone like dealt with constipation like I think I have endo and blah blah blah and in the comments somebody said have you tried going to Target or home but it's

Yeah, yeah, yeah. You get that like immediate tenesmus where you have that push to go to the bathroom room.

And it's like immediate and you think you're gonna die and then it passes and like it feels forever but it's probably like 30, 60 seconds. So that was my other kind of classic symptom that I didn't put together and that birth control did not help that because I remember having that throughout my entire kind of teenage years, my birth control. But I didn't know what that was and I didn't really talk about it because it was embarrassing. But so.

Yeah.

kind of putting the pieces together for, I had a lot of fibrosis and then when I dealt with all the mast cell stuff after like seven, nine months of dealing with that, then I had this resurgence of these are my endosympaths. And my first excision surgery was March, 2018. The first diagnostic surgery was November, 2017. And then I found a great surgeon in San Diego, took insurance and I was like, might as well set up some appointments there.

At that point, did look for, we did some workup to see if there was like thoracic or endo stuff because of thoracic endo diaphragm because of some of the symptoms I had. And then previously I had that like partial lung collapse. We didn't see anything there, but when she went in, all I had was fibrotic tissue in the same area. So she removed that and then again, symptoms in a way. And I think the fibrotic piece of...

Yeah. Were you having shortness of breath when you were having your cycle? Like you would get catamomile signs like.

Yeah, and then this like right shoulder pain and neck pain that kind of came cyclical too that was, yeah, and just some of the weird heart stuff that I've probably been sent for an echo like three times and then it's clear. So something as weird as going on. But then every time, both times I had the excision surgery, all those symptoms went away, but it wasn't, they didn't do anything on my diaphragm or I didn't seek care, like a bath for thoracic. So I think it's just the inflammation and

Yeah.

Yeah. Yeah.

Prior to that second surgery, dealing with all the COVID stuff, also, we were in COVID, right? And at this point, there was no home testing. had to go to those drive-up centers. But what was really interesting is every time I like thought I had exposure and thought I had COVID, which I didn't have COVID at all. I think I got COVID one time, but a couple of years later, 2023 maybe or 2024,

I always spiked fevers and had these flu-like symptoms either around right at ovulation or right before my period. And I knew that because I had my app and I had my receipts from going to the testing center. So I would get tested for COVID thinking I had COVID, but then the symptoms would resolve in 36 hours. So all that went away post the excision surgery. And again, I had no like endometriosis, but it was fine. So that's where I think

Yeah.

Yeah. Interesting.

like I've been really interested in looking at that piece of it, especially in relation to mass cell is that fibrotic endo is not often recognized or addressed during a surgery in these excision specialists who, yes, they can remove lesions, but they're only removing many times lesions that they know to be the classic lesions, right? But what about these clear lesions or these areas where there's increased

us.

blood vessels seen, but like no real clear classic endometriosis lesion or fibrotic tissue. And fibrosis, there's a few really good articles that are like, what's the role of fibrosis in endo? It's an overlooked piece because when you actually send that to pathology, no longer do you have the endometriostroma in gland. So it's not technically by definition, histologically endometriosis. But it's

sometimes I'll look at patients' pictures and their path reports, and I'll identify in the picture pre-excision in the path report, because sometimes you catch it and it's like fibro blah, blah with endometriosis, and you can almost see the transition of that classic lesion into the fibrosis. You see this like little yellowish dot with fibrosis around it, and then that was the lesion that came up. And so because it was caught at that stage, this was my like theory.

Perfectly.

we know that mast cells are involved with fibrosis and connective tissue issues. And so I find that piece to be pretty interesting as far as the mast cell component goes. I think we, I don't know. Yeah, I was talking to Jim Simon. We had an interesting conversation and I agree with him on this that probably there's different types of endometrial. I mean, we know that there's phenotypes, like,

there may actually be different disease processes happening, maybe those with fertility issues compared, because why do some people only present with fertility and some of patients don't ever have pain, right? Why is it one or the other? And I think...

And sometimes they have huge endometriomas and they're like stage four endo and they have zero pain. Whereas somebody with just one or two micro lesions have centralized pain that is all the time chronic pelvic pain. So I think it has to do with, right?

Thank

Yes.

Right. So I think we need to look, we need more research. And I know we talked a little bit about like the new ACOG guidelines, which there was good new stuff in here, but I think when it comes to still finding who that specialist is all the time, I see patients come from physicians that have told them they're excision surgeons and even by even reading their intake forms, I'm like,

they still have endo. And then I'll ask them to their pictures and many of the times I can still see the endo lesions and I recommend a second opinion from somebody I know like does this thoroughly. But then if those patients don't get to somebody like me that can help educate them about that and point that out, well, I didn't have endo, they didn't see endo or yeah, they removed everything, but I'm still having pain. And then they start looking somewhere else for their symptoms and

Yeah. Yeah. Yeah.

I think actually some of the new guidelines in there in, I've read through this a few times, the new guidelines, I think they kind of allude to this, but they can't quite come out and say it, you know, say in here.

Yeah, let's just review quickly that previously ACOG for 20 plus years really, you know, recommended that surgical diagnosis of endometriosis was necessary to treat endometriosis. Now, the reality is those of us that actually see it in the office, we would empirically treat based on symptoms because we knew that, you know, either the pelvic MRI or ultrasound, they didn't have the findings. And so sometimes, you know, we would

you can kind of spot an endometriosis patient if you've done it long enough, And the variety of symptoms. so instead of, so now the guidelines are kind of caught up, so you can go from there.

Right, well, historically, no. The gold standard for diagnosis was surgery. The treatment, was especially in adolescence when it first presents, ACOG's guidelines were they have primary dysmenorrhea. So let's break this down. Primary dysmenorrhea essentially means they have painful menstrual cycles with no known pathology. The guidelines suggest to...

This was virtual. Yeah.

Thank you.

Yeah.

treat with NSAIDs and OCPs. So there was no guidelines to do further workup, make a diagnosis to show pathology, but it suggests they have primary dysmenorrhea. Until they fail empiric medical treatments such as NSAIDs or OCPs, and then you can consider further imaging or diagnostic surgery for this group.

Right.

And then you can consider secondary dysmenorrhea. So that makes no sense to me. And then the world consensus, which it did not go to at that time, basically said, you, all these patients that were then diagnosed with endo, when you speak with them, they will tell you that their symptoms started in adolescent. So it was very backwards. And so now in the updated guidelines, that has changed a little bit and you now no longer like,

Right.

Yeah.

Well, this isn't an adolescent's guidelines. This is just general guidelines for endometriosis. You can, without any further workup, you can now, based on symptoms and physical exam and your clinical reasoning, start empiric medical treatment and even consider a diagnostic lab.

I don't see.

I mean, the truth is, you know, those of us that are probably doing this for a long, like we do it all at the same time. I'm not going say like, you should stay in pain until I get your imaging and you should stay, you know what I'm saying? Like, I don't know. Sometimes hearing these guys, I'm like, no, it's like you're doing these concurrently. You're saying, I'm going to give you the order for this. I'm going to put you on something. I want you to try this. I want you to try this, you know, so.

Yeah.

Yeah.

And yeah, because there are people that I think studies show about 60 % of those individuals with endo do respond well to medical management. Now that should just be a conversation. Here's all the options, where do we wanna start? But historically that's not been the way it's, take birth control for this. And there's no conversation of, if you don't respond to this, then we should go here.

Or at the same time, we're going to do some imaging and get, you know, if we can consider a surgery, we can book now, we can hold, we can talk more about this. That's how the conversation should go. And so there is more support of that in the guidelines, but there's still some, there's still some areas that I think need some work, including like, you know, biopsy should be taken, sure. But then they allude, even if the biopsy is negative,

you can't fully rule out. And I think that's kind of the way to come out and say, there may be more to this and be in some way a right to right surgeon that may have not been a specialist. That's kind of how I read it. But I think there's still some really old data in here about risk factors. I think these are associations, right?

Yeah, and not class.

Dr. Sameena Rahman (38:02.849)

I'm really saying knowledge is an inflammatory systemic condition, which I thought was strange. This is pathological condition. Yeah. There's not just a pathological issue. This is like, this is bladder. This is cardiac. This is all the things. This is fertility. Yeah. This is inflammation, right?

Yes, I thought that was my that was the best part. Without the definition, correct? Yeah.

yet.

Yeah. Right. And so I think, I think ultimately at the end of the day, we just still need better guidelines and we need better training and standardization. So when you go to a doctor and they say, yes, I do excision surgery, that means you're getting the whole thing. They know all the different lesion types. They do wide excision. They really understand this. That's what they do. But that's not what's happening right now. And, you know, it's not to say that

people don't get better going to some of those doctors, but maybe they have stage one or two and they only have these very common lesions. And so I'm super happy for those individuals who get better. But what if you're that person that has fibroidic endo or it just got missed because it's hard to see with the visible eye. And I also like that they put in here, they do emphasize some of the imaging, but they don't get into the nuance of that. There's barely any people doing the advanced

transvaginal ultrasound. So unless you're trained to like look for endo with that, the standard basic transvaginal ultrasound isn't going to show it. But they do say, you know, even if it's negative, like that doesn't rule it out, which I was happy to hear that as well. So I think we just

Yeah.

Yeah. I just want to comment about the surgical piece. Because I I'm a trained OB-GYN and I've done laparoscopic surgery. I don't do any of these major surgeries anymore as sort of gone into the sexual medicine menopause space. But I have to say that I'm not trained in minimally invasive advanced surgical techniques. But I can tell you this nuance around it is that endometriosis in the pelvis is

it can be very scar, can be a very difficult surgical case, right? And so, you know, the endometriosis for some patients, it acts almost like a cancer in that.

it's the tissue is very friable. Like you pick up the tissue, it'll bleed. You you pick up the tissue, it's adherent to the bowel. All of a sudden you opened into the bowel, you know? And so there are techniques that you learn in these advanced training, this three additional years of surgical training that these surgeons get. So you're getting a high volume of, you know, endometriosis cases.

the more experience you have, obviously the more you can like nuance and say, okay, I'm gonna get on top of the iliac veins and I'm gonna remove that piece of tissue with confidence versus, my God, if I get too close to the iliac and I rupture it and then she bleeds to death, you know? So it's kind of one of these things where you have to understand and that understanding only comes with really a lot more experience and a lot more.

training under the supervision of someone who will say no, the way you remove that tissue is you gently pick it up and you excise it in this fashion or that fashion, understanding the planes and all the things. I can say that like, you know, because I've been in cases where I historically, you know, was scrubbed in with someone. And I was like, Oh my god, this looks like

Yes.

you very complicated. And as someone that wasn't highly trained in it, you get scared, you know, you're like, crap, like, what am I going to do? And so we used to call it the peak and shriek, you know, where you say, okay, you're going to go in there and you're going to see if you can diagnose endometriosis and this patient with pelvic pain. and you put in a laparoscope, you drop a scope in and all of a sudden you see endo everywhere and you're like, okay, I'm just going to take a biopsy and close because I'm not the right person to do this. And so to bypass sort of that. And so in some places that might be the best you can do when you're

Right.

communities that don't have a lot of surgeons that are really trained in this because there's not, you know, there's not a ton of fellowships in this and you know there's not a ton of people trained in it but you know you can actually then say like okay I'm going to go to someone that has MIGS, MIGS trained fellowship where they're going to get these additional three years of laparoscopic training specifically in these complicated cases. It's just like GYM cancer right like I could go in and remove a uterus because I know how to do that but like

you do I know how to then treat endometrial cancer if it comes back positive? You know, the no, I don't know how to get to the lymph nodes and to do that safely without, you know, causing harm, right? So that's, that's why these additional trainings are so important.

Totally, and I will say that there are physicians that say they are endometriosis specialists that are MIGs trained that still, there still is more to that when it comes to endo specifically, but yes, you are definitely gonna get a better response, but I think the best thing to know, to think about if you're a patient that has continued symptoms post excision surgery with a MIGs or any surgeon,

is to keep advocating and don't fully rule it out. It could truly be that there is central sensitization. There's other undiagnosed issues that are going on that are the cause of your pain, but keep finding people don't give up on that and find the people that can help you. So, because it's just hard.

Can you just quickly just tell the listeners like the difference between peripheral sensitization and central sensitization? Because I think some people may or may not be familiar with this terminology.

Yeah, peripheral, well, sensitization just refers to changes in the nervous system, in peripheral nerves. nerves that are outside of the spinal cord and brain, central meaning spinal cord and brain, that get hypersensitive due to ongoing or chronic stimulus. So essentially with endo, you have these inflammatory mediators constantly being produced by these lesions over time. So, you know, since you were a teenager, probably even like,

pre-pubescence essentially. And over time, you may start to develop these symptoms that are ongoing, but this is sending signals to your nerves that send messages to your brain. And what first can happen is now those signals aren't being listened to. Hey, this isn't being addressed. Your nerves are like ramping up the signaling. Hey, pay attention to me. Something's going on. I'm here. And now it takes less for that nerve to get stimulated and you have a sensation.

that can become this altered sensation. So instead of this light touch, feeling like light touch, this light touch now feels like, wow, that's kind of burnier, that's really painful because the nerve is sensitized and it's changing the perception of what that stimulus is.

And it's always sensitized usually, like you're in chronic potentially pain. Cause it's chronic mode of, yeah.

And then you write. And so when those signals keep going on and they're being ignored, now you have changes in the brain and you start to develop central sensitization. So now the brain's like, hey, we're not being listened to. And so they're ramping up from brain down that constantly drives the signaling. it's not like when you put on a t-shirt, this is what I.

We're always in pain.

use your explained patients. When you put on a shirt, initially you feel that shirt, right? But throughout the day, don't, the shirt's still touching you, but you're not feeling that shirt touching you anymore because it's not important. But when you have central sensitization, your brain's like, I think that is important. We gotta, this is touching you, right? And then that can become like very distracting. And while it's not always painful, like your shirt touching you, it can become painful for issues.

nerves.

all around where those nerves are innervating the tissues, yeah.

Sorry, my man, he's texting me. Okay, so I mean, that sometimes happens with endometriosis. Some people do get that central sensitization from being in pain all the time. And so that's how they develop chronic pain. And then they get that peripheral sensitization sometimes when the nerves in the pelvis are not talking to the nerves in the intestines or the nerves in the bladder and those associated pains, right? So, and again, we now consider...

sort of this pelvic pin tad for some patients with endometriosis, right? So you want to talk a little bit about that. I know want to be cognizant of your time because we've been talking so many good things. I just want you to mention that and then tell me a little bit about how you approach it in your office.

What was the first question? Sorry.

the pelvic pentad with endo hypermobility MCAT. Yeah.

yeah. So I think I was talking about kind of my experience with the fibrosis and my stem from mast cell stuff. And I think as mast cell activation syndrome has increased the awareness, I don't know if truly the incidence has increased, but we are more aware of this and are considering it. We also see that things that come with MCAS or patients present with joint hypermobility and MCAS and endo and

vestibulodynia, like neuroproliferative vestibulodynia. So we are seeing this association between all of these different conditions that, again, I think we need more research to understand like what is causing what we had. patient with neuroproliferative who's now in PA school and she presented a poster on her, it was actually on herself. And it was one of the first patients who we got her pathology from.

her endo diagnosis and those cells, and we compared it to her vestibule, for vestibulelectomy, and they both showed an incidence of mast cells. We know mast cells contribute to fibrosis, connective tissue laxity. So we just see these findings in a lot of patients. And I think this is where, you know, my conversation with Jim Simon, it was like, I think that these could be considered different disease processes, which I agree, you don't see everyone with endo with

MCAS and hypermobility and all of this. Right. Exactly. And actually in that patient, I looked back at her pathology report to see like which lesion was sampled and it was a fibrotic lesion that had the muscles.

Yes. But maybe the ones with phrabotic lesions, right? Like that might be, yeah.

Yeah, that's another point to make is that there's been a lot of studies that show when they remove the endometriosis implants that they do see a higher concentration of mast cells per high-powered field. And so think that was like the first association that we kind of made.

And just, you know, as a review, mast cells are like your first line of defense against, you know, allergens and other things, and they degranulate a lot of factors, and sometimes they degranulate nerve factors. And as they're degranulating nerve factors all the time, you get more density of, you get a proliferation of nerve endings in areas that can cause these pain syndromes, think. And so that's how we think, if you acquire...

Mm-hmm.

pain with sex that we think is from the vulvar vestibule that we think is nerve related. We think there's an association with all of this.

Mm-hmm.

Absolutely. And the nerve hypersensitivity too in endometriosis lesions, right? These lesions are innervated, they have their own blood flow, grow like very similar to cancer. And so I think we need a better understanding is there one major cause to all these different things? Are they truly just associated? Is there genetics that are predisposing patients to all of these conditions? But when you start to think

Yeah.

that patient that you're treating for hypermobility in your clinic, maybe you're not a pelvic floor PT, or maybe you're not an OBGYN, you're a rheumatologist. And that patient has hypermobility and they are complaining about either infertility or painful periods. That should flag you to think, hey, we see this a lot in this population. It may be worth seeing an endometriosis specialist if this is really impacting your life.

Yeah.

And that's important to just start to recognize these conditions often come all together. You just might need to ask the right questions.

Yes. Right. And I found this was so interesting a few years ago when I first like in my office made the link and I remember asking people at Ishwish, have you ever noticed that these endopatiients sometimes really have like pots and they're always passing out and they pass out when you have like, know, da da and then

And then I think that's like a year before we got like Tanya Dempsey and all these people to come over. But it was like one of these things where everyone was like noticing the same thing. And I have to say the only way you can notice this is because you have time to take a history. And our current medical system, I say this all the time, is not set up to handle most medical complaints, but especially complaints of...

chronic genital pelvic pain in vulvodynia and vestibulodynia. And so because we spend time understanding our patient processes, asking outside of the pelvis what's happening, making connections, like how people make connections between TMJ and pelvic floor dysmorphism, all of these things. And so that is, I think, a problem in our current state of healthcare.

Yeah. Well.

That's great, John. I love that you were able to tell your whole story and yours is like really one of those examples of so many of it coming together. But I don't know, are you hypermobile too? Not really, yeah.

No, I mean, I do have some stuff in my neck, but I would not be considered like I have laxity and flexion extension x-rays kind of show there's some hypermobility there, but that's a very specific location, but not general hypermobility.

Thanks.

And I think it's a spectrum disorder anyway, right? Like it's like, so you might be on the lower end of the spectrum or something. Okay, well tell us, okay, one more. I just want to talk a little bit about what you actually do. Like, cause you're such an amazing pelvic floor PT and I know you have to go cause you have a patient coming up, but just, you know, we, we might just have to have you come back and talk about like actual pelvic floor stuff that you're doing in your office. But your, your special interest is.

So I treat, yeah, chronic pelvic pain, all pelvic health primarily, naturally, because I focus so much on endometriosis. A lot of my patients are patients with endometriosis, which has now gone into some of the hypermobility aspect and then like vulvar pain, so painful intercourse. And usually I'm not always the first PT patient seek out, but I think I feel like I've built my toolkit where

Sometimes there's been really great PT that's done a lot of internal work and I'm gonna try to offset and kind of address some of the things that they haven't. Some people are brand new, they've never been. And it really is, like you said, taking a good history. Sometimes my first appointment is really just history taking because I need to know what's all going on. And things will start to unfold because patients don't always know why is this important for me to tell you or why is this important in my case? And it'll come up and it's like,

Wait, let's talk about that a little bit more and we can explore that. But I think my role is yes, I do pelvic floor physical therapy, which is really orthopedic physical therapy, but you get to have the pelvic floor piece, but it's whole body. So you can't just isolate the pelvis and the pelvic floor. You have to look at the integration of the impact of the body on the pelvic floor and the pelvic floor function on the body. So lots of thoracic, rib cage, spine work, feet, hips.

back, you have to look at all of that and breathe and the diaphragm to really have optimal pelvic health. And so some people don't have time to do that if they have a 30 minute appointment and they're really, you know, that appointment occurs every four to six weeks. That is hard. And you may need to offset that with other things. But really, I think to help treat this population, you need the time.

Yeah.

to spend with the patient on a regular basis to kind of hit all the different moving pieces.

Yep. Awesome.

Well, thank you so much, Jongra. I know you have patients waiting for you, so we will talk more about this at later time. But I'm so glad that you, I know we were both passionate about talking about endometriosis today, and I know that this is your passion as well. So I'm glad that we were able to address issues of endometriosis that may not oftentimes get noticed. You are the new, I was gonna say scientific, you are the new education chair for International Society for Study of Women's Sexual Health. So patients have, or people that are involved in ISHWISH can always get involved.

and the educational side. a huge committee. Anyway, so thank you so much for being here. Thanks so much for everything you do. I'll put in the show notes where everyone can find you.

Yeah.

Thank you, Samina. Thanks for advocating for endo education.

Thanks, Sam.

Yes, and remember I'm Dr. Spina Ron, Guido Girl. I'm here to educate so you can advocate for yourself. Please join me next week.