Episode Transcript
[00:00:00]
Jill Brook: Hello fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook and today we are so lucky to have a follow up interview with Dr. Stephen Smith, the interventional radiologist at the forefront of connecting some cases of POTS to Pelvic Congestion Syndrome, or PCS,
a condition of basically messed up blood vessels and poor blood flow, which importantly in some cases may be treated with stent placement or other procedures done by interventional radiologists. We first interviewed Dr. Smith in episode 101, where he explained why Pelvic Congestion Syndrome, or Pelvic Venous Disorders, might cause POTS, and the results of earlier retrospective patient surveys showing that treatment for PCS helped a lot of symptoms, including POTS, at least in the short term.
And even though he is now retired, he keeps working so hard collecting [00:01:00] data, collaborating with some amazing colleagues at top institutions, and publishing papers that are winning awards that expand on his original findings, including multi center, prospective, longer term data, and very exciting stuff like that.
Dr. Smith, thank you so much for being here today.
Dr. Steve Smith: Thanks for having me again. Geez, I'm like, like a second time visitor on on this podcast. Thank you very much. And got some exciting stuff to talk about.
Jill Brook: Well, I am actually so excited to talk to you today. I'm a little proud that we got to talk to you early on when this was just coming out, because I think this is really caught on like wildfire, as a lot of people have realized that this is important. And so maybe just for starters, for our listeners, can you remind everybody what is Pelvic Congestion Syndrome?
And I think sometimes you call it Pelvic Venous Disorder.
Dr. Steve Smith: Yeah, sure. Well now, [00:02:00] Pelvic Congestion Syndrome is out of favor now because well there are various reasons, I don't know, it's an okay name I think, but some of the papers that we wrote will say Pelvic Congestion, some will say Pelvic Venous Insufficiency, and some will say Venous Origin Chronic Pelvic Pain.
But so I guess one place to start is that there, there are you know, we all have veins in our bodies and veins are not like arteries. They're very thin walled and they have little delicate one way valves. And they sort of return blood to the heart by muscles sort of contracting or breathing or whatever, perturbation of the vein, squeezing the vein, and then the one way valves sort of shoot the blood up in a ratchet like effect,
upward against gravity, if you're standing up or walking toward the heart, because there's no [00:03:00] heart in your foot, right? I mean, your, your heart is pumping out blood to the, your whole body, including the lower half of your body, but that blood has got to return to your heart against gravity. And it's, it's a, it's a whole system.
And it works great, often when we're young, but there are a lot of things that can make the system be damaged or work in a bad way. You know, like multiple pregnancies could damage your iliac veins, those are the main veins that carry blood out of the pelvis, because the pregnant uterus could smash the veins against the the spine, the sacral promontory, and damage them and they could scar down and then you would have, if everything clots up or you have like a really bad swollen leg, then they might call it May Thurner Syndrome, which is [00:04:00] named after these two doctors.
But anyway, so, so, I'm an interventional radiologist. We do venograms. We do arteriograms. We do therapeutic procedures where we can put little catheters in and block up blood floated tumors. We can do angioplasty of arteries outside the heart. Cardiologists do that inside the heart. And we, we even suck clots out of the brain for strokes and fix, you know, we dissolve pulmonary embolism clots or suck them out and so I've had a lot of the sort of papers published with research about, you know, trying to do stuff with veins and I developed a big interest in male varicocele.
That's where, you know, men may have a painful bunch of varicose veins in their scrotum, because blood is leaking down the wrong way towards the veins in the scrotum and [00:05:00] stretching them out. Remember, all blood flow in veins is supposed to go toward the heart, right? So if blood is leaking down into the scrotum, stretching out these veins and causing a painful aching you know, swollen scrotum, that's bad.
And so I, you know, oh geez, back in the 1980s was doing a lot of this work. We could block the refluxing wrong way blood flow and cure varicocele. Well, it turns out that Pelvic Congestion Syndrome or Pelvic Venous Pain in Women is female varicocele. Okay. But the veins in the woman's pelvis are a lot more complex.
One reason, one problem is you could, they could cause aching pain, pain in the vagina, aching, burning pain, pain in the left side of the pelvis around the ovary or pain anywhere in the pelvis [00:06:00] that is classically not present when you wake up. It's present when women get up and start moving around. But one of the problems is they go to see their gynecologist and the gynecologist can't figure out the veins or they haven't been able to.
And so about half of all the chronic pelvic pain in the world is caused by veins, but it's not, the gynecologist can't figure it out. And there's a huge article that was published in JAMA where these gynecologists who were part of something called International Pelvic Pain Society, the expert gynecologists and pain doctors, published this huge article where they didn't use the word vein once.
But now we know that the experts in pelvic pain, they don't even know how to diagnose pelvic pain. So what happens, what's the fate of all these patients who actually have veins [00:07:00] inside that aren't visible that are causing their pain?
Their gynecologist can't figure it out. What's their fate? Well, you know, they can get sent to a psychiatrist, they could get, you know, just like all these other patients that you know about. Or they get sent to physical therapists where, you know, they get some kind of internal massage and they feel better, but it comes back.
So, is, then they, they invented a term. So there's something called myofascial pain and myofascial pain is where your, your pelvis hurts and your, your myo, which is your muscle and your fascia hurt.
And so that's why you're getting all this massage. Well, why does your myofascia hurt? They don't know. So that's not a disease. That's a complaint. Get it? But they promote a complaint like vulvodynia is the same thing. They promote it to a disease and then you know, you're treated for that [00:08:00] and, you know, insurance companies pay for it, blah, blah, blah.
But guess what? Somebody didn't go all the way to the end of the line and figure out what was causing the pain. So when we started being able to see these huge varicose veins and blocked outflow veins in the pelvis, we could stent open the outflow veins. We could sort of inject stuff in these giant varicose veins around the ovary and uterus and just shrink them up with no surgery.
And I mean, we just do it with a little catheter procedure, you know, numb the skin, put it in, we're done, take it out. So then we started to see that all this chronic pain was going away. And I had patients that had been, you know, to all these referral centers, you know, University of Chicago or wherever, Northwestern, and nobody could figure out their pain.
And we could cure them overnight. I mean, just [00:09:00] boom. What I'm saying, this heresy. That most, actually most, chronic pelvic pain is caused by veins. There is a Turkish guy named Soysal who did a study, he was testing some drug, and he wanted to figure out who had Pelvic Congestion Syndrome.
This, I don't know, year 2000, quite a while ago. But it's the only study where somebody did surgery on women with chronic pelvic pain, but also did venography and stuff to see if they really had dilated veins that could be causing it. And basically he found that the most common organic, they called cause of chronic pelvic pain was endometriosis.
But even if you look at all the, the organic causes like scarring from infection, endometriosis, blah, blah, blah, 12 percent of those people also had the veins. So what was causing their [00:10:00] pain? And then, you know, there was a huge gap of, you know, like 50 percent of the patients who would be classified by gynecology, who don't understand veins, as just having chronic pelvic pain of unknown cause.
So what happened with me is that one day I had a patient who came in and said, you know, I've got terrible pain, like pain when I have sex, pain in my vagina. Pain when I stand up, I can't work, I can't do anything, I can't sleep. Okay, typical patient we look, we find, you know, big, a huge wrap around veins in the pelvis and a narrowed outflow vein.
And so I said, you know, we'll try and fix it. We stented the outflow vein. We just injected stuff to shrink up the big veins at the floor of the pelvis. So she came back, you know, three [00:11:00] months later and we, you know, I said, Oh, hi, Mrs. So and so, you know, how are you doing? How's your pain, pelvic pain, sex pain?
And she, here's what she said. I don't know when this was 2016, maybe. So she said, Well, Dr. Smith, all my pelvic pain is gone. I can have sex now, no problem. But, she said, my interstitial cystitis, which I had for years, you know, 12, I think it was 12 years, is gone. And she said, I went to the University of Chicago Urogynecology Department and I had all these treatments.
They distended my bladder with, you know, steroid solution, it was horribly painful. Sounds medieval, but hey, you know, if it works, but it didn't work. So, why the steroids? Because they think interstitial cystitis is inflammation. Cystitis. It isn't inflammation. And even the [00:12:00] urologists are starting to figure this out.
They, they're arguing to change the name. So that sort of set me back and then she said, also, it turns out that she had POTS Syndrome and that went away. Really? So I didn't really know much about those, I mean, medical school or something. So what I did is I took three days off and I, and I, I read everything that I could about every condition
that overlaps with interstitial cystitis and with POTS syndrome. That's a lot of stuff. In other words, there's a lot of other named conditions that are treated like a separate illness, but they may overlap with other, these other ones, other named conditions, 50%, 70%. You know, if you have interstitial cystitis, your chance of having dysautonomia is very, very high.[00:13:00]
And the, the Chalimskys, I think at at in Wisconsin figured that out. And that, but a lot of people, this guy Aaron looked at chronic Fatigue Syndrome and found out that, you know, people with Irritable Bowel Syndrome almost all got Chronic Fatigue Syndrome and a bunch of other stuff. Ehlers Danlos Syndrome people, once, if you check them, like 75 percent of them have, qualify as Fibromyalgia.
So there's this nexus of a whole bunch of different named things and everybody just sort of says, Oh yeah, well, if you have POTS syndrome, you know, you have a lot, you can have pelvic pain and you can have migraines, you can have brain fog and you can have irritable bowel syndrome and a whole bunch of other stuff.
But every paper is sort of written from the, I am the king of syndromes and these other syndromes also occur in my syndrome. Well, I don't want to fall into that [00:14:00] trap. So, and also I'm, I'm out of my territory. I'm, I'm in, I'm a stranger in a strange land. So I read about all this stuff. So what did I do? After I had got a couple more patients, I decided I would try and check for links between pelvic venous pain, these people with dilated veins, and every other odd thing that I could think of. So I did two things. Number one, I, I through the pelvic congestion patient support website, and the, and Miranda Richer, who's a very bright, dedicated woman there I, we did a survey of 400 patients who were, you know, what would I call them, not patients, they were members of the support group
who [00:15:00] had pelvic congestion syndrome, and I'll just use these terms interchangeable, diagnosed by a doctor. So we had 400 and just made a, I just made a big, long survey on SurveyMonkey for them to take, you know, like I did it in an hour. I'm just spitballing everything. And, but we ended up getting all of the information back.
And so what I wanted to do is see if these women who were on this support group just for pelvic venous pain, okay? It wasn't a POTS thing, it wasn't a, you know, septad or any of these other words that people use. So, man, it turns out they really did. And they had first of all, they had been diagnosed, and a lot of them had been diagnosed with named syndromes like oh Irritable [00:16:00] Bowel Syndrome, Interstitial Cystitis, Anxiety Attacks, Excessive Sweating, you know, Hyperhidrosis, and a bunch of other stuff, and then if we, if we, I mean a lot of stuff, including Migraine, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, a lot of them, but they didn't have more hypertension than the average population. They didn't have more diabetes than the average population, but they did have a lot of this stuff that, you know, some POTS people think of as septad or, you know,
whatever.
Jill Brook: The stuff in our world, yeah.
Dr. Steve Smith: But so what I got back again, it was just a laundry list of stuff I got back that they admitted they had. And so, then we published that. And that was, that was to try and get people's attention, you know, people, because now we're, we're straddling two worlds, more than [00:17:00] that, a lot of worlds.
Jill Brook: Right, right, right. It's not, it's not unconnected.
Your population is my population.
Dr. Steve Smith: Yeah, but also who's the gatekeeper for these women who have this? It's gynecologists who don't even understand pelvic veins. It looks like everything is clustering around a condition that I know about, I fancy, but a lot of people don't know about.
And so now I'm thinking to myself, well, now, so now what I want to know is a couple things. I wanted to know if, if my own patients had all this stuff, and of course, did it get better? So I just made a huge omnibus questionnaire. And again, from my interventional radiologist, you know, idiot point of view, I just, I put in some standardized [00:18:00] questionnaires, canned things like the International Pelvic Pain Society score, which is just some sort of
collection of a lot of different symptoms that are supposed to help maybe a gynecologist figure out what's causing a patient's pain. And then oh, something called PUF, which is a interstitial cystitis validated score. And the ROME3 score, which I just picked way back then. And it's really, it's really a criteria, not a, not a survey, but I tried to adapt it and make it into a survey.
And then what else? And then the Orthostatic Hypotension Quality of Life score, which is a validated score for orthostatic intolerance. And it has like a cutoff. You could say that below this point, which is either four or six, if your score is that, you don't have clinical orthostatic intolerance, but if it's above that, you do have it.
And then I just threw a bunch of other other questions in [00:19:00] that filled in symptoms of specific POTS or anxiety or, you know, a bunch of other stuff that I thought I just threw in there. And then patients very nicely would, would fill it out. Somebody would give it to him, they'd fill it out.
So, and then we gave it to him before at the first consultation, then at three months and then six months. But, and so we, then, then we ended up with a lot of data. So 2018, I presented like 21 patients at the Society of Interventional Radiology, and people just lost their minds. It's like, we're supposed to be talking about, you know, pain in the pelvis and in the vagina and stuff.
And now we get all this other stuff. So, but I had some, I got a lot of reactions. So anyway. So then the other thing we did is, with Grace Knuttinen, who's just a brilliant gal at Mayo Clinic Scottsdale, in the interventional radiology department, we [00:20:00] did a study where, at my little hospital's, in the suburbs of Chicago and at the Mighty Mayo Clinic.
We took lists of people who had POTS syndrome, you know, and then we got, we did a study where we got permission to look at their imaging. So, did any of them have CT scanning, where we could look and see if they had abnormal pelvic veins. These are POTS patients, okay? So I was looking at pelvic congestion or pelvic venous pain patients and see that they had this other stuff.
So now we thought let's look at some POTS patients, you know, diagnosed by cardiologists, POTS patients, and see if they had abnormal veins just on imaging. And they did. 70 percent of them did. But we had a control group of normal renal donors, and 40 percent of them had abnormal veins, [00:21:00] but 70 percent of the POTS patients, well, yeah, but, so they, so, but it was, it was the P value was very, very low.
It was a .005. So this was significant.
Jill Brook: So can I just emphasize that for a second? So 70 percent of POTS patients had abnormal veins in the pelvis versus 40 percent of healthy kidney donors. That is such a big difference, but then also such a high baseline. That is fascinating.
Dr. Steve Smith: Well, no, but here's what you got to remember. So there's a guy named Belenky. So, renal donors are great because they have to get CT scanned, you know, and so there's a database out there and you can do age match. Great. But so what about this does it mean, aha, so does it mean that normal people, 40 percent of normal people [00:22:00] have, you know, dilated gonadal veins in their pelvis?
And does that mean that, you know, they're asymptomatic? They're supposed to be asymptomatic because they're, they just are giving somebody their kidney. So this guy named Belenky did a study and he found out that nobody was asking the renal donor patients if they had pelvic pain, when you ask them like 60 percent of them had pelvic pain of the 40%.
So, so this is the best we can do for normal group. But what it says is, there's just a ton of pelvic venous pain out there and nobody's asking these people. And if they have it and their gynecologist goes, I don't know what's wrong with you, Mrs. Jones, then that's it. It gets dropped. So, so...
Jill Brook: So can I ask one more thing? It sounds like we take it for granted that tons of people have varicose veins in their leg and you know, you can see it and it's a common thing and everybody knows it [00:23:00] hurts. It sounds like it's equally common or maybe not equally, but it's also very common in the pelvis.
It's just that nobody was talking about it or thinking about it. Is that
a fair way to think about it?
Dr. Steve Smith: Well, you know, when you're at a barbecue and, you know, somebody's standing there by the bar and you, they're wearing shorts, and you look down at their legs, and they've got big, ugly, ropey veins. You can see them, you know, they're on the outside. So if somebody comes to us with the proper history, and we can look inside with MRI or ultrasound or CT or whatever and we can see the veins and it all fits together. Then we can say with very high confidence, you know, I think that your pain it's the type of clinical picture and you have the veins and I think we can fix these veins very, very safely and see if we can fix your pelvic pain.
Jill Brook: You have two papers [00:24:00] that have recently come out just in 2024 that actually say that that story is repeated over and over and over. Can
we, can we talk about Smith et al,
2024?
Dr. Steve Smith: What we did is we looked at that questionnaire and we looked at some separate sub questionnaires for interstitial cystitis
and orthostatic intolerance, the OHQ and and then pelvic pain and ROME3. And what we found was the ROME3 was a little better, not too impressive. And I think the main problem was patients couldn't understand the instructions very well. But the International Pelvic Pain Society score improved 55% at three,
or six months. The PUF, Interstitial Cystitis score improved 34%, and the Orthostatic Hypotension Quality of Life score improved 49%.
Jill Brook: And that's [00:25:00] the one that would apply to POTS symptoms.
Dr. Steve Smith: That's the one that would apply to POTS, to Chronic Fatigue Syndrome, and to well, they use it, they use it mainly for those two, I would say, but it, but it's orthostatic intolerance.
So what causes orthostatic intolerance? Well, it's chalked up to dysautonomia or something called some multi system failure, which nobody had, or, you know, some other organic dysautonomia like Parkinson's or something. Nobody had any of that stuff. So then we would say they have dysautonomia, but we didn't fix any nerves.
We didn't give anybody any treatment for their nerves. We also didn't give anybody any treatment for their generalized joint hypermobility and turned out 56 percent of the patients had generalized joint hypermobility and maybe 27 percent had full blast diagnosed Ehlers Danlos Syndrome. So now we got a bunch of people we think we're treating for pelvic pain, but they got all this [00:26:00] other stuff.
And did it get better? It did get better. The other stuff, pelvic pain got better, thank goodness. So now, you know, we're sitting on something pretty amazing. Well, why didn't we follow the patients up further? The answer is COVID. COVID intervened and we couldn't bring people back in a year, because by then, we were you were forbidden to, to you know, to, to bring back people for normal follow up.
You had to just do phone follow ups and, you know, so that's what we had. So it looked like, so, so now we got a retrospective study, no control group, and a bunch of people who are better at three to six months from a whole bunch of stuff, but that could be placebo effect. You know, it's, this is, this is our first in humans attempt to do this, okay?
And, and you know, [00:27:00] we're, we got nothing, we got no support, we got, we're not a university, you know, we got no...
Jill Brook: But I appreciated
that you wanted to replicate your results for longer, in more patients, at multiple centers and prospectively.
Dr. Steve Smith: That's right. So I'll say one more thing. Then in 2024, we did this study of the same patients, but we look at individual symptoms. And we picked all the symptoms that have their own ICD 10. In other words, you could come to the emergency room with diarrhea or constipation or anxiety attacks or migraines or brain fog or abdominal bloating or you know, a lot of stuff.
And we, we looked at those and charted those out. And then we tried to see if we could bundle those into syndromes. This is a an artificial exercise. But the [00:28:00] important thing is we already knew that people were complaining of all this stuff from the survey. We want to see if our own patients had it, and then what happened to all of those things, including TMJ and a bunch of other stuff.
And so again, this is the database follow up to three or six months. And so then 60, 70% had brain fog, 58 had anxiety attacks, excessive sweating, 64%, hip pain, 73% diarrhea, 62%, abdominal bloating, 82%. And basically, you could take our patients as a group and say this is a group of IBS patients, this is a group of migraine patients, this is a group of anxiety patients, this is a group of hip pain, back pain, IBS interstitial
[00:29:00] cystitis,
and fibromyalgia, and that's, that's important.
Or you could say they're a group of hypermobility patients who have all this other stuff. So we found out that all of the patients improved just about all this stuff, 49 63 percent after treatment, all of that stuff.
Well, if they got Ehlers Danlos Syndrome and they got all this stuff, you already knew that patients would have that. But if I fix their pelvic veins and all that stuff gets better, guess what? That means that the link between hypermobility and all that stuff could be veins and blood return. Well, other people figured out that blood return were a problem, was a problem.
So, finally the exciting part I think that part is exciting, but here's, here's something really exciting.
We took that same crazy big questionnaire and [00:30:00] we gave it to five different centers and they gave to these same pelvic pain vein patients and then they did the same follow up, but they followed all the patients up for a year. This was a prospective trial. And so 59 patients made the one year follow up.
So the big deal is we could get excited over stuff for three to six months and then we don't know what happened. Now we've got solid follow up with the Mayo Clinic Biostatistics Department analysis of what happens to those people after a year. And I don't want to give people a spoiler, but hopefully for the podcast people, they'll be able to see the chart.
Jill Brook: Yeah, we'll put all of the links in the show notes for anybody who wants to to see, and I just want to make it clear that in those 59 patients it was a mean age of 36 years old, 49 people got stents, 9 [00:31:00] got embolizations, and one person got both stenting and embolization. So when you say that you followed them pre treatment and then 3, 6, and 12 months, that, that's what the treatment was.
The stenting and the embolizing.
Dr. Steve Smith: Right, right. So pretty much the same, you know. The other good thing is that, you know, like, say one person would do lean towards stents or embolization or whatever. This is other people. I didn't touch any of these patients. This is somebody else. These are other you know, other operators doing the studies.
And so, we can answer some questions like, is my three to six month stuff, is it, is it repeatable or is it valid or is it just, and if you follow it out longer, do the same thing to the same patients in the same then does it all go bad? Do the, do the results degrade with time? And so the Mayo Clinic Biostatic Department just [00:32:00] spits out all these graphs and some of them just look crazy weird. There's so many things that are following. It looks like salad. But the point is that every single thing, every single thing stayed improved at one year. Everything.
Jill Brook: Well, and you're selling yourself short because first they came down between 30 and 70 percent at 3 months, and then they stayed down.
Dr. Steve Smith: Well, right. So that part of the curve looks like my data from
my pre COVID, you know, stuff. But this stuff you know, A, I didn't touch these patients and B,
it's the same follow up. And so, if you just look at the OHQ, the Orthostatic Hypertension Quality of Life, you know, it does things like dizziness, trouble concentrating, fatigue, head and neck discomfort, problems with vision, which is, you know, seeing [00:33:00] spots or whatever, and weakness. I mean, that's what it is.
So, you know, you could say, well, that's not exactly POTS, but they just use this as a yardstick for dysautonomia and orthostatic intolerance, right? You understand that. I know you understand. So, in the, I'll tell you, that in the data, somewhere else in the data, are all the little other symptoms that you could fill in to make, to make ME/CFS
like, like, exercise intolerance or, you know, PEM they call it. I can't remember what I called it. I think I called it Prolonged Recovery from Exercise. But and then you know, tachycardia, sweating. anxiety attacks, and a bunch of other stuff. Plus, migraines are in there, but they're not in in this chart of OHQ.
But if you look at this, for example, there's a there's a big study done by Dr. Grubb [00:34:00] and Ruzieh, where they put you know, IV access in patients who gave them like liters of saline and they got basically the same results. So interesting. Well, what are we doing when we're giving them saline? We're trying to bolster their intravascular volume and push some blood up to their brain and heart, upper body, right?
So there's a lot more behind this. This guy named Zamuner did a study and with tilt table, and he found out that when you tilt people up and their, you know, blood pressure starts to sag. Their Fibromyalgia pain gets worse and
Peter Rowe and Dr. van Campen did a study where they did the same thing for MECFS,
you know, they tilted people up and they found their symptoms got a lot, lot worse and their brain fog got a lot, lot worse. Dr. [00:35:00] Okon figured that out. And Dr. Julian Stewart figured out that blood was being trapped or stagnant pools of blood in various places, including splanchnic and then a lot of other stuff.
So it's everybody knew that it was vascular, but what could you do? Just give medicine or put people in stockings. And we do that too, by the way. And you still have to do that, give them salt water and all that. And you know, make sure they exercise, blah, blah, blah. But the cool thing about this is, maybe everybody doesn't have this, but what we don't know is what percentage of POTS patients have this whole thing?
Now, I told you that 70 percent of people just on imaging thing had abnormal veins. That doesn't mean that if you fix those veins that they would be cured of POTS. It doesn't mean that, but it means that statistically [00:36:00] significantly more people with POTS have abnormal veins. Okay, well, there's a real bright person named Dr Alexis Cutchins, who's a cardiologist at
Emory. And she sort of took this stuff and said, okay, let's look at our POTS patients who have POTS and see if they have significant, you know, blocked outflow veins in their pelvis. And she came up with a higher number, 80 some percent.
Jill Brook: Wow.
Dr. Steve Smith: So, so, now this is, it's, this can take on a life of its own and I'm, I'm sure there'll be a lot of problems with this, but there's a lot more.
There's a lot more.
Jill Brook: Can I, can I give a quick summary to make sure that we've understood everything correctly and then ask a question based on it? So what I think I'm hearing you saying is that you first [00:37:00] observed and now have studies showing that POTS patients have a whole lot of additional issues in their pelvic veins, whether it's blockages or they're just over dilated or for whatever reason, blood flow is not going through very well through the pelvic region.
And that has been connected to not just POTS symptoms and pelvic symptoms, but all kinds of other symptoms. Everything from excessive sweating and heat intolerance and hip pain and anxiety attacks,
TMJ, abdominal bloating, skin sensitivity, migraines. I mean, you name it. There's so many things, lower back ache, muscle and joint pain, and that these things come down between 20 and 70 percent after getting a stent placed or an embolization.
Dr. Steve Smith: And hip pain, isolated and mysterious hip [00:38:00] pain goes
away.
Jill Brook: So that, that stuff comes down in the first three months. And then at 12 months, it is still down. It hasn't done any backsliding. And you've connected this to Ehlers Danlos Syndrome,
which is interesting, which maybe helps account for why their veins are more messed up in the first place, because
those veins might be extra
stretchy and weak.
Dr. Steve Smith: So the veins are thin walled, but have structural integrity. It's very important. They can't, you know, they've got a, so what, what gives them structural integrity? And the answer is collagen, collagen. So if you have abnormal, so if you have, if you have what we used to call hyper mobile EDS or whatever, HEDS, you know,
we thought that was just, you know, your joints and then there was some vascular kind of EDS and that was your arteries. But clearly your [00:39:00] collagen is screwy if you have a hypermobility spectrum disorder or EDS or whatever. So what we find in just looking at our pelvic vein pain patients is the majority of them have generalized joint hypermobility.
Whoa, is that a coincidence? They also have all this other stuff which goes along with generalized joint hypermobility. But, if you fix the veins, a lot of that stuff gets better. What this says to me is that veins, possibly fixable veins, maybe they're not fixable. Maybe all your veins are just generally bad and you don't have anything that we can magically fix.
Okay. Then, then I don't know for any further along got to do the supportive stuff. But if you do have blocked veins or huge dilated veins and we can just, in a two hour procedure, just, you know, just [00:40:00] totally simonize your veins. Think of it like this. We can be like the U. S. Army Corps of Engineers. We can channel the river and drain the swamps. We don't know if just channeling the river is enough. Maybe it is. But the point is, we're seeing all these people get better. And I'm telling you that it's my opinion that all of these people who have septad and pentad and what, not all of them, but some of them, some of them may have fixable vein blockages and dilations that can, that can be fixed maybe permanently if they're better at a year.
Yeah, so so oh and the final thing I got to say is migraines. 70 percent of these people had severe migraines. Well, yeah, you know, it's their women of reproductive age [00:41:00] that's who gets migraines, but we know that migraines are linked with POTS. So, it turns out that a billion people in the world have migraines, and these people, their migraines get 50 percent better, like 50 percent better.
But, in the paper, the, the third paper that's published, there's a chart of migraines, like a chart of what happened to individual migraine patients. And what you see is that the people with the worst migraines got way better. And if they only got, you know, some of them just, they can go back to work.
They can go to school. And also brain fog. Brain fog, remarkably better, remarkably better. Well, how does dysautonomia and, you know, COVID fit all together? You know, viruses are invading your brain, giving you brain fog. Yeah, [00:42:00] maybe so. But if you ain't got no blood flow to your brain, then guess what? You have brain fog.
Well, what if you can improve blood flow either by, you know, dousing people with normal saline or by opening up a blood return. You know, some people when they stand up, their upper body veins are empty. They're empty. And so even in their brain, every, it turns out that people who have Chronic Fatigue Syndrome and brain fog have low blood flow in their brain, even in their brain stem by, by Doppler.
So are we on the cusp of being able to do something to help some of these people? It's only going to help the people who have these visible, you know, correlatable veins that are fixable. But [00:43:00] just like the poor women with pelvic pain with a gynecologist who doesn't know what's wrong with them, you know, look at all these people that have all those things that I said.
In other words you know, POTS Syndrome and Ehlers Danlos Syndrome and Migraines and Irritable Bowel Syndrome. By the way, these people who had the Irritable Bowel Syndrome, it's just about cured in the one year study. In our study, we couldn't make the ROME 3 thing work. I'm not sure why.
It was like a little better. But we put in three backup questions. Do you have diarrhea? Do you have bloating? And do you have constipation? And those got way, way better. Diarrhea is like 70 percent better. So, so I sound crazy. Irritable Bowel Syndrome, there's thousands of papers written about it. Migraines, thousands, millions [00:44:00] of words written about it.
POTS, same thing. Chronic Fatigue Syndrome, Fibromyalgia. What about Fibromyalgia? So what we found out was that these pelvic vein pain patients had muscle pain, you know, in their upper body and their neck and shoulders, also in their low back and other places it all went away. So if they have Ehlers Danlos and hypermobility, and if Fairweather in this article says that those people, 75 percent of them qualify as Fibromyalgia.
And if we have all these people and their pain goes away, it sounds like we're all talking about the same patients.
Jill Brook: Yeah, yeah, yeah.
Dr. Steve Smith: I'm telling you about patients with pelvic venous pain.
Jill Brook: So, one more connection that I have heard you personally talk about that we haven't mentioned here yet. A lot of people talk about [00:45:00] POTS as a problem of overactivity of the sympathetic nervous system. And for some people, that's kind of just their model of POTS. Can you talk about how you think that pelvic venous disorders could potentially be related to a heightened sympathetic state and how that could result in a lot of the symptoms that are attributed to that?
Dr. Steve Smith: I'm going to tell you my theory.
I think that POTS and a lot of this other stuff, including Fibromyalgia, including Irritable Bowel, is activation of the fight or flight compensation syndrome for lack of blood pressure in the brain and heart. That's an emergency. So the way I, I think it's fight or flight.
I think that POTS is mostly fight or flight. I think that even some migraines are, you know, [00:46:00] to some extent, maybe. Why, why would Fibromyalgia make your muscles hurt from fight or flight. Maybe you tense up your muscles all the time, getting ready for fight or flight, but instead, your muscles just get sore and now they hurt all night and you can't sleep.
Okay, Chronic Fatigue, maybe just, you know, the compensation to get blood flow going to your heart and brain can't, isn't effective enough, you know, and brain fog. Well, what about Irritable Bowel? Maybe, maybe something is triggering mast cells, or maybe sympathetic overdrive opposes parasympathetic.
Remember, we know sympathetic fight or flight is fight or flight, but parasympathetic is rest and digest. Well, maybe you ain't got no rest and digest if you're always compensating [00:47:00] towards fight or flight. So my theory is that blood flow is like you've been shot in Vietnam. You're trying to make it to the helicopter.
Your heart rate is a million and you're sweating and you're anxious. Your muscles are tensed up and you're running to make it. That is pro survival when you're in Vietnam shot and bleeding, but when you have to get up every day and that happens. It's your life is hell. So the permanent, it's a permanent emergency.
Fight or flight. This is my theory. Okay. But a lot of the other people in this field, they don't, they don't say this. And so I'm probably wrong and I'm don't think I'm oversimplifying, but so in, in people like that, in fight or flight, their bowels go to sleep. At first, they may like poop or something, you know, and then, and then everything shuts [00:48:00] down because all the,
all the flow is set up to go, you know, for fight or flight. So, if you could relieve fight or flight, sympathetic overdrive, then maybe, you know, your Irritable Bowel Syndrome would go away, and maybe your nausea would go away, maybe your constipation would go away. So, now that brings us to, to this paper by Cui. So what he found out was if you increase blood flow into the inferior vena cava, and remember we're talking about patients who, it's like you've choked off blood return at the waist or the belly button. So if you increase it in humans, you suppress sympathetic nervous system activity. Like suddenly, boom, really?
[00:49:00] Wow. So that means that there's actual evidence that increasing blood return or blood flow up out of the pelvis, which is what we're doing. I mean, we didn't think so. We thought we were doing, we thought we were decreasing blood pressure in the pelvis. We are and but we, we never thought about where that blood was going, right?
It's going north, but in patients who have a deficit up there, who have like the Rolling Stones song, Empty Heart, somebody said, you know, now they're going into tachycardia, they're sweating, they're going into fight or flight. Here's another thing, what I found in these people, they got this fight or flight thing going on.
They have intense arterial vasoconstriction at the periphery, right, to try and drive blood flow. They have tachypnea, which blows off CO2, [00:50:00] which causes even more vasoconstriction.
Jill Brook: Yeah.
Dr. Steve Smith: Huh. But they also have venous congestion blocking blood return. So they get these blue legs. Blue legs and cold skin. You can press your finger on it and take it up and it will just look white.
Well, why does it look white? Because blood can't get to the skin and blood can't get out of the skin. Get it? Arterial and venous you know,
bad stuff. But in this situation of an emergency, it's a very weird emergency, right? Nobody else has these cold, this cold blue skin stuff, all right? It's the patients who have venous flow congestion plus intense arterial vasoconstriction.
Now, you would think if people had in, you know, crazy arterial vasoconstriction, they would have [00:51:00] Raynaud's phenomenon and they do. And does it get better? I think it does, but I forgot to put that question on the questionnaire. And I forgot to put nausea and there's something about weight loss, but you know, I made up the question.
It's stupid. So patients complain about weight loss less if you followed them, but we didn't weigh them or maybe we did, but we didn't keep track of it. So, so here's what I'm telling you, people with Ehlers Danlos, you know, the majority of them have chronic nausea and bloating and all this other stuff.
And I think that it gets better with these people, the people with the cold blue legs that Dysautonomia International, they call it POTS leg. It's not POTS leg, you know, that's wrong. I've never seen it in other people that just have vein problems.
I have seen it in people with chronic vein problems [00:52:00] who then get blocked arteries like diabetics.
They get this weird red skin where you press on it and it just turns white. But, but the patients we're talking about aren't diabetics. They aren't people with blocked arteries. They're people with arteries in spasm. Get it?
Jill Brook: Yep.
Dr. Steve Smith: This is what I think. This is what I believe. So I'm just telling you what I think.
And somebody is going to do all this research to, to follow up. But it won't be me, but it will be people like Dr. Cutchins, Dr. Spencer, Dr. Grace Knuttinen and many, many others.
Jill Brook: Well, you know what's cool about this is so these are the people that are going to stand on your shoulders, but you've mentioned that there are some people who came
before you who had struck upon the same thing as early as 1948, but it got lost [00:53:00] in history! Can you talk about that?
Dr. Steve Smith: Yeah. So, so in 1948 one of the most brilliant doctors that I, have ever seen a guy named Howard Taylor, who was a gynecologist in New York, and he really looked into what he called Pelvic Congestion Fibrosis Syndrome, and he wrote the series of three papers, and I'd say anybody who's interested in this stuff at all, you know, any newcomers that want to learn about it, read these three papers.
Okay, they're presented in 1948, when I, elderly that I am, was negative two years old. What he did is he, he found that there were a bunch of people who had like non arterial hyperemia, he called it at first, then he said it was venous congestion and that some of their veins were obliterated and that they didn't have all the other stuff [00:54:00] that they had this syndrome, but he found that they had a bunch of other stuff.
And they had flushing of their skin, you know, it sounds like he's describing MCAS. They had bladder problems. They had anxiety, like just out of control. Like you might have if your norepinephrine and sympathetic were jacked and fight or flight. They had a chronic invalid like fatigue that was disabling.
They had bowel problems, you know, they had headaches. They had just a bunch of problems. But so many of them and so bad that he put them together with these pelvic veins saying that somehow they were linked. He didn't know how. He even noted that they had abnormal sympathetic activity. This is in 1948.
The guy was a freaking genius, but of course, I'm sure he was shouted down by all the other gynecologists who didn't believe [00:55:00] in Pelvic Congestion Syndrome. And so, then he just sort of had to retreat into saying, well, it's psychosomatic, because he didn't know what the link could be. So, then, we can, we can jump ahead.
To all the way up even to 1998, when Peter Rowe and Tony Anthony Venbrooks, Anthony Venbrooks is the best researcher from interventional radiology on Pelvic Congestion Syndrome, what we call it. So, they're both at Johns Hopkins and they, Peter Rowe and or Tony, must have had gotten together and figured out that a bunch of Peter's patients who had Chronic Fatigue Syndrome had giant pelvic veins.
Really weird pelvic veins. These are young women. So here's what they did. They did this elegant study where they [00:56:00] did venography of these chronic fatigue patients and they sent it into the Journal of Vascular and Interventional Radiology. Which they just rejected it. So Howard Taylor's stuff is just, you know, put on the shelf and you have to dig it up like an archeologist.
And then this paper, which I have a copy of it. And you should see it I mean, ask Peter Rowe if you can see it, but that's 26 years ago, it never got published, and nothing, it just, so for 26 years, people have had this, and it gets called septad, it gets called POTS, and it gets called a million things.
But nobody looked. You know, there's an old saying that one of my professors said, you know, within normal limits, you've heard that? Have you ever heard that? Like, if you read a chart, it'll say you know, lungs within [00:57:00] normal limits.
Jill Brook: Huh.
Dr. Steve Smith: He, he looked at those letters and he said scornfully, Do you know what WNL means?
And we, you know, we said, no, what? And he said, it means We Never Looked. That's the essence of this whole thing. So then Peter Rowe does all this research with these, you know, other brilliant people where they put people on tilt tables and they figure out that Chronic Fatigue Syndrome, that Fibromyalgia, that POTS syndrome, that brain fog, all are related to
bad blood return from the lower body and why? I don't know. Maybe, but the, the theory of course is that all your skin and your veins are just stretchy and they just bag out like a water balloon and that probably is happening, you know. So, so the only addition here is we can [00:58:00] go back and see what everybody figured out.
But we have a way to fix this stuff, you know, really easily and safely. So the final thing that I would say is that from my point of view, Fibromyalgia and Chronic Fatigue Syndrome and POTS syndrome and
maybe Irritable Bowel Syndrome in some patients are the same syndrome. Okay. But they may have the same cause. And why do I say that? Because we changed one thing and improved all those things. We didn't cure their collagen. Okay? We didn't cure their Ehlers Danlos Syndrome or any of that other stuff. Okay.
And so, the one other thing that I should say two more things. The migraine thing. There's a guy named Rosenberg in Guatemala or Honduras somewhere. Who did a whole bunch of pelvic congestion cases and [00:59:00] he found that a bunch of them had migraines that the migraines went away like 80 some percent.
And they stayed gone. So he, he writes, you know, a confirming study saying that, you know, you can permanently cure migraines by fixing pelvic veins. And so there's a guy named Gavrilov in Russia who is another real smart guy. And what he figured out is that pelvic veins that are in distress, maybe under a lot of chronic pressure, as opposed to just baggy dilated veins, that are associated with pain and not just incidental, okay, that they, those patients have high levels of substance P and something called CGRP.
These are powerful. Peptides or vasodilators, but there are, there are [01:00:00] receptors for them in the trigeminal ganglion area and maybe in the brain. And that if you give people those two things, they get migraines. And now they have drugs to block those things, but they may be likely being emitted into the bloodstream by distressed pelvic veins.
Wow!
Jill Brook: Wow.
Dr. Steve Smith: There may be the, again, there may be the link, and I'm just telling you fragments of stuff from here and there, but the point is we're all people are trying to put all this stuff together, right? And, you know, you can have brain fog from viruses, you can have Chronic Fatigue from you know, Epstein Barr virus or COVID, a million things, and metabolic encephalopathy, blah, blah, blah, blah.
So don't think that I'm, I'm saying, you know, I've got some panacea like Jesus or something. No, [01:01:00] no way. What I'm saying is we have a huge case of WNL here. Okay. All right. And when I say that I never looked, I was supposedly, you know, somebody who knew a lot about pelvic veins. I never knew this. So, I absolve everyone who didn't notice it before because I didn't notice it.
Jill Brook: Wow, well you've put so many puzzle pieces on the table and connected a whole lot of them. And, you know, the thing that I can't get out of my mind is I think what you're saying is that for some subgroup of people who have so many different complex syndromes, what if a plumbing problem has been at the center of it all along?
Dr. Steve Smith: It's a blood problem. I mean, it's, again, so here's what I'm saying, and I'm saying that in a lot of these [01:02:00] patients, the problem is fight or flight, abnormal, chronic fight or flight state, as a compensation for essentially being an upper body shock.
Jill Brook: It's mind blowing. It's amazing.
Dr. Steve Smith: Man, I got people telling me I'm crazy. And, and for every patient that, that doesn't fit this, then, then I'm wrong, right? No, I'm not saying everything is everything. There's some final common pathway where viral brain invasion and poor blood flow and, you know, viral vagal nerve destruction or whatever, where it all comes together in some final common pathway, okay?
I get it. I'm just saying in some patients we have to look instead of writing WNL.
don't
Jill Brook: Absolutely. Absolutely. Well, thank you for looking and thank you for [01:03:00] continuing to look and to dig after you retired. I know you told me privately, you don't love golf, but we know you could be golfing right now and that you,
but this is, this is really groundbreaking. And, thank you for being the person who has worked so hard for so long to pull it all together.
Dr. Steve Smith: So I, again, I would say the real research is not done by me. You know, it's done by these, it's done by these, these people whose names I mentioned. Don't forget their names.
Jill Brook: Thank you so much. And just one final question. If somebody out there is listening and saying, Oh my goodness, this sounds like me. Where can I learn more? I know we will put the the links in the show notes. Is there any place that you would send them to look? I know that, for example, you're not taking more patients, but some of your colleagues might have websites that they could go to.
Is there any place you'd send them for more information?
Dr. Steve Smith: Yeah. Um, Dr. Brooke Spencer in Denver is, is [01:04:00] like gearing up to, to provide this, you know, all over the country and she's, she's told me about her plan. So that's pretty amazing. And then, you know, I'd say Mayo Clinic, Scottsdale, Dr. Knuttinen. And there's a guy at Stanford named David Hovsepian. At Cornell, there's Neil Khilnani and Ron Winokur.
Oh, and I forgot, at, in Philadelphia, there's Karen Gonsalves, and there are, there are others. There are people in at Emory. Steve Citron there's a guy at Mayo Jacksonville uh, uh, Zlotko, and he's an interventional radiologist. And, of course, Dacre Knight, and for, for pediatric patients, there's Peter Rowe at Johns Hopkins.
For Army veterans, there's [01:05:00] Isabel Newton, who is at the VA Hospital in San Diego, and there are other people, I mean, like I say Blake Parsons in Oklahoma City. Danny Chan, I'll save him for last, because he's another guy that independently discovered this before I did in 2012 and he is in Dallas.
I forget to mention Danny because he's so busy I can never even talk to him. But, but he, he discovered, I left him out, he discovered this in 2012. And so, he, he again, a brilliant guy who listened to his patients when they told him stuff that didn't make sense. And so, I told you my story because that's a story that I know.
He did essentially the same thing. And so, but earlier, like at least four years earlier, but then, you know, he was doing it down there and whatever. [01:06:00] So now, the big deal is that this last one year paper just won the grand prize at the Cardiovascular and Interventional Radiology Society of Europe, or CIRSE.
It was presented in Lisbon two weeks ago, and it was just awarded, this study I'm telling you about, was just awarded the grand prize as the best scientific presentation at the entire meeting. So people are going to notice this now.
Jill Brook: Amazing. Astounding.
Dr. Steve Smith: Kudos to Dr. Grace Knuttinen who was the first author.
Jill Brook: Dr. Smith, thank you so very much.
Dr. Steve Smith: It's like a firehose, and this is always the way it is when people ask me stuff, but, you know, maybe you can listen to it a little bit at a time.
Jill Brook: Absolutely, absolutely. And we'll have a transcript.
Dr. Steve Smith: And don't, you know, I know it's frustrating, and, it's, it's, it's, [01:07:00] what we really need is we need more research money to do the proper research, we need to do something called a crossover trial of this. And if there's some rich person out there, I know a way you can save thousands or millions of people.
Jill Brook: Alright, famous last words. Dr. Smith, thanks a million for this incredible information. And hey listeners, that's all for today, but we'll be back again next week. In the meantime, thank you for listening, remember you're not alone, and please join us again soon.
