00:00 – Dr. Fogelson: Where the person feels the pain is not necessarily where the problem
00:04 – is. So one of the most basic principles of neuropelveology is understanding what
00:11 – part of the nervous system the pain is coming from.
00:23 – Dr. Folgelson: Thanks for inviting me to talk with you guys, and I’d be happy to you
00:27 – answer whatever questions that you may have. Maybe I’ll just give you a little bit of a
00:34 – spiel about me. I’m Nick Fogelson. I’m a gynecologic surgeon in Portland, Oregon.
00:39 – And I have a practice called Northwest Endometriosis and Pelvic Surgery.
00:44 – But I have a lot of interests.
00:47 – I am interested in everything everyone else is not interested, in in a way. I just
00:53 – have my own pathology. When everyone says, we don’t know how to fix
00:56 – this problem, I think, oh wait, I’ll try to fix it if someone needs to, which is sort of self-
01:03 – flagellating. So
01:08 – this issue of chronic urinary tract infection is interesting, and interstitial cystitis is
01:12 – interesting. I have seen a lot of patients with interstitial cystitis and I’ve always
01:13 – wondered. They say they have a urinary tract infection, it feels like they have a
01:19 – urinary tract infection. But classically people with IC have a sterile urine, and they
01:21 – don’t have a urinary tract infection. And I thought, even as a young surgeon, I
01:27 – thought, this is weird. Like if they think they have a UTI and they’ve had other UTI and it
01:33 – was positive, like why is this not a UTI?
01:38 – And yet when you culture the urine in those patients, that comes out negative.
01:38 – And so that’s sort of a classic thing, they say it’s not infectious. Well, now we’re
01:39 – finding out that
01:47 – that the classic way of culturing a bladder is actually just trying to grow the urine on
01:48 – an agar dish, it only grows a small subset of bacteria, and that people can have
01:57 – infectious states in the bladder and other areas in the body that are not easily
02:02 – cultured in that way. So we have these new technologies with DNA-based cultures
02:06 – where they literally look at the sequence of DNA within the urine and they find the
02:11 – signatures of the bacteria, and there’s many, many cases where you can do a
02:14 – traditional culture, it comes out negative, but if you do a DNA-based culture you’d
02:15 – find out that they really do have bacteria in there. And so we have this concept of
02:24 – biofilms, which I didn’t invent by any means. But this is the idea of where
02:28 – you can have infectious bacteria can actually become stuck to the surface. And
02:32 – we’ve known about that for a long time in orthopedic surgery. Like biofilms infecting
02:38 – orthopedic implants for decades has been a concern. And they have over time tried to
02:43 – develop implants that either have ultra smooth surfaces or have an impregnated
02:47 – antibiotic or something that tries to keep biofilms from forming like on a hip implant.
02:53 – It’s that because they’ll have implant failures because they get infected.
02:58 – And so now we’re coming to know that you can get biofilms on biologic surfaces like
03:05 – the inside of your bladder, possibly the inside of your gut. And so this concept of a
03:12 – biofilm infection in the bladder is very interesting. So there was a woman named
03:19 – Ruth Kriz, who was another iconoclast, who decided to pursue things that other
03:22 – people said was pointless and
03:23 – became very knowledgeable about bladder biofilms. And almost developed a complete
03:30 – ritual practice on helping to manage them. And what we found out is that when people
03:32 – have symptoms of chronic urinary tract infection,
03:34 – you can document a biofilm, which is usually documented by a negative culture
03:38 – but a positive
03:44 – DNA culture. Or possibly they’re both positive. Then
03:51 – we started thinking about, how are we going to treat this? And in some cases it
03:52 – involves longer-term antibiotics, but also antibiotics instilled directly into the
03:54 – bladder. And then something I’m learning about now is from a more functional
04:00 – medicine point of view, like what
04:06 – what underlying states are perhaps predisposing people that have these
04:09 – infections. And I’ve learned a lot about that from Ruth Kriz actually,
04:13 – and I continue to try to read about it in the times that I have to read about things. And
04:18 – the concepts like vitamin D deficiency seems to have an impact on acidification
04:23 – of the urine and the environment for growing or tending to promote or tending
04:29 – to hinder bacterial growth, and certain dietary things as well.
04:34 – And so we have sort of the triumvirate of antibiotics, certain dietary
04:39 – modifications, and then some kind of bladder medicines you can take that will
04:40 – break up
04:47 – biofilms potentially. And hopefully people that can
04:50 – have these really chronic urinary tract infections can see resolution of these
04:54 – problems. I would tell you that one of the reasons when I say that this field is a field
04:58 – that like a lot of people say, oh you can’t fix that, or, it’s a bunch of
05:02 – nonsense,
05:04 – they never have clean answers. Like no one’s
05:07 – pulling out the sword and cutting the Gordian
05:09 – knot and saying, here, I know how to fix it. The reality is that these problems
05:12 – are complicated. The reason why
05:14 – the mainstream world says it’s nonsense is that
05:17 – it’s so complicated, no one can seem to fix it. And then when the person that gets
05:21 – interested in it starts to suggest new ideas, what they
05:24 – suggest doesn’t always work. And they point at it and say,
05:28 – look, what you’re saying doesn’t even work.
05:30 – The reality is that by using these strategies, I think we’re more effective than
05:36 – people that say you can’t do anything. But I will fully admit that some
05:40 – people still seem very difficult to treat
05:43 – and continue to have issues. So it’s like I said before about when you take on these
05:47 – unusual areas, you have to be somewhat
05:51 – self-flagellating in nature, because you’re starting to work with people and you have
05:56 – some success and some failures. And mostly doctors like to have successes.
06:00 – Failures make them feel sad.
06:04 – Melissa: I can imagine. Patients need someone that is
06:06 – willing to help though, so that’s really important.
06:08 – Dr. Fogelson: Yeah you’re willing to try. So fortunately this is an area that can be done
06:09 – very remotely. Like there’s very little reason that
06:12 – you have to see a person. You really don’t need to see someone in person to address
06:17 – this. We’re working off of labs, we’re working off
06:21 – cultures.
06:22 – It’s certainly helpful if a person has had the standard workup, like with the urologist
06:27 – or
06:28 – once they’ve gotten maybe a CAT scan to make sure that
06:29 – there’s not some issue with the kidneys or chronic
06:33 – urine or chronic kidney stones or something that
06:38 – any urologist is going to make a diagnosis of.
06:42 – But once you’ve ruled those things out, then there’s not really any need to see
06:46 – someone in person, which means that it’s a little
06:48 – bit easier to do this over telemedicine. And we can
06:51 – actually have a patient send a urine sample to Microgen, which is usually who
06:56 – we use, and get the results sent to us. And then we
06:59 – can do consults over the over the phone, and so forth.
07:04 – And it only takes a little bit of time, we don’t even charge that much, it’s
07:08 – just a matter of putting these pieces of information together and then coming
07:12 – up with a plan. In some cases, these treatments involve using instilled
07:16 – antibiotics, and unfortunately that’s kind of expensive
07:21 – because it’s not available by any pharmaceutical company.
07:25 – You have to compound it. So there’s a couple of companies that do compounded,
07:31 – and instill things,
07:32 – and they can actually make little sacks of antibiotic solution with a disposable
07:38 – catheter tip for each one. So you could teach a patient to catheterize
07:44 – themselves and just inject it themselves. So you can get the whole thing sent to
07:50 – someone’s home.
08:03 – Melissa: We have been hearing from more people that are using those kinds of
08:03 – treatment methods, and we have received a lot of questions for you because I know
08:07 – you have different areas of specialty.
08:07 – Dr. Folgelson: Yeah well, why don’t you shoot?
08:09 – Melissa: It would be good if you could first explain some of those specialties. So
08:09 – neuropelveology is one that I think is quite fascinating, maybe you could tell us more
08:12 – about that.
08:21 – Dr. Fogelson: Sure, so neuropelveology is the brainchild of Mark Crossover, who is a
08:21 – Swiss surgeon who for decades was doing this stuff on his own and not really telling
08:24 – anybody because I think, quite ethically, he wanted to make sure it worked before he
08:25 – started teaching people. I would say in the last 10 years, neuropelveology has been
08:28 – born as a field.
08:30 – And it’s interesting, it’s really applying things that we learned in medical
08:36 – school and forgot, and now you’ve got to relearn it and apply it to pelvic pain. When
08:36 – we’re in our second year medical school, we have to learn the neurologic system to
08:43 – excruciating detail. And it’s the course that every medical student dreads because it’s
08:43 – very difficult,
08:49 – very complicated, it hurts your brain to try to understand
08:54 – these neurological relationships because they’re very, very complex.
09:00 – And so you cram like crazy to pass the test and then you immediately flush it out
09:06 – and make room for something else. And what I have found is when I’ve studied
09:06 – neuropelveology, you’re like, oh yeah, I remember this, I learned this in medical
09:13 – school but I forgot it 20 years ago. So basically what we’re trying to do is have a
09:22 – really, really good
09:23 – understanding of neurophysiology, and somewhat neural pathophysiology, but
09:28 – mostly just the way that nerves are supposed to work. And then when
09:32 – somebody complains of pain,
09:33 – like the standard pelvic pain way of saying, if someone says what hurts here and you
09:37 – say, well, the pain must be there, which is wrong. It turns out, if you really think about
09:43 – it neurologically, pains are not always occurring where the patient… where the
09:47 – person feels the pain is not necessarily where the problem is. And so one of the
09:53 – most basic principles of neuropelveology is understanding
09:57 – what part of the nervous system and pain is coming from. So is the pain visceral
09:58 – because there’s visceral pains? Which are very dull aching pains that are carried
10:05 – generally through the sympathetic nervous system and they’re carried not through the
10:10 – spinal cord. They’re carried through the sympathetic chain and then they enter the
10:14 – spinal cord into the where these nerve plexuses are. In the case of pelvic pain, it’s
10:19 – usually the inferior hypogastric plexus. So you have these visceral pains and then you
10:26 – have somatic pains, which are literally a pain where a person tells you exactly
10:30 – where it hurts. And these are the kind of pains that
10:32 – we’re more familiar with. Like if you get caught with a knife or you get burned,
10:39 – you’re going to feel a somatic pain. And exactly where you feel the pain is exactly
10:41 – where the injury occurs.
10:42 – And so it turns out that if if you have injury to a somatic nerve you will actually feel the
10:49 – pain at the end of the nerve. So if you have irritation in your sciatic at the top of your
10:55 – sciatic nerve, people feel pain going down their leg, maybe they feel pain in the
11:00 – bottom of their foot. And I think that everybody realizes there’s nothing wrong
11:01 – with their foot.
11:02 – The problem is… we call it sciatica, which is just Latin for irritation of the sciatic
11:09 – nerve. So
11:12 – you have this concept of a visceral versus somatic pain. So pains going away and
11:19 – radiating out are generally somatic whereas pain that’s radiating in is generally
11:25 – visceral. And these visceral pains are great dull aching pains. Bladder pains are
11:29 – visceral generally, and the problem with visceral pains is they get
11:33 – confused between things. So the bladder pathway, the uterus pathway, and
11:37 – the lower colon all share the same neurologic pathways to get up to the brain.
11:38 – So either any one of those organs can feel like all of them. And so if you have
11:45 – endometriosis in your rectum, you can have bladder pain if there’s nothing
11:50 – wrong with the bladder. If you have you have adenomyosis, you can have pain with
11:54 – defecation if there’s nothing wrong with the bowel because all these nerves come
11:59 – together. So these are the kinds of neurologic concepts that get elucidated in
12:03 – neuropelveology. So coming from neuropelveologists, you try to
12:04 – understand a little bit more specifically why someone is
12:08 – having pain. And sometimes that can create a different pathway of how you
12:12 – might treat it.
12:14 – For example, there are certain circumstances where a patient’s specific
12:19 – neurologic presentation would suggest that they have a lesion at a very specific
12:24 – nerve leg. Second sickle nerve, like if somebody’s having pudendal nerve
12:28 – symptoms but they’re also having pain that’s running down their leg, the inside of
12:32 – their leg, that already tells you that their irritation is in their second sacral nerve root
12:37 – because the pudendal nerve is formed by that root. But the sciatic nerve is also
12:41 – formed by that root. So when you have pain going down both ways, you know that the
12:46 – common pathway is where the problem is. So then you can start out by getting an MRI
12:52 – and making sure that they don’t have a problem at their spinal cord or their discs
12:57 – because that’s the classic reason why people have quote “radicular pain,” which
13:01 – means pain going down a particular nerve root.
13:04 – And that’s what the neurosurgeon always thinks it is, they think it’s a
13:08 – disc herniation or impingement. So you got to make sure it’s not that.
13:09 – But sometimes there’s actually endometriosis or vascular compression in
13:14 – the pelvis and that can be addressed. And so these are the surgical techniques
13:20 – involved with neuropelveology, actually being able to access the nerves in the
13:24 – pelvis, which are much deeper than what your typical expert endometriosis surgeon
13:29 – is doing, anyway. And a lot of endometriosis surgeons have come to
13:33 – explore neuropelveology. I think I’m the only one that’s actually certified in the
13:38 – United States. I might be wrong about that, maybe there are a few others, but not very
13:43 – many. So there is a formal training program with ISON in Switzerland and
13:49 – I’ve done part of that. There’s several more steps that actually got
13:55 – stopped by covid so we get back to it. But it’s an interesting field. I would say it’s very
14:00 – interesting intellectually. It does open some possibilities for treating some
14:08 – people who previously have not been able to be helped. I would caution people that
14:15 – it’s not
14:18 – the magic wand. To some extent it increases our understanding of why
14:24 – people have pain, and in some people it leads to us to have solutions that we didn’t
14:31 – previously have.
14:32 – There’s still lots of mysteries. There’s still lots of people that have pains that we
14:35 – don’t know how to fix. Even when you think about it from a neuropelveologic point of
14:39 – view.
14:40 – And neuropelveologic surgeries are also painful for the patient.
14:46 – When you start doing nerve dissection, it causes pain before it makes anything
14:50 – better. So
14:51 – it’s not something to just really say, okay, I want to go do this. It’s really like,
14:57 – you need a very, very specific case. And so I do have patients that are contacting me
15:03 – hoping that I’m the solution to their problems when they’ve had other surgeries
15:06 – and they’ve had other things and
15:07 – because I’m the quote “neuropelveologist.” Well, first of all, I’m not anywhere near the
15:08 – most experienced neuropelveologist in the world. There are quite a few that are more
15:17 – experienced than I am. But at the same time, it’s it’s not the magic wand. It’s not
15:22 – the answer to everything. So you have to find specific cases where we can apply
15:27 – these principles and we think we can be helpful. Other cases, we still go, probably
15:32 – there’s nothing we can do or we don’t really know what to do. And I loathe to do a
15:37 – surgery that I don’t know what I’m doing. Like if I really think that there’s something I
15:42 – can do that’s going to help, then I’m interested. But I’m not very interested in
15:47 – just messing around hoping to find the solution. I have not had a lot of positive
15:49 – experience doing those kinds of things.