00:00 – Dr. Fogelson: And there’s definitely a subset of people that have quote
00:02 – “interstitial cystitis” when I think they have pudendal neuralgia.
00:05 – Melissa: Same with vulvodynia and urethral syndrome, that seems to be the theory.
00:09 – Dr. Fogelson: Absolutely. Oh I think those things are often epidemic.
00:26 – Pudendal neuralgia is irritation of the pudendal nerve, which is a nerve that
00:30 – is innervated from the second, third, and fourth sacral nerve root
00:34 – on either side. And the nerve comes off of those roots. Also, the second sacral
00:40 – nerve, it also starts to form the sciatic nerve, which is going down the leg and
00:44 – then it gives off a little branch. And the third and fourth nerves give off small
00:44 – branches, and they form the femoral nerve. And so the pudendal nerve is a somatic
00:53 – nerve.
00:57 – It has some effect of contraction of the pelvic floor, or branches of it do. It also
01:01 – provides your skin sensation around your anus and on your vulva, the labia, and then
01:07 – up to the clitoris as well.
01:10 – And so the path of the pudendal nerve is a is a tortuous and defective path that was
01:11 – designed poorly, or evolved poorly. And it actually goes down the pelvis. And it
01:18 – goes between the sacral spinous and the sacrotuberous ligaments, which are two
01:28 – thick ligaments that connect our sacrum to the side of our pelvis. And for some dumb
01:34 – reason, this very important nerve goes right between them, like a little crusher
01:39 – sandwich there. And as long as you have plenty of fat in there, and you have plenty
01:44 – of space, it doesn’t seem to cause a problem. But in a subset of people, that
01:49 – space is really narrow, and they get pain there when they sit, and they will crush the
01:53 – nerve. Now, this is only one version of pudendal neuralgia, but this is the most
01:54 – common one. Where classically the horseback enthusiast or the chronic
02:01 – bicyclist has been compressing this nerve for so long that eventually they’ve caused
02:08 – the nerve to be inflamed. And so about 85 percent of pudendal nerve entrapment
02:16 – cases are at that ligament right there. Probably some combination of
02:21 – a behavior like riding a bike a lot, and then a predisposition, an anatomical
02:26 – predisposition, so people that have that kind of pudendal neuralgia will have pain
02:31 – when they sit. Sometimes it can be really bad pain, to where they don’t even sit or
02:36 – they sit on a cushion all the time. They have pain, they have pain in their coccyx,
02:41 – pain in their rectum, they may have pain in their clitoris or their vagina. And then men
02:46 – get this also, so they have penile pain and sometimes sensory loss in their penis.
02:57 – They still can get an erection but they don’t feel as normal as it should. And
02:58 – there’s a variety of sexual dysfunctions that can occur. And there are other kinds
02:58 – of pudendal neuralgia that are not structurally caused by compression. And
03:04 – they’re probably caused by inflammation, like endometriosis inflaming that area can
03:10 – cause pudendal neuralgia also. It’s a very difficult condition to treat, like I
03:17 – was telling you about. Like how
03:20 – chronic colonized bladder UTI is something not a lot of people want to deal
03:21 – with and they don’t know how to deal with it. Not a lot of people want to deal with
03:21 – pudendal neuralgia either because we’re not very good at treating it. I know a lot
03:31 – about it, I think I understand it better than most doctors do, but there’s still only so
03:37 – many things we can do about it and sometimes they’re not really that effective.
03:42 – You can do pudendal blocks where you
03:45 – block the pudendal nerve with local anesthetics that will lead to temporary
03:46 – relief. In some people, it leads to longer term relief. But in general it’s more
03:52 – diagnostic in nature. We can put steroids around the pudendal nerve, which does
03:57 – help in some people. We can put Botox around the pudendal nerve, which I think
04:00 – does help quite a bit, actually. And that’s probably my number one thing because it’s
04:05 – relatively inexpensive, it’s relatively non-invasive,
04:09 – it doesn’t cause a lot of problems.
04:12 – Melissa: How long do those last? Those like nerve blocks or Botox?
04:15 – Dr. Fogelson: Well, nerve blocks only last for a matter of hours, really. In some cases
04:19 – they can seem to work for weeks, if you have a nerve that’s really, really inflamed
04:25 – and it’s just constantly firing
04:26 – by some mechanism that we don’t understand. And there’s lots of stuff that
04:26 – we don’t understand. But by some mechanism, if you can block the nerve for
04:33 – six hours, which is chemically just turning that electricity off,
04:39 – what it does is it just totally depolarizes the nerve. It opens up all the channels so
04:39 – all that chemical signaling just leaks out, more or less. And the nerve just basically
04:40 – becomes
04:48 – dysfunctional in a good way. It just gets displaced. It doesn’t work anymore. Until
04:48 – that local anesthetic is consumed and wears off, the nerve is just broken. And so
04:55 – you get profoundly numb. And as you go to the dentist, you get a block in your mouth,
05:02 – you can get your tooth drilled on, it doesn’t hurt. It does the same thing. So if you’re
05:08 – blocking the pudendal nerve,
05:11 – you’ll get temporary anesthesia. But if you have a nerve that’s really, really inflamed
05:11 – and you block it for six or eight hours, there seems to be at least in some people a
05:19 – longer term effect where you’re almost hitting the reset switch or you’re rebooting
05:23 – the computer on the nerve. And when it wakes up again, it’s not quite as irritated.
05:27 – But it doesn’t work in everybody. But I have seen some people that claim that the block
05:31 – lasts for months and I don’t know why but it does seem to.
05:34 – Melissa: I’ve heard things like that. See, that’s why I’m interested in it. A lot of
05:38 – people have this question of whether a nerve problem causes their UTI symptoms
05:41 – or if the UTI caused the nerve problem. Is there a way to differentiate that or does it
05:46 – matter? Do you just have to address both anyway?
05:49 – Dr. Fogelson: Well, I think that if you don’t have any bacteria in the bladder, and you
05:53 – do a cystoscopy and you look inside the bladder and it looks normal, then I’m going
05:57 – to assume it’s the nerve problem causing it. If there’s a problem in the bladder, it
06:02 – should be apparent. The bladder has a mucosa you can see with the scope. And if
06:06 – it looks normal, then it’s normal. And if you can’t grow bacteria or get DNA of
06:10 – bacteria in the bladder, there’s no infection. So at that point, it’s definitely the nerve
06:22 – causing the bladder symptoms. And there’s definitely a subset of people that have
06:23 – quote “interstitial cystitis” when I think they have pudendal neuralgia.
06:25 – Melissa: Yeah, I’ve been wondering the same with both vulvodynia and urethral
06:28 – syndrome.
06:29 – Dr. Fogelson: Absolutely. Oh I think those things are often pudendal neuralgia.
06:33 – Melissa: Yeah, which doesn’t leave people with a lot of options it sounds like for
06:37 – treatment. Is there is there a long-term hope for people that have those kinds of
06:44 – issues?
06:44 – Dr. Fogelson: Well, yeah, to some extent. Nobody is the the master of this. There’s
06:48 – not some Svengali that has the answer to all this. There are people that claim they do
06:52 – but I don’t. I think you will find plenty of people that have had treatment from this
06:56 – expert or that who had failure from whatever treatment they recommended.
07:03 – So there’s doing nerve blocks, there’s doing local anesthetics, there’s doing
07:07 – steroid injections, they’re doing Botox injections. Physical therapy I think is really
07:07 – important. Some people have really just a tight pelvic floor and the nerve does
07:08 – traverse through part of the obturator internal muscle so if that muscles in
07:17 – spasm, it can compress the nerve. So if we can get that muscle to relax, that can lead
07:23 – to healing of the nerve over time. We can put Botox in the muscle also. Then there
07:29 – are nerve decompression surgeries also.
07:33 – And so pudendal nerve decompression surgery is a surgery where basically, by a
07:33 – couple of different approaches, you basically sever the sacral spinous ligament
07:42 – and remove that ligament, which now you have this sandwich these ligaments where
07:46 – the nerves going through. Well, now you just remove the top off of it. So now the
07:51 – nerve is just loose in there. And hopefully if the nerve is truly compressed and you do
07:56 – that, then you give the nerve an opportunity to heal. But again I say that’s six to 12 to 24
08:08 – months. It’s not something that works overnight and it’s extreme. My experience
08:08 – has been is that it’s very painful for patients when you do the surgery.
08:12 – It’s quite painful. You’re basically creating a grade three sprain in your butt. If
08:18 – you’ve ever had a horrible ankle sprain where you tore your ligaments in your in
08:18 – your ankle, it’s extraordinarily painful.
08:26 – Melissa: That sounds like it.
08:28 – Dr. Fogelson: You’re doing that surgically. So you’re literally severing a ligament. So
08:35 – that’s a grade three sprain. And the problem with the surgery
08:36 – is that the documented success rate of these surgeries is about 50 percent.
08:42 – But half the people get better and half the people don’t. I don’t think that it works half
08:43 – the time, I think that it works 100 percent of time in half the people. And the
08:52 – distinction of that is that 50 percent of the people didn’t have the problem we
08:52 – thought they had.
08:58 – Melissa: Yeah, that’s another question, how how can you test for this? And you said
09:02 – the nerve blocks can help because it can help identify the location of the problem, I
09:07 – suppose.
09:07 – Dr. Fogelson: I don’t know if it helps or not because if I block the root of the pudendal
09:12 – nerve, anywhere along there is going to get blocked. Because it’s like, well, if I stop the
09:19 – traffic and the cars are backed up for miles. Well, I don’t know where the problem
09:24 – was, so I’ve stopped it in one place. If you block it very distally and then you’re getting
09:29 – pain, I guess you could infer something from that. But there really isn’t… local
09:35 – anesthetic spreads out, I don’t think it’s possible to block
09:39 – the nerve in one location. I think the anesthetic is going to get absorbed into
09:43 – the nerve, it’s going to translocate all the way up the neurons, so I think you’re going
09:48 – to block the whole nerve. Now,
09:53 – part of this quote “Nantes criteria” for pudendal neuralgia is that if you do a
09:57 – block, they should have relief of their pain. But really, all that means is that the pain is
10:02 – coming through the pudendal nerve. It doesn’t necessarily mean why is the
10:06 – pudendal nerve is
10:06 – inflamed or even if I were to block your pudendal nerve and then I take a needle
10:06 – and poke you in the vulva, you won’t feel it. But that’s just anesthesia. That’s not
10:13 – saying that you have pudendal neuralgia, I literally anesthetized the area that I’m
10:20 – poking. And so
10:23 – it is difficult to say that just because the pain goes away from a block, that you have
10:23 – quote “pudendal neuralgia.” All it really says is that your pain is traveling through the
10:24 – pudendal nerves.
10:32 – It doesn’t say that the nerve is dysfunctional, in my opinion.
10:36 – Melissa: Yeah, that makes sense.
10:37 – Dr. Fogelson: And so
10:40 – now you have to put together, when did the pain start? Did it start right after a
10:41 – surgery? Did it start after a birth injury? Did it start from a bad fall? If there’s
10:53 – some moment in time where the pain started, then I think that you’re far more
10:58 – likely to have success with surgery because something happened. You got a
11:02 – hematoma around the nerve, you got a suture through the nerve root at a surgery,
11:07 – like something happened. When it just developed over a long period of time, I
11:12 – think it’s harder to imagine what
11:15 – what you’re going to do surgically. Unless they’re a bicyclist or a horseback rider or
11:16 – something and they clearly have just been banging on the nerve forever and now if
11:19 – you unroof the nerve and decompress it, we’re going to give it a better chance to
11:28 – heal. But to some extent you could also say, well just stop riding a bike, and stop
11:32 – riding a horse, and you’re probably going to give it a chance to heal also. I think the
11:36 – single most important thing you can do
11:41 – in pudendal neuralgia as a patient is stop doing the things that make it hurt. I
11:46 – think to push through the pain is a terrible idea because the nerve is getting injured,
11:46 – it’s hurting because you’re chronically injuring the nerve. And so if it hurts when
11:53 – you sit, don’t sit. And that sounds kind of terrible. Or at least sit on a cushion or
11:54 – something.
12:02 – When you’re doing something that is making it hurt, then you’re injuring the
12:03 – nerve. And so you’re declining to let it heal. You’re not blaming the person. But I just
12:10 – think that
12:14 – you’re doing the wrong thing if you wanted to get better.
12:18 – Melissa: We did get a few questions around this because some people have
12:20 – symptoms after sex. They can’t tell if it’s to do with infection or if it’s a nerve problem.
12:25 – Is that the same advice then, just don’t do it? it’s not very realistic
12:28 – for long-term.
12:30 – Dr. Fogelson: I don’t think in that case they’re injuring it having sex. I think that
12:36 – they’re having sensory issues in the vagina
12:41 – caused by their pudendal nerve pain and that they’re perceiving that because of that.
12:41 – I don’t think they’re injuring it having sex. Most likely. But I think that if it hurts when
12:48 – you sit, you probably shouldn’t sit for a long time. If it hurts when you ride a bike, don’t
12:49 – ride a bike.
12:57 – Which is tough for people to hear, if they like to ride a bike.
13:05 – The stuff I do, pudendal nerve decompression surgeries, it’s a difficult
13:12 – surgery to recover from. And as a doctor, it’s difficult to decide when you want to do
13:12 – it. Because what I know is that if we just do that surgery on everybody that meets
13:19 – certain criteria where they have pudendal neuralgia, they get better when they get a
13:24 – block, they meet other kind of Nantes, you do some other things and it doesn’t work.
13:30 – Okay, let’s try pudendal nerve decompression. It’s going to work half the
13:34 – time but it’s going to hurt everybody.
13:39 – So for half the people, it’s going to make them no better or maybe worse, and for
13:40 – half of people it’s going to help them over time. So as a doctor, it’s kind of hard to
13:48 – recommend that.
13:52 – The good thing is in my practice, we do it laparoscopically. So I think that a
13:56 – lot of the morbidity from that surgery comes from the approach, which is that
14:00 – classically that surgery is done with a patient in the prone position. They’re lying
14:00 – on their front and you cut through their butt, basically the epidermal nerve. And
14:06 – you actually have to sever the sacrotuberous ligament to reach the
14:09 – sacral spinous ligament. Which is crazy because there’s nothing wrong. You’re
14:14 – literally cutting two ligaments, and one of them is just associated with the approach.
14:17 – It’s not even what you’re trying to do. So you can reach that same location
14:17 – laparoscopically. It’s a very deep, dark hole that not a lot of people understand how to
14:28 – reach, but I do. And as part of neuropelveology you learn that. So I think
14:32 – that the laparoscopic approach makes a lot more sense because it’s a lot less
14:37 – morbid. So at least we’re not creating this permanent scar in your buttocks that’s
14:51 – going to hurt forever, or for a long time, and you can’t sit for months because someone
14:52 – has basically cut right into your bottom. There’s definitely people that I’ve operated
14:52 – on in purdendal neurology that a year later they say, I’m definitely better than I was
14:59 – before surgery. They’re not 100 percent better, I’ve never seen anybody get 100
15:03 – percent better, but I’ve had people who at six months were not better who at a year
15:07 – said, yeah I’m a lot better, and I’m definitely able to do things I wasn’t able to
15:12 – do before surgery. Which is success. Unfortunately, people do not seem in any
15:17 – kind of short time frame to ever say, it’s completely gone. But that may happen
15:21 – over years, many years. And I think that’s the case over all kind of nerve injuries. You
15:27 – have to have almost like a geologic time frame over how long it’s going to take this
15:32 – stuff to heal. And it takes a lot of faith that is going to happen eventually, both as a
15:37 – person and as a doctor. Because as a doctor, when you tell someone it’s going to
15:41 – get better in a year,
15:43 – you’re kind of like, am I blowing smoke here? Is this even true?
15:47 – Melissa: Yeah, that’s a long time.
15:51 – Dr. Fogelson: So that’s kind of the progression of things you can do for
15:55 – pudendal neuralgia.
15:57 – I think physical therapy is really important too if there is pelvic
16:01 – floor spasm. If there’s not pelvic floor spasm, then I don’t think it’s going to help.
16:06 – Melissa: Do you refer patients to specific therapists in that case or is that something
16:06 – they have to do on their own, to find someone?
16:09 – Dr. Fogelson: Well, I refer them. At least in my community, I know five or six really
16:11 – good people, so I try to send them to someone that’s sort of near where they
16:16 – live. And the most important thing to me is a physical therapist that is knowledgeable
16:22 – but also communicative. So that I can have a conversation with (usually) a woman and
16:28 – we can have a discussion about, what are they perceiving? What are we
16:37 – perceiving? Because
16:38 – I prefer that kind of relationship with a physical therapist, rather
16:40 – than just sending them out into the ether and I don’t hear back from them.
16:47 – To me, that’s usually a physical therapist that’s in a private practice
16:50 – that runs their own business rather than one works for some hospital machine.