Health Organization for Pudendal Education

Hello everyone, while it seems a bit awkward to be reaching out on a forum like this, me being a doctor and all, it's one of those special problems where personal experiences seem to outweigh professional textbook advice. I couldn't find much useful advice among my colleagues, as nobody among them is able to point me in a proper direction. I nearly got operated on twice, once for a suspected inguinal hernia (which was later ruled out), second time for a (supposedly verified, but I have some doubts) varicocele, and naturally I don't think either operation would've helped my case. I could write a small book about all the crap I went through because of this really.

So my whole issue is that I've been having stinging pains approximately in the areas of my left pudendal nerve for about 3 months now. The pain is extremely dynamic and it can change its location and intensity within as little as a few minutes, and no two days are the same. The areas that I feel most commonly as painful are around the inguinal canal exit, the root and side of my penis, and along the side of the sacral bone, less commonly laterally from the anus towards the ischial tuberosity - all of these are exclusively on the left side, the right side is never painful. What especially likes to set the pain off is pulling my foreskin, for example after a leak. I don't do sports nor heavy lifting, in fact my lifestyle has been heavily sedentary both at work and at home. Particularily the sacral bone pain (in the absence of a significant disc hernia) seems to be quite suggestive to me of a piriformis issue or some other pelvic muscular problem possibly connected with the frequent sitting.

I have no other symptoms, and the pain isn't particularily strong - maybe a 2 or 3 out of 10. But the fact that I can't find any relief from it and its constantly shifting nature coupled with my difficulties of finding its primary cause is driving me crazy. I had something very similar a half a year ago (inguinal pain only though) and it went away on its own after a month or two. I had several MRIs done that I've browsed through several times and aside from a slightly bulged, non-compressing disc and some varices in my perineum (I've had hemorrhoids ligated twice), I found nothing too noteworthy, although browsing the muscles and other soft tissues without further idea of what I'm looking for is often a needle in a haystack problem and something might still be hidden there - if only I knew what area to look at.

So as people with firsthand experience of this, anybody dealt with something similar to what I describe? What next steps would you recommend? What worked for you the best?

Hello tq,

Well, I'm not male so I can't speak experientially to the exact symptoms you are experiencing. Hopefully some guys will come on the forum and respond.

Just from doing a little research on anatomy, it appears that the pudendal nerve and ilioinguinal nerve run near each other at some point. https://neupsykey.com/ilioinguinal-nerve/

And they both provide some innervation of the penis.
https://emedicine.medscape.com/article/ ... verview#a3
https://www.ncbi.nlm.nih.gov/books/NBK538256/

So, obviously that makes the diagnosis a bit trickier. Sometimes when you can't get answers locally it becomes worth it to travel, as many of us have. I recently had a conversation with Dr. Hibner to update his information on the website and he said that he does decompression of the ilioninguinal as well as the pudendal nerve. That's not to suggest that you have compression of either of those nerves, but he might be someone who could help you figure out what's going on. There are likely other doctors on our list, including some European docs such as Dr. Aszmann or Dr. Bollens, who could help you figure this out too, but I can't say for sure who would be the best. Before you go to any of them you can do a search in the upper right to read what other people said about them.

When it comes to what works best for people, it depends on the root cause and no two people are the same. If you have pelvic misalignment, you have to address that. If you have scar tissue from the hemorrhoid procedure, you have to address that. If you have a nerve entrapment, you might need surgery. You may have already read the Nantes Criteria article. https://www.pudendalhope.info/wp-conten ... iteria.pdf
So, maybe you need some more diagnostics to get this figured out before you get to the treatment stage.

Locally you might be able to see a pelvic physical therapist for an evaluation, who can do an internal rectal exam and press on pelvic floor muscles and nerves to see if there is a clear source of pain. Or you could see a manual therapist who can determine if you have some musculoskeletal anomalies that wouldn't show up on an MRI, that might be contributing to your problem. I was actually diagnosed with pudendal neuralgia by a PT, when none of the local docs had a clue. The PT knew right away, just by doing an internal exam. The PT was able to determine that I also had some problems like SI joint dysfunction and pelvic misalignment that didn't show up on the MRI and these were contributing factors.

You could try some nerve blocks for diagnostic purposes, knowing there is a slight risk involved. I'm not aware of many people who got better long-term from nerve blocks alone, but they can be helpful in the diagnosis.

Anyway, those are just a few ideas. Hopefully some other members will have some insights. Wishing you all the best in figuring this out.

Violet

Hi tq,

I'm sorry to hear about your pain and your struggles to diagnose it. I just wanted to add a couple points: the dynamic nature of the pain is pretty common with pn. My pain now tends to be in the same area, but it does vary somewhat, and I usually have no idea what triggers it. I also wanted to note that heat (heating pad) and ice are useful non-pharmaceutical forms of pain relief.

April

Thank you for your replies. I have some updates to make on my current status. While I'm not cured, I think I've finally found something tangible that I can grasp regarding this condition. I've managed to locate a pelvic floor therapist in my country, and together with my own experiences thus far, we seem to be leaning towards this being a deep pelvic muscle issue of some sort. The therapist discovered that my left (hurting) side pelvic muscles are weaker compared to the healthy right side, while normally you'd expect the opposite to be the case. I went again through my previous pelvic MRI, and found that 1. my left obturator internus muscle is somewhat thinner compared to the right, 2. my left ischiofemoral space is narrower, with some atrophy present in my quadriceps femoris which implies a chronic impingement upon the muscle. Still not sure if these have any relation to what I've been experiencing though. Could I have partially torn my obturator internus months ago without noticing it? Or is it just disuse/atrophy related? Difficult to say.

Most importantly, the pain has finally somewhat "organized" itself and instead of radiating somewhere else every other day, right now it's mostly concentrated in a specific point on the inner side of my ischiadic tuber (about 10-11 o'clock from the anus), which is actually very tender to the touch! I wouldn't say the pain has gone "weaker", but I feel like it's actually evolving somewhere, and being able to pinpoint the likely epicenter of the pain finally gives me something to work with. I've also had a bit of visible stool blood once, which would imply a hemorrhoid recurrence - any chance of being related to the PN symptoms?

Glad to hear you have found a good PT who is helping you figure some things out. When the PT does the internal anal exam is it tender when they press on the pudendal nerve? I remember that my worst PN pain was just medial to the ischial tuberosity - at about 9 o'clock via a vaginal exam. I'm not sure how they would measure that on a guy but your PT should be able to tell.

I've not heard of blood in the stools being related to PN but I guess if the hemorrhoids are painful it could cause nearby muscles to go into spasm and impinge on the pudendal nerve. But it seems like your pain would be on both sides if that were the case?

That's interesting that the left pelvic muscles seem to be weaker and somewhat atrophied. It leads you to wonder if there is some sort of impingement to blood vessels that supply the muscles as well as an impingement to a nerve. Some of those pelvic nerves and arteries travel together so if one has an impingement so does the other. Some physicians use Doppler studies to determine if the blood vessel traveling alongside the pudendal nerve is impinged on because if it is, then there is suspicion that the pudendal nerve has an impingement also. I don't know if Doppler studies can be done on any of the other pelvic arteries but maybe that's something you would want to research.

Good luck figuring this out and finding the right treatment. I would be interested to hear how things go for you.

Violet

It's great that you have a good pt. My pt was a great source of information for me, so I do think it's helpful even if the treatments don't create long term benefits. But, if your problem is muscle related, the pt might actually work as a treatment.

Since you are a radiologist, I thought I'd mention that a radiologist (Hollis Potter in NY) put together a protocol for MRIs to diagnose pn. I emailed her clinic and got the protocol and got my pcp to send it to the clinic ahead of time and they followed it. The technician told me they had to some homework to figure out how to get some of the images, and I actually think the radiologist was actually running the machine for part of it and assisting the technician during it (sounds unlikely, I know, but I think that's what was happening). In any event, you would be in a good position to get the protocol done correctly (if you wanted to do another MRI). If you can't get it from Potter's office, I have it a copy, so you can pm and I can send it. Here is the summary of the part of my report that (unlike most MRIs) suggested pn:

“Enhancing fluid and edema is in the posterior left side of the pelvis interposed between the left
ischial spine and the sacrospinous and sacrotuberous ligaments. The enhancing fluid extends
anteriorly and longitudinally along the medial surface of the left anterior obturator fascia
measuring 3.7 cm in length on the sagittal images. Finding is asymmetric where there is no
edema or associated enhancement. Findings are highly suggestive of pudendal nerve entrapment
by compression between the ischial spine and the sacral spinous/sacrotuberous ligaments.”

It sounds like your pain is in a different location but I thought you might be interested in seeing an MRI report that suggested pn.

April

Hello, another month or two, another update. The pain still persists, though it did a lot of development front and back during that time. At first the groin pain disappeared completely and I got new pains in the sacral area and the ischiorectal fossa, this made it quite taxing for me to sit at work. This mostly persisted until my latest visit at the PT, when during the exercises I felt and heard a few pops and less than an hour later I noticed like hey, I barely feel this anymore. And now it came back again as something different - I feel pain in my left lumbar area (L4-L5 height or so), and again pain in my genitals, but still only on the left side. This is kinda like what the pain was like almost 6 months ago. In the meantime I've searched for other possible causes, like perianal fistula (as in unrecognized Crohn's) - this was ultimately ruled out via a new MRI exam, but the MRI showed some secondary findings: perineal subcutaneous fat edema on the left side (where I had sharp burning pains at that time) and edema of my left quadratus femoris muscle. So I guess I have inflammation within these structures, but why? One possible culprit is the ischiofemoral impingement, but I seem to have that bilaterally, so...

I've also noticed that the penis pain most likely isn't radiating from the penis itself - I now believe it's my left ischiocavernosus muscle being constantly irritated somewhere in the perineal area.

That's hard when the pain is moving around so much. Often people with pudendal neuralgia have more than one thing going on, especially if there are musculoskeletal anomalies. The ischiocavernosus muscle is innervated by the pudendal nerve, so your theory that irritation of that muscle is causing the penis pain makes a lot of sense.

Have you seen this article? Not sure if it would apply to you....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5721376/

Violet

To be fair, it feels as if there were two primary components to my pains - one is located on the lower ridge of my buttock (could correspond to the quadratus femoris muscle and the IFI) and it's a more "deep" pain, usually not that painful and more like muscle soreness really. This seems to radiate into my inner thigh where it feels like skin inflammation (stinging pain which roughly correlates with the subcutaneous edema location I saw on the MRI). The other component radiates along my lumbosacral spine, and has been making various shifts lately - a week ago I felt it near the sacral dimple, and it has been steadily "climbing up", the pain would recede and shortly after I'd have a new pain 1-2 inches above it.

The highest point seems to be at my posterior superior iliac spine - I feel a tender nodule-like structure there which might possibly correspond with a proposed clinical unit I was unfamiliar with until recently, the "back mouse". I've asked several colleagues about back mice and none of them have heard of it before. Now I wonder - a back mouse is standardly associated with the superior cluneal nerve, but could the PN be related? Could a painful back mouse radiate into my pudendal nerve dermatoma somehow?

I took two hot baths in a row over the weekend and the pain seems to have felt a lot better for a while - sunday to monday night I felt almost pain-free. Right now it came back somewhat, but it's still present in one form or another, feeling the familiar unpleasant tingly tenderness on the lower buttock and penile skin. Lying on my back and slightly lifting my butt above the bed (effectively resting on my lumbar spine) with my knees bent feels like the most relieving position at the moment, though it can't be good for my lower back in the long term.

During the worst of my PN journey I had a lot of inner thigh burning pain on the right side which was my worst pain side. That pain is gone since my PNE release surgery so it must have somehow been related to the pudendal nerve. I felt like I had been hit with a baseball bat all over my lower buttock and perineum and eventually developed allodynia/burning there, but that is all gone now. The worst pain was just medial to the ischial tuberosity where the leg and perineum meet. Dr. Bautrant said the perineal branch of the PN was primarily affected in my case. Anyway, the point being is that pain can radiate significantly which makes it difficult to pinpoint the exact pain generator. But if you are having genital pain, that is one of the primary indicators that the pudendal nerve is likely involved somehow -- but how is the question.

This is from one of my previous posts about a back mouse. Dr. Antolak is a former urologist who specialized in pudendal neuralgia and PNE.

Violet M wrote: ↑Sat Feb 01, 2014 11:12 pm
According to Dr. Antolak a back mouse can be the cause of bladder pain but I don't know much about it. Seems like it would depend on where the back mouse was located. Another name is episacroiliac lipoma.

http://www.centerforurologicandpelvicpain.com/ (the information was taken from Dr. Antolak's website but this link no longer works because Dr. Antolak is now retired)

These articles indicate that a back mouse can cause urinary/sciatic pain.

http://www.ncbi.nlm.nih.gov/pubmed/2151647
http://www.ncbi.nlm.nih.gov/pubmed/3625290

So, it seems that yes, the pain from a back mouse can radiate.

Violet