becoming desperate

[Question]

Would very much welcome advice from experienced members. Very confused as still have not got to the bottom of my problem despite multiple investigation, including Potter MRI, Filler MRN and three nerve blocks. Symptons started off with just bottock pain last year and then in late April bottock pain with perineal/testicular tingling/burning/itching on sitting and some stinging after ejeculation. Only thing Potter MRI noted was venous congestion in distal part of Alcock's canal/dorsal area and FAI/labral tears while Filler MRN said he saw nerve irritation of Superior gluteal nerve/Pudendal nerve at level of sciatic notch/piriformis and spasm of Piriformis/Obdurator internus nerve irritation in Alcocks. S2 through piriformis also appeared to be irritated. Had two ischial spine nerve blocks - not really done much apart from an hours numbness after block. Prior to that had a caudal epidural - again no relief. Just had a piriformis nerve block/injection - let's see but not hopeful. Had physio/dr feel up my rectum for trigger points and muscle spasm but just came back as tight and did not reproduce my symptons. Only thing that reproduces symptons is sitting, lying down with legs crossed (although no bottock pain just perineal tingling) and breaking wind, which immediately triggers the testicular tingling but not bottock pain. Have no pain doing a number 2, though. Bizarre? If i stand all day I will only ever get mild tingling in perineum no bottock pain. The best is if I walk around all day or even better do excercise and then can hardly feel any pain/tingling. Physio says I have severe muscle imbalance with very weak glutes and tight front of leg muscles. Clearly something wrong here as not getting any better unlike other injuries. Please is you have any further advice would be very welcome as getting desperate!

[HerMajesty]

Hi,
I think you already have information that might well be significant and should act on the abnormalities that were found to see if your problem is improved or resolved. I don't know a ton about labral tears but I do know that they can cause significant pain syndromes and should be repaired. You do have piriformis syndrome and this should be addressed through whatever means works - PT, massage, injection (generally steroid is tried 1st and if that does not work then botox). The pudendal nerve can become entrapped within elements of the piriformis muscle. Dr. Filler likes to diagnose piriformis syndrome and then charge a fortune to inject that muscle, but any local pain clinic can perform guided piriformis injections. I know a number of individuals on this board have had varices, and you should search the term on this board. I am not sure if anyone has had them treated and / or if treatment of varices has lead to any reduction in pudendal pain.
Piriformis syndrome and pudendal neuralgia in general can be caused by pelvic / sacroiliac joint dysfunction (SIJD), and this is generally invisible on scans; if anything it will show up as a slightly widened pubic symphysis or a slightly deviated coccyx, but major joint dysfunctions might not show up at all. You have to have a hands on exam by a PT Manual Therapist to check for this. Also it may be significant that S2 is irritated as it enervates both the pudendal nerve and the piriformis. Was anything abnormal noted at the S2 nerve root or near it origination point? On my MRN Dr. Filler noted S2 tarlov cysts but discounted them as a factor. Turns out they are THE factor for me. For reasons such as this it would be nice to see the entire reports. You can scan them in as PDF documents and hit "upload attachment" on the lower right of the screen when replying, to get them displayed (I suggest making copies and blacking out personal identifiers).
Out of everything said, in my head I keep going back to the labral tears. A pudendal specialist might not be particularly excited about these but if you go to a general Orthopedist, you can get a better sense of their significance and whether they need repair. It really doesn't seem like you have nothing to go on: when abnormalities are found, i think it is important to correct them and then see if you feel better or if there is still more to be done.
Also I just want to say that the MRN and 3T MRI are fairly new diagnostic tools and while they can be helpful, I would not go so far as to say, "your imaging studies showed no entrapment so there must be no entrapment". You might be a candidate for decompression surgery regardless of what your imaging studies show. They are an informational tool, not a definitive diagnostic tool JMO.
You and I are rarities in that excercise helps us rather than exacerbating us: I did great with the same PT excercises that absolutely battered a lot of the patients on this board. And my pudendal syndrome turned out to be atypical too: Instead of having a scar tissue entrapment, I had a mechanical entrapment from SIJD which was reversed with good results, and I also have tarlov cysts at S2 which need surgical removal. I get the impression based on the benefit you derive from excercise, that you have some atypical underlying factors and you are going to need to customize treatment to match: You don't sound like you fit in "the box" but that doesn't mean you cannot chase down your pathology and have it corrected.

[Question]

HI thanks for the advice. Kind of going through the motions of having nerve blocks in specific places and see whether they match up with things from the scans (I had the ischial spine blocks just before and after the Potter and Filler scan). Have just had piriformis block/injection and have an Alcock's canal block lined up for October. If that doesn't work/give me some indication of what's wrong then will maybe move onto L5/S1/Hips/labral tears or SI joint. Re the SI joint I have asked docs about this but none them said I have symptons of SI pain although my Coccysx is just slightly deviated. I also don't really have any major hip pain apart from hip flexor tweek I did last week. Will try and upload the reports but when I tried last time it didn't work. Re the S2 that was at the level of Piriformis i.e. just before it becomes the pudendal nerve. Have had loads of Piriformis massage before and did nothing really long term - maybe just some short term mild relief but that was before my pudendal symptons.

[HerMajesty]

As I said, a slightly deviated coccyx on an imaging study can sometimes indicate a very complex pattern of SIJD that an imaging study will NOT pick up. I would seriously suggest locating a PT Manual Therapist to check your pelvic joints.
Also I don't know if you already do this routinely, but I always look down through all the topics for new posts, and I noticed if you take a look under the heading, "causes and effects of pudendal neuralgia", the 3 threads currently at the top are all about pelvic varices; and the most recent is about having them embolized. So definitely take a look at all of that.
Oh and additional edit: Not having S-I pain means NOTHING. I had severe SIJD with NO musculoskeletal pain. Doctor's just don't know how to evaluate a pelvis hands-on; you need a PT who specializes in Manual Therapy.

[shawnmellis]

Hi, My Potter MRI also shows venous congestion in distal part of Alcock's canal/dorsal area From what I have heard from patients and doctors, this is usually a sign of entrapment causing your veins to enlarge (Varices). There are a few cases where they varices have caused the entrapment, but mostly it is the other way around. I would see another PNE specialist such as Hibner or Conway to get a second opinion. You definitely should get a CAT Scan guided pudendal nerve block because it is the best way to diagnose pudendal nerve entrapment. It is possible that you may have an entrapment in your dorsal branch, because that is where Potter saw the Varices. The only person to see for that in the U.S. is Dr. Lee Dellon in Baltimore who does surgery for that. I just saw him and he said I was a candidate for surgery with him. I am going to get one more second opinion from Hibner to confirm if it is either both the dorsal branch and another branch, or just the dorsal branch, or another branch. It does not hurt to get a second opinion before rushing into surgery. I also have pain in my upper perineum sitting upright the most and if I sit for a long time, the pain radiates down the back of my inner thighs, possibly from the Varices( vein congestion) or from the nerve compression or both. When my pain is the worst I also have some urinary urgency problems. I also have pain in the scrotal area sometimes and pain in my left and right adductor muscle areas that connect my thigh to my pelvis, which is what I think started this. Hope this helps.

Shawn

[Violet M]

Question -- during your hour's numbness after your PN blocks was the pain gone? Could you sit without pain? The marcaine in the PN blocks doesn't last long and the diagnosis of PN is made based on whether you have even a very short time of pain relief. If you had numbness in the PN distribution area but still had pain then the diagnosis of PNE is typically considered questionable.

From what I'm reading -- your pain is in the distribution of the pudendal nerve and it's positional with sitting. Two big red flags for pudendal neuralgia. I agree with HM that the 3T MRI may not show an entrapment. There is no published reproducible data to show that it's 100% accurate.

[helenlegs 11]

If you PN me I have some hip labral tear information (pics) that Pomegranate sent to me, could e them to you. They may not be helpful but you never know.
When you say buttock pain is that in the distribution of the piriformis mainly? or more ischeal tuberosity?
Is your problem unilateral? and if so the same pain level on both sides?. (sorry you may have said this already) Are your P muscles different sizes at all?
All I can say about piriformis syndrome is I definitely know I have it, as they hurt but have a worst side as that is where the damage was done and one side is bigger than the other on a scan. When I had my piriformis block I nearly hit the roof with the pain, and I am northern How did you react when the needle hit that muscle? It would be good to be able to at least rule that or something out of the pain picture. What did the physio say re P muscle?
Dr F does seem to give the same diagnosis to all. Think we have already had that conversation . Donstore is having some treatment soon to try and address the varicies so he would be a good person to contact. From all you have said like violet, you definitely have PN symptoms it's a question of where is that coming from. Don't forget there isn't always just one reason behind it.
The other thing is that I did start with buttock pain (piriformis) and the pudendal bit wasn't noticeable at first a bit like you.
Sorry can't be any more help.