Hi,
My heads in the clouds (fog) so can anyone have a go at working out the mechanics of this?
On lying down one night, intense deep pain, deep in base of left side of penis. Couldn't stand it! So I turned over to lie on my side. Within say (30-60 seconds-I wasn't counting) the same precise pain had transferred to the perineum between testicles and back passage (at the same time the penile pain went away). I couldn't stand lying on my side either, so I returned to lying on my back (within say 2 minutes) and the same pain and intensity transferred back to its original spot-as described above. And it ceased in the perineum. This happened some monthes back during a massive flare and that's why I didn't post it then. The pain had never transferred like that before nor since. One reason being, I have never again tried lying on my side whilst in that terrible pain. I've had pn/pne diagnoses amongst a number of others.
Any clues why the position change was so dramatic? Obviously a nerve... And has anything like this happened to anyone else?
Cheers.
site of pain suddendly changes...
Re: site of pain suddendly changes...
in my opinion, these shifts and changes in the location and pattern of pain are significant in the early stages, because they may point toward the anatomical location of problem. Later it is not that significant because of the cross-talk of the nerves, a lot of reffered pain etc....I am also trying to analyse the onset of my pain and to remember exact triggers and patterns of pain.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
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Re: site of pain suddendly changes...
I agree that this can be a hint to the source of pain: sounds like whatever is going on structurally, the site of nerve compression changes positionally. The nerves involved could be the different branches of the pudendal nerve alone; or possibly, in addition or instead, the nerves in the inguinal canal. If this were me, my thinking would go in the following direction, although this is just a bainstorm: Probably not a scar tissue entrapment, or sacral nerve root pathology, as these would cause steady compression in one area. More likely a problem with other structures in the pelvis and / or inguinal area, impinging on the nerves. That would account for variable areas of compression depending on position. Suspects: occult hernia, generalized pelvic floor dysfunction with various muscles in spasm running as tight bands through the pelvis (and hence tightening the ligaments as well), or SIJD / pelvic joint dysfunction. Again just a brainstorm, but I would focus my detective work away from the nerve and toward adjacent structures. I hope that makes sense.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: site of pain suddendly changes...
Hi Her Majesty,HerMajesty wrote:I agree that this can be a hint to the source of pain: sounds like whatever is going on structurally, the site of nerve compression changes positionally. The nerves involved could be the different branches of the pudendal nerve alone; or possibly, in addition or instead, the nerves in the inguinal canal. If this were me, my thinking would go in the following direction, although this is just a bainstorm: Probably not a scar tissue entrapment, or sacral nerve root pathology, as these would cause steady compression in one area. More likely a problem with other structures in the pelvis and / or inguinal area, impinging on the nerves. That would account for variable areas of compression depending on position. Suspects: occult hernia, generalized pelvic floor dysfunction with various muscles in spasm running as tight bands through the pelvis (and hence tightening the ligaments as well), or SIJD / pelvic joint dysfunction. Again just a brainstorm, but I would focus my detective work away from the nerve and toward adjacent structures. I hope that makes sense.
The one "off positonal pain change" came from the massive pain flare in the weeks following a ganglion impar block The block came at the same time I was undergoing SIJD exercises following manipulations four weeks prior. The massive pain flare began abour 3/4 days after the ganglion impar block and after I recommenced SIJD exercises (to give coccyx a rest from the block just to be safe). My initial reaction was the ganglion impar block was the cause of the flare and pain over a widened area (immediate reation) .Also the pain had spread at the time (3/4 days after block) to include what I thought may be a hernia issue,too. Is this the inguinal canal issue you refer to? I think so. My PN PT treating my SIJ says he doubts very much that the increased problems came from the exercises. He recomended an MRN. You can see the results of that in Updates and Reviews. Meanwhile PN pelvic floor PT says I have pelvic floor myalgia after she did a rectal digital exam. So this oh so messy for me as i suspect more imblances, arthritis issues etc. But your analysis of the possible causes of the one- off positional pain change do resonate with me. Something quite dramatic changed after the ganglion impar block to which I retain an open mind (didn't initially-definitely block causal). Any follow up from Your Majesty is welcome and also from other members. Don't know if this is making any sense as the fog decended after my inital reply failed to upload (operator error I suspect). Perhaps concentrate answer on Her Majesty's POV but also other suggestions welcome. Stopping stretching exercises including one I've doing for years, and forced bed rest have helped. thanks. gottago leg pain too much..stabdinga at computer...don't sit nowdays ..typods/ not crying just sad.
Last edited by Jackson on Thu Apr 11, 2013 3:10 am, edited 1 time in total.
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- Location: North Las Vegas, Nevada
Re: site of pain suddendly changes...
Jackson, An inguinal hernia would indeed cause pressure on the nerves in the inguinal canal. The nerves in the inguinal canal, if I am recalling correctly, are ilioinguinal, iliohypogastric, and genitofemoral. The enervate many of the same areas as the pudendal nerve does, so whether due to a hernia or other cause they should always be ruled out as the source of neuropathy.
I did just look at your post about MRI results. If these are trustworthy, then it sounds like the nerve would need to be released from ligament entrapment through surgery, unless you are successful at reducing tension in the ligaments through PT. Of course, when you talk about positional changes in pain location: My assumption is that the MRI was done lying on your back. Perhaps on your back, the ligaments tighten in the area shown on the MRI, but when you turn, the impingement is elsewhere? That is one problem with imaging - it is static, not dynamic, that is, it doesn't show what happens when you move. A decompression surgery should release the entire length of the nerve though, so I think it might be effective if you can't realign and relax the pelvic structures through PT. Violet for example did very well with the surgery and I believe her issue was impingement on the nerve from strained ligaments and tendons.
I did just look at your post about MRI results. If these are trustworthy, then it sounds like the nerve would need to be released from ligament entrapment through surgery, unless you are successful at reducing tension in the ligaments through PT. Of course, when you talk about positional changes in pain location: My assumption is that the MRI was done lying on your back. Perhaps on your back, the ligaments tighten in the area shown on the MRI, but when you turn, the impingement is elsewhere? That is one problem with imaging - it is static, not dynamic, that is, it doesn't show what happens when you move. A decompression surgery should release the entire length of the nerve though, so I think it might be effective if you can't realign and relax the pelvic structures through PT. Violet for example did very well with the surgery and I believe her issue was impingement on the nerve from strained ligaments and tendons.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: site of pain suddendly changes...
Strained ligaments that were hardened/sclerosed. You have a good memory, HM.HerMajesty wrote: Violet for example did very well with the surgery and I believe her issue was impingement on the nerve from strained ligaments and tendons.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: site of pain suddendly changes...
Yes the MRI was done lying on my back for say 20 mts. I've got something to say but my leg pain is getting too much so I'll try again another time.HerMajesty wrote:Jackson, An inguinal hernia would indeed cause pressure on the nerves in the inguinal canal. The nerves in the inguinal canal, if I am recalling correctly, are ilioinguinal, iliohypogastric, and genitofemoral. The enervate many of the same areas as the pudendal nerve does, so whether due to a hernia or other cause they should always be ruled out as the source of neuropathy. My assumption is that the MRI was done lying on your back. Perhaps on your back, the ligaments tighten in the area shown on the MRI, but when you turn, the impingement is elsewhere? That is one problem with imaging - it is static, not dynamic, that is, it doesn't show what happens when you move. A decompression surgery should release the entire length of the nerve though, so I think it might be effective if you can't realign and relax the pelvic structures through PT. Violet for example did very well with the surgery and I believe her issue was impingement on the nerve from strained ligaments and tendons.
Re: site of pain suddendly changes...
Hi Her Majesty,
Probably better if I don't say what I had intended-given the benefit of a clearer mind.
cheers
Probably better if I don't say what I had intended-given the benefit of a clearer mind.
cheers
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Re: site of pain suddendly changes...
Try placing a pillow under your back while lying down. Make sure it is not necassarily under your back, but as low as possible without going past the pivot point of your hip joints. I slept like this for months. I rolled a pillow really tight (like an oriental throw pillow). Mind you I was under nearly 180mg of Oxycontin at the time, but I found within a week my lower back L1-5 worked out it's arthritis, the general dish shaped contour of my back flattened, and I was able to move the nerve away from the respective muscle structures. If that does not work, roll yourself a larger roll (about 24" around), and as long as your torso and head. Bend one end over on itself, and position this under your pelvis and between your legs. Lie down on this as if you are going to perform a yoga move (down dog, or something like that- I am not a real yogi). Hang you head over the end and support it with a pillow allowing your mouth and nose access to air akin to a massage chair. Make sure your knees are tucked up as far as possible under your belly as possible. I have had relief with this when absolutely no position has worked. Another option that my wife and myself have talked about that would be a more permanent solution would be one of those "sex chair/couches".
I have more temporary solutions, but I will have to go think about it some more.
I have more temporary solutions, but I will have to go think about it some more.