Dear folks, I would like to ask you, about your experiences with delayed pain.
I feel that this might be a clue to the onset of my problems in 2009-2010....I had several episodes of DELAYED pain in my genital/pubic area, before my pain became chronic and constant. First few times it was after sex, then also after tennis playing, long driving etc. The pain came cca 24-48 hours after stimulus (longer intercourse etc.), never immediately. Then pain after 7-10 days faded away, before it became chronic in late 2010.
My question is: do you think that delayed pain points clearly to neuralgia? or it migth be also muscular related? I was asking many doctors, the answers were not conclusive, e.g. my physiotherapist said that especially in pelvic region, also muscles and general pelvic floor might react with some latentia, lets say 1-2 days...
I have never had pain/problems during the sex and immediately after that, never till the next day...Strange enough.
Is this DELAYED pain clear indicator of neuralgia? Or this is not a proof? what do you think and what are your experiences with delayed pain?
Delayed pain
Delayed 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
Re: Delayed pain
Yes, it was very much the case especially at the beginning. Even sitting did not have an immediate effect. But after a few years it was not so much the case anymore and the correlation became instantaneous.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Delayed pain
I have always been a delayed pain gal and definitely a neuralgia patient vs. muscle related pain, but I am not sure if you can "tell" the cause of the pain just based on whether it is immediate vs. delayed. But throughout my experience with neuralgia it has always been delayed for me - AFTER driving, sex, excercise, heavy lifting, etc, never during.
Last edited by HerMajesty on Mon Dec 24, 2012 9:28 am, edited 1 time in total.
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: Delayed pain
Delayed pain for me too. Burning pain usually occurs several hours or the next day after certain activities and I think it's neuropathic pain
Violet
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: Delayed pain
Me too. Even with PT, I'd leave feeling no better (sometimes just a little worse) and then the next day(s) I'd feel like I'd been run over by an 18 wheeler. Same with the nerve blocks, chiro, massage, etc ....HerMajesty wrote:I have always been a delayed pain gal
Best,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Delayed pain
Thanks for the answers...
I have totally same experience. Not so much now, becuase of chronicity, the worsening is immediate after PT, sex etc...
But in the beginning - pain sometimes came 48 hours after stimulus - I was totally scared how the hell the pain can be so much delayed...e.g. 2 days after sex I had no problems and then the neuropathic pain - pin and needles - came and lasted 7-10 days before it subsided. Now I know.
I have totally same experience. Not so much now, becuase of chronicity, the worsening is immediate after PT, sex etc...
But in the beginning - pain sometimes came 48 hours after stimulus - I was totally scared how the hell the pain can be so much delayed...e.g. 2 days after sex I had no problems and then the neuropathic pain - pin and needles - came and lasted 7-10 days before it subsided. Now I know.
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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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Delayed pain
Yes flyer same here, definite delayed pain.
My theory for this is that muscle and scar tissue related nerve pain is a slightly 'softer' entrapment/irritation than say a herniated spinal disc entrapment. I have had one of those in the past (S1/L5) so I know the immediate agony of a sneeze or bend etc with this diagnosis. Fortunately with this spinal problem there is a tried and well tested surgical solution, which I also took advantage of
.
Every nerve is supposed to move and glide within the body to an extent and I think even within it's protective outer sheath so it can stand a fair bit of 'mashing' before pain sets in. I also think that as time goes on the pain does become more constant and immediate (or maybe less delayed) although good pacing can offset both to an extent.
Just my own thoughts on this however.
Helen
My theory for this is that muscle and scar tissue related nerve pain is a slightly 'softer' entrapment/irritation than say a herniated spinal disc entrapment. I have had one of those in the past (S1/L5) so I know the immediate agony of a sneeze or bend etc with this diagnosis. Fortunately with this spinal problem there is a tried and well tested surgical solution, which I also took advantage of
.Every nerve is supposed to move and glide within the body to an extent and I think even within it's protective outer sheath so it can stand a fair bit of 'mashing' before pain sets in. I also think that as time goes on the pain does become more constant and immediate (or maybe less delayed) although good pacing can offset both to an extent.
Just my own thoughts on this however.
Helen
Last edited by helenlegs 11 on Wed Jan 02, 2013 10:09 am, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Dizzyblonde
- Posts: 32
- Joined: Wed Nov 14, 2012 10:51 pm
Re: Delayed pain
Can anyone tell me if they know of anyone who has had PN surgery still getting delayed pain (or any personal experiences by post-op patients)? After recovery phase, does one need to always be mindful of triggers? I would assume so but don't know enough about post-op restrictions if any. 
Judy
Judy
Bladder prolapse surgery 1992; hysterectomy & 2nd prolapse surgery next 6 years. PN started 1992 but managed well. Flare in March 2012 ignored signs from prolonged sitting & exacerbated by UTI. PT so far unsuccessful. Two bilateral blocks only right side positive for short time MRI showed PNE left side. Results conflicting so proposed nerve stimulater implant with bilateral PN release to cover all scenarios. Might go ahead approx Feb 2013 Housebound..300mg Lyrica x 2 daily &5mg Endep
Re: Delayed pain
Judy, I continued to have delayed post-op for at least 18 months but slowly most of it has faded. I still have to be careful to avoid certain activities, especially anything that strains the pelvic ligaments or sitting for long periods of time in the wrong chair.
Violet
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: Delayed pain
Hi Folks
My reaation is different ...My anal pain is on contact so that I either tolerate it by kinda kneeling on a stool type chair if we are out, or just jump up and stand.
I then usually have more pain afterward. ,right afterward. Then it goes back to baseline.
My standing pain in anal area occurs soon after I am up and about for the day.
When My pain first began a few years ago it was mild and only occurred when sitting--- in sit bones (pain in icshial tubes and sometimes the right perieum)). It would stop as soon as I got up and walked....
Surgery to address the icshial tube pain ....(re-section of posterior femoral cutaneous nerve and inferior cluneal) brought on my current pain about 3mos post surgery... assumedly scar tissue.
I feel like like I present differently than most folks so its hard to know exactly whats going on... various diagnosies...
My reaation is different ...My anal pain is on contact so that I either tolerate it by kinda kneeling on a stool type chair if we are out, or just jump up and stand.
I then usually have more pain afterward. ,right afterward. Then it goes back to baseline.
My standing pain in anal area occurs soon after I am up and about for the day.
When My pain first began a few years ago it was mild and only occurred when sitting--- in sit bones (pain in icshial tubes and sometimes the right perieum)). It would stop as soon as I got up and walked....
Surgery to address the icshial tube pain ....(re-section of posterior femoral cutaneous nerve and inferior cluneal) brought on my current pain about 3mos post surgery... assumedly scar tissue.
I feel like like I present differently than most folks so its hard to know exactly whats going on... various diagnosies...