pudendal nerve and the spine

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
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helenlegs 11
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Location: North East England

pudendal nerve and the spine

Post by helenlegs 11 »

Hi All,
I am trying to establish whether the statement below is true or not. I know we have some extremely clever people here who's nerve knowledge :) is fantastic because of the problems we are faced with, having to be own own advocates plus those that are medically trained etc
The reason I am asking is because I am going to see my GP on Wednesday and I want to be sure of my medical facts so PLEASE correct me if I am wrong, I don't want to look like a fool :oops:

I have no lumbar spine impingements (did have old back problem,repaired and fine after surgery 10 years ago, at S1/L5) or any sacrum problems on imaging, yet I do have genital numbness, genital burning, neuro itch, knife like feeling in rectum. . . .Ooops better point out that this is not all at the same time thank goodness.
Anyway the list goes on. . . feeling of skewered labia, pathways of burning or tingling pain in buttock and perineum (you've guessed it following the PN path :) ) I won't bore you any more but it's all pudendal related. Oh the weirdest one is clitoral pain when pressed (shoots along the top back of my leg)
With this pudendal pattern and of course the sitting pain, could this ever be associated with a lumbar spine issue??
My take is absolutely no, because the PN is S2-S4 and mainly S3.
As many know I have been daignosed with piriformis syndrome and nerve entrapments at that level, which makes perfect sense given my symptoms. I just need to be able to tell this to my GP with a little more 'proof' i.e. the lumbar spine can't be responsible for pudendal problems.
Thanks to all who give it a go. I really need your help, even if I am wrong (probably especially then)
Take care
Helen
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.
HerMajesty
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Re: pudendal nerve and the spine

Post by HerMajesty »

The nerve roots affected by a problem at L5/S1 do not enervate the area affected by pudendal neuralgia: They affect the glutes, legs, ankles, feet. However if your pathology goes beyond compression / radiculopathy of the nerve roots and effects the spinal cord, in theory it could have an impact on everything below the level of the injury. For example if the vertebra is displaced and putting pressure on the spinal cord at the L5 / S1 level.
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.
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helenlegs 11
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Location: North East England

Re: pudendal nerve and the spine

Post by helenlegs 11 »

Thanks HM,
That is how I understand it too. I have no nerve impingement showing any where in my spine. There is a tiny bulge at L4/L5 but I think at 56 that's almost to be expected. Thanks for your response.
Helen
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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Karyn
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Re: pudendal nerve and the spine

Post by Karyn »

Hi Helen,
Yes, it's extemely frustrating trying to get the medical professionals to think outside of that "lumbar spine box". I wouldn't mind so much, if they had any other explanations to offer.
May I suggest bringing an anatomy diagram of the PN with you? I can't imagine that you haven't already done this, though. Something else that may be helpful is this dermatome map:
http://www.backpain-guide.com/Chapter_F ... pathy.html
I wish you the best with your appointment. Please let us know how it went!!!! Is this the appointment related to Dr. V's letter????
Hugs,
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.
HerMajesty
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Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: pudendal nerve and the spine

Post by HerMajesty »

In addition to Karyn's suggestion of bringing in an anatomy diagram of the pudendal nerve, if you do an image search if "S1 / L5 Radiculopathy", a ton of pretty pictures pop up showing what those nerve roots DO enervate. You school that Doctor, Helen! :lol: I had a thoracolumbar MRI just to rule stuff out and it came back with asymptomatic disc wear n tear in a few places; that was before I turned 40 and I was told it is ordinary / typical as i am sure the bulge you have at L4 / L5 is.
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.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: pudendal nerve and the spine

Post by helenlegs 11 »

Thanks girls,
Good advice as per :D I haven't dared take any anatomy pics in as I though my GP may blow a fuse, she is always right it seems and I always wanted to try and keep her sweet, not that I ever managed it :lol:
But you are right a bit of back to med school for you lady, with your new tutor, the woman with the slight limp from round the corner. Think I will just about push her over the top, or round the bend. I am going to take in a list of my symptoms too and match them up to particular nerves. How very dare I !!
Maybe when I get my overhead projector out and start my presentation, she may realise I'm not there for an ordinary appointment. ;) Wish me luck (I am really scared :oops: )
xx(hugs)xx
Last edited by helenlegs 11 on Fri Aug 31, 2012 8:29 pm, 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.
janetm2
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Location: Maryland

Re: pudendal nerve and the spine

Post by janetm2 »

Helen,
All the luck in the world to you, you go girl! We all support you and have the fingers crossed.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Anne smith
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Joined: Wed Feb 08, 2012 12:44 pm

Re: pudendal nerve and the spine

Post by Anne smith »

Hi Helen
Had panic a while back(thought you were going to leave us) I am involved with support with ostomys sufferers! Many kindly say that my to hell with it atitude(not always in private) makes a difference ??
Well when I first found this site, along with the "other girls" you made a difference to me. So in gratitude I wish you luck with your g.p go for it! There not going to call securaty (middle aged lady)sorry? (wanting your total attention for fifteen minutes) " sorry guff I'm guilty" it hard Helen when you are by nature a pleaser but they don't feel our pain !!
Good luck Helen
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: pudendal nerve and the spine

Post by HerMajesty »

:lol: Bring in a flash drive with a power point presentation :lol: All the best to you Helen and let NO ONE intimidate you; you are obviously exponentially more educated on this subject than is your Doctor, as any self advocate needs to be. So walk the walk and talk the talk! :D
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.
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Violet M
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Re: pudendal nerve and the spine

Post by Violet M »

Helen, I would be interested to hear what you hope to accomplish from this visit to your GP. Are you needing a referral, meds, etc.? How you approach it may depend on what you want to get out of it.

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.
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