Pudendal Nerve Neuralgia

Posted by 1mepnurse @1mepnurse, Mar 23 10:06pm

OMG, it's horrible. Your perineum area in ' on fire 24 / 7 & your rectum feels like U have a golf ball in it. Having BM' s is difficult & then hurts afterwards, for a good while !
The upper back thighs are very sensitive to touch, as if u had shingles
There are no real answers are cures.
I SURE WOULD like to chat with others, that may have this !!
PRAYERS for research & ANSWERS, anyone !! Thx u.

@1mepnurse I'm so sorry you have this that's horrible

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@1mepnurse I agree with @lioness, that does sound terrible.

Members @deneenm & @glenbard have discussed a similar topic in the past and may be of help.

Below I have linked similar discussions that you may find useful and you may wish to scroll through them.
– Postherpetic Neuralgia (Shingles) nerve damage https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Has anyone here had or know about Pudendal Nerve Entrapment? https://connect.mayoclinic.org/discussion/has-anyone-here-had-or-know-about-pudendal-nerve-entrapment/

May I ask how long these symptoms have been going on? Was there a gradual or sudden onset?

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Pudendal Nerve Pain Treatment

Has anyone had this condition and gotten help? If so did the pain go away? What kind of Dr did you see and how do they diagnose? Thank you.

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@mmoss I'm assuming that you are having this issue and I'm sorry to hear that.

I moved this question to an existing discussion so you could connect with members like @1mepnurse @deneenm & @glenbard

Here are three related discussions I referenced earlier but they seem pertinent to you now.
– Postherpetic Neuralgia (Shingles) nerve damage https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Has anyone here had or know about Pudendal Nerve Entrapment? https://connect.mayoclinic.org/discussion/has-anyone-here-had-or-know-about-pudendal-nerve-entrapment/

May I ask what kind of a provider you have seen already?

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@erikas

@mmoss I'm assuming that you are having this issue and I'm sorry to hear that.

I moved this question to an existing discussion so you could connect with members like @1mepnurse @deneenm & @glenbard

Here are three related discussions I referenced earlier but they seem pertinent to you now.
– Postherpetic Neuralgia (Shingles) nerve damage https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Has anyone here had or know about Pudendal Nerve Entrapment? https://connect.mayoclinic.org/discussion/has-anyone-here-had-or-know-about-pudendal-nerve-entrapment/

May I ask what kind of a provider you have seen already?

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Pelvic Floor Therapy helps some.
My pain Dr injected my Pudendal nerve twice, but NOTHING changed, so it's apparently some other unknown nerve. God love & help all others with these symptoms…Gabapentin helps SOME, but sadly, gaining weight.
Upper back thighs have burning ( like shingles)…some times worse than others.
We sure need RESEARCH for answers ! Praying.

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@mmoss When you mention burning I'm in P.T right now for front thighs that are burning I go today its been a week of exercise he gave me to do at home .I had to ask Dr for referral he wanted to do surgery but therapy is helping me maybe it will help you. For urine smell Are you drinking enough water ?

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@1mepnurse

Pelvic Floor Therapy helps some.
My pain Dr injected my Pudendal nerve twice, but NOTHING changed, so it's apparently some other unknown nerve. God love & help all others with these symptoms…Gabapentin helps SOME, but sadly, gaining weight.
Upper back thighs have burning ( like shingles)…some times worse than others.
We sure need RESEARCH for answers ! Praying.

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There are several pudendal nerve strands IN THE SAME AREA ! THAT IS WHY YOU NEED HIGHLY TRAINED/ EXPERIENCED ANAESTHETIST TO PERFORM THIS PROCEDURE. THEY CAN ASSES WHICH ONE iS REACTIVE TO PAIN BY RECTAL PALPATION/ MANIPULATION. That offers the ability to exactly locate the offender.
Wish you love and relief !

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@friederike19

There are several pudendal nerve strands IN THE SAME AREA ! THAT IS WHY YOU NEED HIGHLY TRAINED/ EXPERIENCED ANAESTHETIST TO PERFORM THIS PROCEDURE. THEY CAN ASSES WHICH ONE iS REACTIVE TO PAIN BY RECTAL PALPATION/ MANIPULATION. That offers the ability to exactly locate the offender.
Wish you love and relief !

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Where do you find anesthesiologists who do this type of chronic pain stuff..I have been diagnosed with pudendal nueralgia…not fun!!! Have tried injections to 3 branches of pudendal nerve, trigger point injections, pelvic floor therapist was too agressive and opened this can of worms. I am now seeking out a urogynecologist who can perform pudendal nerve ablatement…not an easy task…I have been in relentless horrid pain…this started 5 years ago after being over dilated in a hemorrhoid banding. Pain upon defacation. Well it ended up, 10 colorectal surgeons later to be internal rectal descent. Had this repaired with good job on rectopexy…with surgeon telling me he could not stop the nerve pain upon defacation. I was to go see a Pelvic floor Therapist, as the pain was still there. I found I thought to be a very good one…1st 2 visits doin good…3rd visit African beehive started. Right now I'm doing tens, unit…and some stretches. I've had mri sacrum, shows connection to my foot nueropathy but not this. I think I found a urogyno in West LA, Dr. Michael Tahery…head of woman's clinic at Cedar Sinai …asking about pudendal nerve ablatement…his staff said he performed this …being a holiday, I must wait till Wednesday to know…but it is a long journey to get there. I feel so in the dark…the urogyno who did injections is never available or ever writes I have no medical professional who gets PN…last nite I tried an old tens item I used in the past…tens anal probe. It actually feels better….so going to do sensible things I know help, as no doctor does. I do not get why doctors are not taught about the pudential nerve…most not even knowing what it is. I must be my own advocate…I had a hard time getting on here.
If you know or have advice or questions…please write…I'm in Southern California …thank you!!!
Hope ur having a nice holiday weekend!!!
Cheri….
..

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@olivedog

Where do you find anesthesiologists who do this type of chronic pain stuff..I have been diagnosed with pudendal nueralgia…not fun!!! Have tried injections to 3 branches of pudendal nerve, trigger point injections, pelvic floor therapist was too agressive and opened this can of worms. I am now seeking out a urogynecologist who can perform pudendal nerve ablatement…not an easy task…I have been in relentless horrid pain…this started 5 years ago after being over dilated in a hemorrhoid banding. Pain upon defacation. Well it ended up, 10 colorectal surgeons later to be internal rectal descent. Had this repaired with good job on rectopexy…with surgeon telling me he could not stop the nerve pain upon defacation. I was to go see a Pelvic floor Therapist, as the pain was still there. I found I thought to be a very good one…1st 2 visits doin good…3rd visit African beehive started. Right now I'm doing tens, unit…and some stretches. I've had mri sacrum, shows connection to my foot nueropathy but not this. I think I found a urogyno in West LA, Dr. Michael Tahery…head of woman's clinic at Cedar Sinai …asking about pudendal nerve ablatement…his staff said he performed this …being a holiday, I must wait till Wednesday to know…but it is a long journey to get there. I feel so in the dark…the urogyno who did injections is never available or ever writes I have no medical professional who gets PN…last nite I tried an old tens item I used in the past…tens anal probe. It actually feels better….so going to do sensible things I know help, as no doctor does. I do not get why doctors are not taught about the pudential nerve…most not even knowing what it is. I must be my own advocate…I had a hard time getting on here.
If you know or have advice or questions…please write…I'm in Southern California …thank you!!!
Hope ur having a nice holiday weekend!!!
Cheri….
..

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@olivedog I cannot offer any REAL help for this unimaginable pain you must be going through. I can't believe something like this can happen and a surgeon still being allowed to operate. My deep prayers and thoughts go out to you, Cheri. At least know you have my support and I am here for you if you need it.

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@bustrbrwn22

@olivedog I cannot offer any REAL help for this unimaginable pain you must be going through. I can't believe something like this can happen and a surgeon still being allowed to operate. My deep prayers and thoughts go out to you, Cheri. At least know you have my support and I am here for you if you need it.

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Thank you and God Bless you…PN is horrid…I hope this new Doctor Tahery is not like the rest…this is true real bonified hideous. I was warned about the doctors here,by all….most people go to Orange County, or San Diego….but dumb me trusted them…Riverside County…Temecula,CA. originally from Newport Beach. If you ever hear anything at all…please write.thank you so much for caring….this is real hard, I have a friend in Sacramento who is the same or worse. U would not believe what she has been put through. Thanks, Cheri

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I have this really bad now after 5 years…have done lots…it is worse …are you any better and what did you do?????

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I had this for 14-1/2 years and sat on a donut. What eventually took it away was anti-seizure medicine that I took for an unrelated condition. Ask your doctor. It worked really quickly too. My PT mentioned that she heard of it working too. Good luck with this monster condition.!

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