Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain group.

@greenacres

Thank you for that info Mikayla. I'm very sorry that these injections did not work for you and I hope that you will find relief some other way. I missed part of these posts and wasn't aware that this was the pelvic area. It just adds insult to injury to have that in such a sensitive area.

Jump to this post

I have mentioned to others, greenacres, that anti-seizure med was the only thing that worked for me. It was Topamax and it worked quickly.

REPLY
@mikaylar

I have mentioned to others, greenacres, that anti-seizure med was the only thing that worked for me. It was Topamax and it worked quickly.

Jump to this post

@mikaylar Thank you for letting me know that. It's always wonderful to read about a good outcome.

REPLY

I have an appointment with UCSD's Woman's Health, Dr. Charles Nagar, Oct. 19th, seeing a Nuerosurgeon b4 this with fresh Lumbar Sacrum Mri. Dr,. Nagar, whom I have not seen, but did talk to nurse, repairs the pelvic floor, knows of all ligaments, and about entrapment of the pudendal nerve. He works with this directly. I have tried all the shots, made me worse and extremely painful. The pelvic floor therapist brought this all on 2 months ago, by being too aggressive, and admits to it. This is a very difficult thing too deal with as no ER can help you, doctors do not get it, only urogynecologists
and we do not have one where I live. I have been diagnosed with Pudendal nerve entrapment or PNE. I believe I finally located the proper place to go. The pain after defacation is off the charts, now affecting urine flow and sitting. I believe this is more common than people know, and doctors need lots more study in medical school…why should only urogynecologists get this. This create so much stress having the pain, and your regular pcp has no clue…pretty crazy.
This is very real, and extremely painful, very underestimated and over looked. I think I found a very good Doctor finally, I'm hoping…been in practice for over 30 years…now to get there in this pain. The Nuerosurgeon I see Tuesday will obviously be made fully aware of this, to set my pcp straight, along with her never requesting the records of diagnosis.
I have to be my own advocate, as this really needs a lot more attention. You should read the Pudendal Nueralgia Forum,
Many suffer from this…pills again seem to be doctors answers…sorry but I want the root cause, not to be put on some ssri drug, only to cause more problems. Let us hope I am finally after 5 years going to get an answer…it has been there since being over dilated in a hemorrhoid banding 5 years ago. It took me 10 colorectal surgeons to listen…I wasxin 3rdcdegree rectal descent with this nerve pain after defacation. It was after having my rectum repaired, the colorectal
surgeon told me c he could repair my rectum, but the pain would still be there. I needed pelvic floor therapy after…well I did what was told…he had no one to refer to, I found the one…she had lots of knowledge…but as I started this …she aggravated the problem leading me to where I am now. I surely pray Dr. Nagar can give me help. This has been a long journey that is not over yet. Again much more important medical study needs to be done in this area…ugh!!!! To any fellow sufferers reading this, good luck, I know this is not easy.

REPLY
@kenyalama

I am having trigger point injections with sedation in a few weeks. It’s Botox to relax the pelvic floor
Not sure it will help but I want to try
Has anyone tried Botox trigger point injections?
Not sure why no doctor offers me the pudendal nerve block
If this does not help I will ask for the block
I don’t know anyone helped by gabapentin and it caused me amnesia ( horrible!! )
Don’t take it!
Just yesterday I screamed twice when I felt the shooting pain you know where
Had it for twenty years
Added to trigeminal neuralgia and rheumatoid arthritis I get the work ups haha
I have pain pump for TN but does not help the pelvis and Humira and methotrexate for RA
I still survive
Meditation WORKS!

Jump to this post

Marjorie, did you rule out ACNES? Sounds like may be a possibility. There is a doctor (Gillespie) in Phoenix who does robotic laparoscopic surgery to cut the nerves that cause the pain.

REPLY
@ahayes

With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the only permanent relief is surgical release/decompression of the nerve.

I had a terrible tibial nerve entrapment that caused me so much pain I wanted to die. When I had surgery to release that nerve in October, it felt better quickly. Now, I need to go back to the surgeon and have more nerves decompressed to fix my other "pain spots".

I got this problem from a surgery, too. It took 4 years, failures, trying every conservative option possible, in order to find the right doctors to fix my problem. Doctors who did believe me. And to get to a point where I believed what I was told, that surgery would help. To rule out all other options.

There are doctors who specialize in peripheral nerve release surgery and others who dont sub specialize but at very good. I have seen several sub specialists but ultimately went with a plastic reconstructive surgeon closer to me for many reasons.

Jump to this post

I realize this is an old thread but I too suffer from nerve entrapments all over my lower body. I too have had decompression surgeries and am desperate to connect with others who have this condition. @ahayes are you still around?

REPLY
@olivedog

I have an appointment with UCSD's Woman's Health, Dr. Charles Nagar, Oct. 19th, seeing a Nuerosurgeon b4 this with fresh Lumbar Sacrum Mri. Dr,. Nagar, whom I have not seen, but did talk to nurse, repairs the pelvic floor, knows of all ligaments, and about entrapment of the pudendal nerve. He works with this directly. I have tried all the shots, made me worse and extremely painful. The pelvic floor therapist brought this all on 2 months ago, by being too aggressive, and admits to it. This is a very difficult thing too deal with as no ER can help you, doctors do not get it, only urogynecologists
and we do not have one where I live. I have been diagnosed with Pudendal nerve entrapment or PNE. I believe I finally located the proper place to go. The pain after defacation is off the charts, now affecting urine flow and sitting. I believe this is more common than people know, and doctors need lots more study in medical school…why should only urogynecologists get this. This create so much stress having the pain, and your regular pcp has no clue…pretty crazy.
This is very real, and extremely painful, very underestimated and over looked. I think I found a very good Doctor finally, I'm hoping…been in practice for over 30 years…now to get there in this pain. The Nuerosurgeon I see Tuesday will obviously be made fully aware of this, to set my pcp straight, along with her never requesting the records of diagnosis.
I have to be my own advocate, as this really needs a lot more attention. You should read the Pudendal Nueralgia Forum,
Many suffer from this…pills again seem to be doctors answers…sorry but I want the root cause, not to be put on some ssri drug, only to cause more problems. Let us hope I am finally after 5 years going to get an answer…it has been there since being over dilated in a hemorrhoid banding 5 years ago. It took me 10 colorectal surgeons to listen…I wasxin 3rdcdegree rectal descent with this nerve pain after defacation. It was after having my rectum repaired, the colorectal
surgeon told me c he could repair my rectum, but the pain would still be there. I needed pelvic floor therapy after…well I did what was told…he had no one to refer to, I found the one…she had lots of knowledge…but as I started this …she aggravated the problem leading me to where I am now. I surely pray Dr. Nagar can give me help. This has been a long journey that is not over yet. Again much more important medical study needs to be done in this area…ugh!!!! To any fellow sufferers reading this, good luck, I know this is not easy.

Jump to this post

After 14-1/2 years of suffering with this monster and trying everything, I took an anti-seizure medicine Topamax for an unrelated problem and BINGO, it worked. Please consider this before you do any surgical procedures. I treated at the University of PA in Phila and they couldn't help. This worked and quickly.

REPLY
@mikaylar

After 14-1/2 years of suffering with this monster and trying everything, I took an anti-seizure medicine Topamax for an unrelated problem and BINGO, it worked. Please consider this before you do any surgical procedures. I treated at the University of PA in Phila and they couldn't help. This worked and quickly.

Jump to this post

Hi, I'm afraid to start any ssri drug, what drug is this, and what reaction do u have from it. I have a Nuerosurgeon televisit, relating to my sacrum and numb feet on Tuesday…could not come at a better time…as,my pcp does not get this…and her lax office records keeper never got the diagnosis.i have now got this in action. I will discuss this large can of worms with the Nuerosurgeon as he will get this…I'm gonna let him know to let my pcp know I need televisits which they refuse, to even ask for new meds, they say those are for sick people!!!! Well I consider myself pretty sick right now…never in my life have I needed pain pills!!! I am a mess . Our humidity
Has been real high, and c I react very bad to this. This is all new rpto me too, I never in 5 years of pain after defacation had it or anything like this until that pft…got too aggressive 2 months ago, and it is relentless. I'm real afraid, I do not want to take pills but right now…only thing that helps.
I was told not to write, by her, yet all her staff told me to. I am definitely going to look for a new pcp,
But right now a bit difficult. This some hard yucky horrid stuff!!! Thank you so very much for writing back. God bless you!!!! Thank God I have a Nuerosurgeon televisit on Tuesday, he is suppose to be kind and compassionate…I'm sure I can get him to set this dumbell doctor straightened out!!!!
Again thank u …..so much appreciated…this is not rare…look up the Pudendal Nueralgia Support
Forum…so many, and why on God's green earth are urogynecologists the only doctors who know of pudendal nerve…we have no urogynecologists in my city….have to drive 2 hours!!!! The ER docs have no clue,,,till they see My Chart records…they think I'm crazy at first!!!
Have a beautiful day, if you can!!!!! Much love…….

REPLY
@olivedog

Hi, I'm afraid to start any ssri drug, what drug is this, and what reaction do u have from it. I have a Nuerosurgeon televisit, relating to my sacrum and numb feet on Tuesday…could not come at a better time…as,my pcp does not get this…and her lax office records keeper never got the diagnosis.i have now got this in action. I will discuss this large can of worms with the Nuerosurgeon as he will get this…I'm gonna let him know to let my pcp know I need televisits which they refuse, to even ask for new meds, they say those are for sick people!!!! Well I consider myself pretty sick right now…never in my life have I needed pain pills!!! I am a mess . Our humidity
Has been real high, and c I react very bad to this. This is all new rpto me too, I never in 5 years of pain after defacation had it or anything like this until that pft…got too aggressive 2 months ago, and it is relentless. I'm real afraid, I do not want to take pills but right now…only thing that helps.
I was told not to write, by her, yet all her staff told me to. I am definitely going to look for a new pcp,
But right now a bit difficult. This some hard yucky horrid stuff!!! Thank you so very much for writing back. God bless you!!!! Thank God I have a Nuerosurgeon televisit on Tuesday, he is suppose to be kind and compassionate…I'm sure I can get him to set this dumbell doctor straightened out!!!!
Again thank u …..so much appreciated…this is not rare…look up the Pudendal Nueralgia Support
Forum…so many, and why on God's green earth are urogynecologists the only doctors who know of pudendal nerve…we have no urogynecologists in my city….have to drive 2 hours!!!! The ER docs have no clue,,,till they see My Chart records…they think I'm crazy at first!!!
Have a beautiful day, if you can!!!!! Much love…….

Jump to this post

I will research Topamax, again thank u!!!!

REPLY
@olivedog

I will research Topamax, again thank u!!!!

Jump to this post

I did not take Topamax long 'cause it is unpleasant. I took it off-label for an unrelated issue and it cured my Pudenal issue. The neurologist would be the one to ask. Tell them you just want to try it for a bit. After I got relief, my Physical Therapist mentioned that she had read that this helps. What have you got to lose except a week or 2 of feeling a bit off from anti-seizure med? I was 14-1/2 years of treating with everything imaginable. Give it a shot! Makes sense, the nerves are in a spasm.

REPLY
@mikaylar

I did not take Topamax long 'cause it is unpleasant. I took it off-label for an unrelated issue and it cured my Pudenal issue. The neurologist would be the one to ask. Tell them you just want to try it for a bit. After I got relief, my Physical Therapist mentioned that she had read that this helps. What have you got to lose except a week or 2 of feeling a bit off from anti-seizure med? I was 14-1/2 years of treating with everything imaginable. Give it a shot! Makes sense, the nerves are in a spasm.

Jump to this post

I will ask the Nuerosurgeon on Tuesday. You were only on this for a couple of weeks…I will check with him and see…my pcp has no clue, nor does anybody in the ER, or my immediate area. I must drive 2 hours away. …that urogyno, has never given me anything. The humidity here was 98 percent at 3 am!!! My feet react to high humidity…this is new as stated by the pft. Only 2 months like this.
The norco, wears off after 4 hours, sometimes longer…during this humidity so bad, been using
Ibuprophen with it for inflammation. I just am not use to this pain, never in my life this bad. I'm lucky I had this Nuerosurgeon appt set up. Thank you for your reply. I have never taken pain pills before, I'm sure many have much longer. I'm hoping since this is so new, Dr. Nagar I see at UCSD Women's Pelvic Health will know. I will bring up Topamax. Thank u for your response!!!! I'm on other
Drugs Topamax does not get along with….but things say that all the time…thank you!!!

REPLY
@sunflower1

Hi @ahayes. I know this is an old post, but thought I'd take a chance. How are you doing now? I've been told a couple branches of my tibial nerve are damaged (motor function of medial plantar and lateral plantar nerves aren't working well). Still trying to find answers/solution, and trying to find a doc who can help before it's too late to save the muscles. Interested in learning what others have experienced.

Jump to this post

Try Dr Eric Williams in Towson Maryland. I know he has helped others and tibial nerve is one of his specialties or seems

REPLY
Please sign in or register to post a reply.
  Request Appointment