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.

@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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I am so sorry! I have this and I am in pain while typing this! Praying for
you

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Thank you. I have prayed each and every day for more than 30 years for our Lord to ease or rid me of this pain.

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@rstollery

Thank you. I have prayed each and every day for more than 30 years for our Lord to ease or rid me of this pain.

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Wow! Did u ever do any pelvic floor physical therapy? That’s my next step. God bless you sweetheart this is some awful stuff!

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I don't do pelvic floor physical therapy due to my arthritis. However, I do 15-20 minutes of exercises 6 days a week in the city hot tub, and that provides me a little (very little) relief for a short time.

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@rstollery

I don't do pelvic floor physical therapy due to my arthritis. However, I do 15-20 minutes of exercises 6 days a week in the city hot tub, and that provides me a little (very little) relief for a short time.

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I have read so many things of dues and don’ts and I went to my doctor today
and meant to ask him about the exercises that we can do but there is a lot
of stuff we just cannot do I will find out what the exercises are that we
can do and I will let you know. I will call my doctor tomorrow and ask him
I meant to do that today when I was there. But I feel like I was rushed in
and out! I’m glad I have someone to talk to about it.

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What is the disease? What are the symptoms ?

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@lorid

What is the disease? What are the symptoms ?

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Hi @lorid,
I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the Mayo
Cinic that was extremely effective. I don’t believe the Mayo Clinic treats
this condition currently. Please tell me where you are located and I will
try to help you find a doctor that can help you.
Take care,
Darrell Burns

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@dmburns54

Hi @lorid,
I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the Mayo
Cinic that was extremely effective. I don’t believe the Mayo Clinic treats
this condition currently. Please tell me where you are located and I will
try to help you find a doctor that can help you.
Take care,
Darrell Burns

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I'm in Redmond, OR (near Bend, OR) and haven't been able to find a doctor locally to perform surgery

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@rstollery

I'm in Redmond, OR (near Bend, OR) and haven't been able to find a doctor locally to perform surgery

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I’m in Houston Tx I’ll ask my doctor

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@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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I have had PNE for 18 years. Your description about the two by four applies to me only in another private location. I have tried everything known to man i.e. Narcotics; Pelvic Floor Physical Therapy; a very invasive surgery on both sides (incisions are on each butt cheek) which I travelled from Kentucky to Minnesota (not Mayo but a PNE Clinic I think in Irmo Minnesota operated by Dr. Stanley Antolak who specializes in PNE but may be retired by now); a spinal cord stimulator implant which also failed and was later surgically removed; external lidocaine ointment; you name it and I have probably tried it. Here is how I got relief. At least enough relief to be able to function and a significant reduction in my pain. I have an implanted medication infusion system. It is made by Medtronic if you want to read about it. In order to get the surgery I had to wean off of all narcotic pain meds and be off for six weeks. The pump is placed in the left side of the abdomen and a tube is run to your spinal cord. It delivers a tiny amount of morphine and marcaine (all completely implanted and controlled by your doctor). The difference between this and narcotic pills is the amount is so tiny that you don’t get the systemic effects of narcotics. It continuously pumps a small amount of the drugs into your spinal cord where it blocks the pain signals going to your brain. They last about six years (battery life) and depending on your dose need to be refilled about every 75-90 days (refills are a simple procedure with a needle). I also take Gabapentin to supplement that. If it weren’t for that my pain was so bad I had considered suicide many times. I have also found that stress is a big factor. I am on my second pump (had one about ten years) and without it I don’t think I could have survived the pain and it’s delicate location. I completely understand your living in private pain. I still have pain so I don’t want to imply this is a complete fix because it isn’t but it made a big enough difference to allow me to live a mostly normal life. There are days when I have very little pain (almost none) and there are days I have pain that is worse. I discovered the relationship to stress just due to time and experience. I ended up getting a divorce after 13 years recently because the stress of staying in a volatile marriage was having a huge effect on my pain levels (another example of the stress factor). If you decide to investigate go to a large university pain management department or a reputable pain management facility. My insurance covered the surgery and the ongoing refills. The pump saved my life. If you have any questions just ask.

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@palmorejs

I have had PNE for 18 years. Your description about the two by four applies to me only in another private location. I have tried everything known to man i.e. Narcotics; Pelvic Floor Physical Therapy; a very invasive surgery on both sides (incisions are on each butt cheek) which I travelled from Kentucky to Minnesota (not Mayo but a PNE Clinic I think in Irmo Minnesota operated by Dr. Stanley Antolak who specializes in PNE but may be retired by now); a spinal cord stimulator implant which also failed and was later surgically removed; external lidocaine ointment; you name it and I have probably tried it. Here is how I got relief. At least enough relief to be able to function and a significant reduction in my pain. I have an implanted medication infusion system. It is made by Medtronic if you want to read about it. In order to get the surgery I had to wean off of all narcotic pain meds and be off for six weeks. The pump is placed in the left side of the abdomen and a tube is run to your spinal cord. It delivers a tiny amount of morphine and marcaine (all completely implanted and controlled by your doctor). The difference between this and narcotic pills is the amount is so tiny that you don’t get the systemic effects of narcotics. It continuously pumps a small amount of the drugs into your spinal cord where it blocks the pain signals going to your brain. They last about six years (battery life) and depending on your dose need to be refilled about every 75-90 days (refills are a simple procedure with a needle). I also take Gabapentin to supplement that. If it weren’t for that my pain was so bad I had considered suicide many times. I have also found that stress is a big factor. I am on my second pump (had one about ten years) and without it I don’t think I could have survived the pain and it’s delicate location. I completely understand your living in private pain. I still have pain so I don’t want to imply this is a complete fix because it isn’t but it made a big enough difference to allow me to live a mostly normal life. There are days when I have very little pain (almost none) and there are days I have pain that is worse. I discovered the relationship to stress just due to time and experience. I ended up getting a divorce after 13 years recently because the stress of staying in a volatile marriage was having a huge effect on my pain levels (another example of the stress factor). If you decide to investigate go to a large university pain management department or a reputable pain management facility. My insurance covered the surgery and the ongoing refills. The pump saved my life. If you have any questions just ask.

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Thanks for such an informative post. I will talk to my doctor about this, although it may be better to try a chronic pain specialist for their advice.

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I have lived with this pain continual for overe 10 years also. I also tried the spinal stimulator and had problems the whole two years I had it in. A neuro surgeon then did back surgery and put in a 10 inch bar due to disc deteriation in my back. I started seeing a pain specialist about 18 months ago. We have tried injections, ablations and had little success. I have now started on a pain patch that so far has relived at least 95% of my pain. I feel I can now live a fairly normal life if it continues to work as it is now. I am so thankful for my pain specialist not giving up on me.

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@betty1954

I have lived with this pain continual for overe 10 years also. I also tried the spinal stimulator and had problems the whole two years I had it in. A neuro surgeon then did back surgery and put in a 10 inch bar due to disc deteriation in my back. I started seeing a pain specialist about 18 months ago. We have tried injections, ablations and had little success. I have now started on a pain patch that so far has relived at least 95% of my pain. I feel I can now live a fairly normal life if it continues to work as it is now. I am so thankful for my pain specialist not giving up on me.

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What kind of pain patch are you using that works so good?

________________________________

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@betty1954

I have lived with this pain continual for overe 10 years also. I also tried the spinal stimulator and had problems the whole two years I had it in. A neuro surgeon then did back surgery and put in a 10 inch bar due to disc deteriation in my back. I started seeing a pain specialist about 18 months ago. We have tried injections, ablations and had little success. I have now started on a pain patch that so far has relived at least 95% of my pain. I feel I can now live a fairly normal life if it continues to work as it is now. I am so thankful for my pain specialist not giving up on me.

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What kind of pain patch And where do you put it

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Same question — I put lidocaine cream but that does nothing. Pain patch wouldn’t stay on in that area?

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