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.

@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

Jump to this post

My wife has similar types of pain. Some days it is not too bad while others it seems nothing helps. She uses CBD oil and it helps take the edge off of the pain. It is not as effective as her pain meds but again, with the amount of pain she has anything helps. CBD is NOT illegal. It is sold in many places here in South Carolina and in many states across the country. It is expensive but I suspect as more and more people get into the business pricing will come down.

She has had several nerve blocks tried in various areas of the pudendal nerve but none gave her one ounce of relief. Even the doctors were surprised at the results. We are just starting to use the stimulator so we will see how that turns out. Contrary to what you said I haven't had anyone including doctors say that you can do harm with a TENS stimulator.

We are starting to look into possible sources of pain originating from the spinal chord. Given where the pain is my wife tends to favor sitting on one side which may have caused a deforming of the spinal column and maybe putting pressure on the roots of the pudendal nerve. Right now anything is on the table. However, from all that I've researched it appears that the massaging techniques seem to help or cure this problem the most. Good luck and don't give up as hopefully you will find a cure some day. We are still looking for a cure after 8 years now.

REPLY
@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

Jump to this post

I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

REPLY
@oregonbrad

I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

Jump to this post

Wow! You certainly have a large family! That can also be a stressor. And I certainly don't mean that in a bad way…just lots of things you'd love to do with them. And how difficult it can be when you're in pain. I have that with my grandchildren. I want to be able to spend more time with them, but the pain can be prohibitive. You have to find that balance which can be hard. A supportive spouse can make a world of difference. I've been fortunate and blessed with a husband who tries to help out when he can.
I was diagnosed last May by two neurologists with a very rare autoimmune disease called CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. Nobody knows what causes it (same with Fibromyalgia). But my immune system has decided to attack me by eating away at the fatty coverings (myelin) on the nerves in my feet, legs, arm and hands so far. It causes the messages from the brain to become scrambled as it passes down the nerves to those body parts and back to the brain. It's messed up my balance and gait. I started tripping and falling last fall for no apparent reason. After EMG and electrical shocks, blood tests and several doctors, that's the diagnosis. Chronic, no cure, just trying to manage the symptoms with Gamma globulin infusions every 3 weeks. I'm just following the plan…
Will you be seeing any other doctors in the future that might afford you some other ideas for treatment/relief? I wonder if CBD oil might even be an option for you? Might be.worth checking in to. It's not easy living with pain 24/7. I admire your strength and tenacity. God bless you and your family… Sharon

REPLY

I understand your pain because I suffer from pudendal neuralgia as well. It's from Tarlov cysts that I have in my sacral area. I'm currently waiting for a surgery date for those and am hoping the neuralgia will subside with minimal nerve damage.

REPLY
@bkruppa

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ……………I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

Jump to this post

@bkruppa I am not sure where you are located at, but I know of a physical therapy facility in Tustin Ca that has had great success of relieving PNE through physical therapy, and there is a neurosurgeon at barrow neurological institute in Phoenix AZ that is very well known in this field.

REPLY
@jordanabrams30

@bkruppa I am not sure where you are located at, but I know of a physical therapy facility in Tustin Ca that has had great success of relieving PNE through physical therapy, and there is a neurosurgeon at barrow neurological institute in Phoenix AZ that is very well known in this field.

Jump to this post

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

REPLY
@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

Jump to this post

It could be a matter of positioning. Also as an FYI there is a doctor in GA that specializes in guided ablation therapy but does it via freeze instead of burn with good results

REPLY
@jordanabrams30

It could be a matter of positioning. Also as an FYI there is a doctor in GA that specializes in guided ablation therapy but does it via freeze instead of burn with good results

Jump to this post

I've read good and bad about ablation that was done surgically. However, the newer techniques using cryo seem to have good success rates. Problem is finding a doctor who believes in this as most doctors that I mention this to seem to refer to the cryo techniques that were used decades ago which had little success. However, in either case one is always concerned about techniques that could affect the normal function of the nerve or nerve endings as if something went wrong the pain would get worse. So we are very cautious in heading in these directions.

REPLY
@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

Jump to this post

Hi Sharon,

May I ask if your doctors have told you why they can't offer you surgery to release the impingement? Have they told you what is pinching the nerve??

REPLY
@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

Jump to this post

@bkruppa this is typical of peripheral nerve enteapment pain or peripheral nerve compression, imo. I have the same thing with my leg, i feel worse after using my leg too much and best if I rest. I'm going thru surgeries now to get entrapments fixed.

REPLY
@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

Jump to this post

@bkruppa Do you think it might be what she is doing during the day that increases pain? Does she sit most of the day and is this when she has more pain? Is there less pain laying down when her legs are extended? What I think about is the psoas muscle. It attaches on the inside on the ilium or the "hip bones" and connects to the spine, and sitting shortens this muscle. Because it affects the pelvis and the alignment of the bones that form the pelvis, shortening might increase her pain. That would also shorten her strides when walking. I have to stretch when mine get shorter with lunges or even standing against a door frame and pressing a small ball inside the ilium to release the muscle. These could be questions to ask of her therapist. Perhaps keeping notes on what position she is in when pain increases would be helpful, and what positions are less painful.

REPLY

@bkruppa, I have been through now 20 plus years of this. I havent read all of the posts, but I dont see anyone suggesting what has worked best in my case; which is a combination of cymbalta and lyrica. I HATE to be on these drugs, especially cymbalta. But the synergy of these two drugs together has been the ONLY thing that calmed the nerve pain.
I would be very interested to see if anyone else has tried this. It has worked successfully for diabetic nerve pain as well — both are peripheral nerves.

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