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Pudendal Nerve Entrapment/Neuropathy/Damage
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.
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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.
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
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
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1 ReactionI 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.
@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.
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.
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
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.
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??
@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.
@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.
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1 Reaction@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.