Pudendal Nerve Entrapment/Neuropathy/Damage

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.

@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

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

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.

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.

II had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, swelling and pain. I never had pelvic pain. I woke up the day after the surgery with numbness and tingling in my buttocks and vulva area. The surgeon said it would pass. I had to wear compression shorts for 30days and was in agony. My insides were pressing against my outsides, which were being compressed by the compression shorts.
Ifinally demanded to be seen by the surgeon 37 days after surgery and 1 week after being out of compression shorts. Doing my own research I said I thought I had pudendal neuropathy – I am textbook case for all of the symptoms of pain, tingling, burning and numbness and pressure. I feel lucky not to have any incontinence issues. My surgeon said since it is inconsistent it is not damaged and will improve, that I just need to be patient.

Meanwhile I am trying to go to work, care for my family and have a normal life. Some days are better than others. Today is a bad day, and it isn’t an illness you really want to publicize as it is such a private area of the body. Additionally I have suffered from fibromyalgia for,the last 10years. I don’t take any prescriptions, and try to be sugar and gluten free to reduce inflammation. I am not comfortable that the surgeon knows anything about this condition.

Does anyone have any advice for me? I live in Cincinnati. I don’t know what type of doctor to see- the surgeon has never in 20years had this happen. I would love to know what type of doctors other are seeking for help, and what is helping. I would be very reluctant to have another surgery since I am significantly worse off than when I had the first procedure.

Thank you

@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.