Pudendal Nerve Entrapment/Neuropathy/Damage

I don't remember the dosage. I took it off-label for a daily persistent headache and it just happened to work on my pudenal nerve. Makes sense though since it is anti-seizure medicine and it is a spasm down there. My pelvic therapist said she had heard of it before.

Thank you. I am not sure if I'm having spasm. PT says pain from entrapment of nerve from tight muscles in pelvic floor. Pain causes muscles to constrict. Using nerve block to try and shut off pain signal from brain to nerve and back. Said when chronic, takes longer to undo. I will mention this med as possible help? Relax the area. Thanks

Hi, your not alone out there.
I have been dealing with this since Novemeber 2023. Have been to dozens of doctors... many not having a clue about it or not wanting to bother to help . Believe me, I have had doctors ( neurosurgeons) who have said, "I have no idea what that is". Theses are nerves, that every neurosurgeon should know where they are! I have had nerve blocks internally ( vaginally and extremly painful) and externally that help with the pain for a few weeks.

Found a new MRI machine that does film for the nerves only - MR Neurography- very hard to find other than at the large teaching hospitals- but your doctors don't tell you about this! It would help to know where exactly the nerve is ( there are soo many) so that targeting for a surgery would be easy. I have been doing research on doctors that do "decompression surgery of the nerve" which I hear is very dangerours.- all over the United States. Extremly expensive if they don't take your insurance ( upward of $100,000)

I'm at wits end.... ALSO considering NALU - periperal nerve stimulation -- don't know if I really like this option, but considering it, to just get rid of the pain until I can find a CURE, not a Bandaid. If anyone else has something, somwhere please let me know!! Thanks

I have nerve entrapment but not in that area, I have multiple nerve entrapments in my leg and recently had surgery to decompress the entrapments and insert a peripheral nerve stimulator in the event I still have pain after I heal.

I wish you luck and you can message me anytime for support. All nerve enteapments suck and there isn't a lot of awareness of just how painful and functionally limiting they can be for day to day activities. Stay strong.

Hello,
I have nerve damage from the shingles and have been living in agony since 2018. As much as it's going to hurt, I am going to see yet another doctor whose speciality is the nerves and pain. I'm in California and the doctor is in Nebraska. I'm only getting blocks to see if I'm a candidate for a neurectomy. I know I read about other surgeries he does and I believe they were writing about what you have. If you can give me a name of what you have I can get some literature while I am there. This is the last thing I can try. I had a spinal chord stimulator, unfortunately it did not work for me. Thank you.

I’m curious about the thought of a neurectomy. My concern is that the pudendal nerve includes the rectal branch and bladder is involved. So, if they burn the nerve, what about the possibility of incontinence?

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.

Thank you so much for replying to me ! I feel so alone with my pain ,I'm on lyrics, and oxycotin and it is not helping much! My doctor wants to do surgery for Chianti, but I dnt trust him ! He says it want help my nerve damage, only my headaches. I need my nerve damage fixed! I'm in hell and having a hard time taking care of my husband and grandson, if anyone has some advice please help

None of these post mentioned a successful treatment I had that has kept me pain-free for six years. They just use radio frequency ablation and aim it at the pudendal nerve.