Pudendal Nerve Entrapment/Neuropathy/Damage

@bkruppa Nerve enteapment is notoriously hard to image. I never had imaging or "tests" to diagnose my problem. Doctors simply ruled out everything else and also used ultrasound guided peripheral nerve blocks to diagnose. This is a common method of diagnosing the problem of entrapped nerves. Everytime I got peripheral nerve blocks of the affected nerves (which I had done many times over 3 years of working towards a resolution to my pain, by many different and well known specialists), the pain went away 100% until the nerve block wore off. Once the nerve block wore off, the pain returned in full force. No other modality or conservative treatment ever removed my pain entirely like a nerve block.

There are some newer imaging techniques such as MRN (MR Neurography) that are not always covered by insurance and still also aren't entirely accurate - i.e. the imaging could show nothing and your wife could still have a nerve entrapment. Thus, I never did this type of imaging.

I do think you should pursue an EMG/NCS. Even if it is negative, you'll want to show a doctor you had the tests done, and please know the doctor you ultimately work with on the nerve entrapment issue may want to repeat some or many tests again at their own institution. Doctors tend to like tests from their own institution. However, to gather evidence and build your own case, go ahead and get the NCS/EMG now. Those who understand nerves know they aren't always accurate. Just do it to get in the door with a doctor in this field.

A diagnostic ultrasound guided nerve block is another test you need to have done. Interventional pain management doctors, who are often anesthesiologists, perform this. They may also want to do other tests prior to a nerve block, and just let them. Please, as you read this response, remember it took me 3-4 years to get as far as finding the right doctor to operate on my entrapment and for me (and my doctors) to believe I really did rule out all other possible conditions.

I'd find a good interventional pain management doctor at a large teaching hospital. Begin to work with them and know the first one may not be the one you need. Try to build rapport with one and go through all their tests. They will eventually get you to the right answer and right tests, but this all takes time.

You can also google search for nerve entrapment programs or mentions on academic hospital websites. The reason I suggest a larger practice is they are worth their weight in gold if you find a good doctor. I chose my surgeon because if the operation didnt help my pain, he would still help me, as would my pain doc, vs. leaving me high and dry after a failed surgery. It's good to have a team to support you and your wife through this.

Happy to help and answer any more questions. I'm here to help others not suffer for years like I have. There are great docs to help you, but know it will take time and also please get multiple opinions and rule out all else before surgery. I've tried all conservative measures and had so many tests. If helpful I can list them all out to you.

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.

2 weeks on it. Never a surgeon; just pelvic therapy. I will call you tonight, ok?

Yed

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 for your insights. I’m in a similar place, trying to find the right Dr. I’m near LA but don’t know where to start. Do you mind sharing the name of your dr. Thank you, wendy hahn

I have been suffering with possible pudendal neuralgia - pudendal nerve entrapment along with sciatic nerve entrapment for over 1 year. It started with an injury to my low back in Jan 2023, I have DDD and arthritis in my SI joints. My symptoms have worsened even though I have been to the pain clinic for multiple nerve block injections and on Pregabalin & Baclofen. The pain worsens during the day, sometimes incredibly painful, having already had my prescribed dose of meds. Sometimes I have bladder spasms too. I am wondering if seeing a neurologist and having a CT or U/S guided nerve block is best. Any input is greatly appreciated. With sincere gratitude.

Welcome @raredisease24, I'm sorry to hear you haven't found any relief for your pain following the injury to your lower back. While you wait for others in this discussion to respond, there are many members discussing pain from lower back injuries. Here's a link to the discussions and comments from other members that might be helpful to scan through - https://connect.mayoclinic.org/search/discussions/?search=pain%20from%20lower%20back%20injury.

Have you seen a spine specialist?