Pudendal Nerve Entrapment/Neuropathy/Damage

Yes, I recall the aloneness but this is what worked for me after 14 years of sitting on a donut......anti-seizure medicine that I was taking off-label for another medical condition. Please mention this to your doctor. I didn't take it long and it worked!

For pudendal Pain I use amitriptyline with pregabalin (max allowable dose) and when needed clobetasol ointment (sparingly). Finally found relief with this combination of medication after suffering from pudendal pain for many years as a result of severe burn and destruction of tissue from a prescribed medical misdiagnosis and a genetic skin disease called lichen sclerosis. Good luck. Hope this helps.

which seizure medication? I'm glad it worked for 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.

Possibly different stretches and exercises could help? Some of the nerve entrapment could be due to myofascial tightness in the inner musculature of the hip that could cause nerve irritation / compression? These could include various exercises that release the hip flexors, strengthen (and move) the core muscles, etc. I have had a complex pain syndrome that partially responds to stretching and exercise (involving tight quadratus lumborum, tight psoas / all the way into diaphragm, etc.) as well as tight glutes, hamstrings, IT band, etc., all due to something compressing spinal nerves / other nerves. Yes, I believe some symptoms map near pudendal nerve functions, too, for me. One component of my stretching is also very deep breathing which helped relax the psoas / diaphragm issues. I've been working with a certified massage therapist who uses active release and ultrasound stimulation all over (and prior with a chiropractor that used electrical stimulation / ultrasound on the glutes specifically to loosen them up). These are unusual treatements and need to be sought out - but they did help me and a lot of that resolved and didn't come back - at least not to all the peripheral areas.

That maybe isn't what you want to hear - it would be great to have a simple surgical solution - but quite possibly tight muscles could cause / exacerbate this problem as I believe they are doing for me (See the book "a headache in the Pelvis" by Wise and Anderson who argue a lot of the pain syndromes that map to the pelvic area are caused by myofascial pain. In these cases, symptoms are very much eased by the stretching and exercise. I use a TRX suspension system for core exercises, an aeropilates 700 Pilates system for some pilates exercises (but floor work is good, too), common stretches (especially those for piriformis syndrome and to release QL, psoas, hip flexors and lower back and hamstrings). I use an inversion table (I do have lower lumbar DDD with some spinal stenosis, among other things). I sit in a recliner when possible or use cushions as I still have some sitting pain, too.

Good luck. Please disregard if you've tried this or you feel it's not relevant (and, of course, I don't want to offer medical advice here as I'm not a medical doctor).

I'm dealing with nerve damage from the waist down. I am a very open person even with the embarrassing stuff. I hate it though of course. Oh I'm new to this whole group.

@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.

Hello. Which Doctor did you use?