Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

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.

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.

@ahayes

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.

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I also have nerve entrapment from lower back to growth n and use ice bags that help I have Gabapentin for it but that doesn't work 24/7 we are all pain warriors here

I also got a nerve stimulator in my leg. It's a medtronic scs lead and IPG in my leg, off label FDA. Forgot to mention that in my original comment.

@ahayes

I also got a nerve stimulator in my leg. It's a medtronic scs lead and IPG in my leg, off label FDA. Forgot to mention that in my original comment.

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@ahayes, how affective is the nerve stimulator for you? Members on Connect have expressed a wide array of results, but some have found stimulators to be very helpful.

@JustinMcClanahan

@ahayes, how affective is the nerve stimulator for you? Members on Connect have expressed a wide array of results, but some have found stimulators to be very helpful.

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@JustinMcClanahan hi justin! Have any connect members had an off label peripheral stimulator (i.e. used an SCS stimulator in another area of the body)? Previous trials worked well with another system that's wasnt inserted in an open approach and wasnt stable/durable enough for me due to limited approaches to the area I needed stim in. I'm still waiting to see how this one works for me, as I am healing from decompression of all nerves in my lower leg. Had the medtronic put in during same case. Thus, nerves are pretty sensitive right now and cannot run stimulator yet. This was all done 4 weeks ago.

@ahayes am interested in your thoughts on it also

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.

With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the only permanent relief is surgical release/decompression of the nerve.

I had a terrible tibial nerve entrapment that caused me so much pain I wanted to die. When I had surgery to release that nerve in October, it felt better quickly. Now, I need to go back to the surgeon and have more nerves decompressed to fix my other "pain spots".

I got this problem from a surgery, too. It took 4 years, failures, trying every conservative option possible, in order to find the right doctors to fix my problem. Doctors who did believe me. And to get to a point where I believed what I was told, that surgery would help. To rule out all other options.

There are doctors who specialize in peripheral nerve release surgery and others who dont sub specialize but at very good. I have seen several sub specialists but ultimately went with a plastic reconstructive surgeon closer to me for many reasons.

Very interesting. Question to you is how did you determine where the nerve was entrapped? We had a couple of MRIs to try and find the problem point but they came up with nothing as the details just weren't there. Then I asked the doctors at Mayo to do nerve conduction tests to find the entrapped area but they said these tests won't provide reliable results so they ended up not doing it. I wished they would have as any data is better then no data. Also doctors seem to delve into other never issues but not the pudendal as it is multi function and complex so they stay from it. Any help you can provide will be appreciated.

@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.

Liked by lasirvent

I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary procedure in 2004; it was confirmed by specialists in Houston Texas in 2005. I agree, though, that pelvic floor disorders are notoriously complex; PNE did not explain all my symptoms, just most of them. I got PN bilateral nerve release surgery in mid-2005, with initial improvements, but within 6 months was doing poorly again. Then I changed my entire work lifestyle and did substantially better over time, eventually becoming nearly completely pain-free by 2010. I relapsed in 2012, but refused to change my life again until late 2013 when a specialist (Dr Weiss, San Francisco, highly recommended if he still practices) told me to take 3 months off work and stop sitting altogether during that time or I'd become a bedridden invalid. Shocked, but obedient, I did that. I returned to work thereafter 20 hours/week. Now in 2018 I can work 36 hours/week, sit up to 2 hours depending upon the surface and what I am doing, drive myself to store, and I'm down to just taking 30 mg Cymbalta a day (I was taking 3200 mg of Neurontin/day back in 2004!). Life is SO much better. Strongly suggest you look up pudendalhope …excellent resources for PNE sufferer.

Liked by lasirvent

@bkruppa

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.

Jump to this post

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).

Good information. Regarding the nerve block process to find the troubling muscle my wife has had three attempts at a nerve block. One in the caudal area and two in the buttocks which was driven by imaging techniques. To the surprise of the doctors all three has zero affect on her pain. We are now at another doctor who wants to inject a steroid into the lower spine where the pudendal nerve roots are. He indicated that there may be inflammation at this point that is causing the nerve pain. My response was "Well then lets find the cause of inflammation rather than trying to treat the symptom." The doctor said that due to poor posture (favoring one side when she had shingles pain) that the spine may be compressing that area and causing the inflammation. We are looking into an inversion table to help straighten out this area IF it indeed is the cause.

Interesting you should mention the hip area. My wife's pain is more towards the ends of the pudendal nerve. However, she responds well to massaging up near the hip. While it does not relieve the pain it makes it feel somewhat better. I will look more into this area as well as the sacrotuberous muscle area as possible entrapment areas. I am a believer in stretching as I was ready for both hip and knee replacements when the surgeon said to try PT first. It was amazing the relief I got and almost immediately. Now I am pain free in both areas. Also I can have serious lower back pain episodes if I don't keep these areas stretched properly. The pain is so intense I said I would rather pass two kidney stones then go through a lower back pain episode. Stretching was the key to resolving this problem.

@bkruppa

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.

Jump to this post

I am curious to know if you have any further successes? I had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, selling 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 agains my outside which was being compressed by the compression shorts. I finally 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.

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

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

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