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.

My wife's pudendal nerve pain started after a bout with shingles in that area. However, doctors have concluded that her pain is not nerve damage but something else. After 8 years of seeing all kinds of doctors the only thing she is getting from the medical industry is prescriptions for pain meds. Most of what I suggest to doctors is foreign to them and personally I believe they don't believe in any of it.

From what I've researched the pelvic area and particularly the pudendal nerve is very complex and most neuro doctors won't even touch that area since like males in the same area much harm can be done if procedures are done incorrectly. A male friend of mine had a prostectomy that apparently didn't go right and he has more problems in that area that you can imagine and all due to nerve damage.

Scar tissue can entrap the pudendal nerve as well as muscle entrapments which is what I believe my wife's pain is due to. If you didn't have this pain prior to surgery you should discuss the procedure with your surgeon in detail to see if there was a possibility of damage to the pudendal nerve. Also if muscle or scar tissue is the cause then do a search on PNE (Pudendal Nerve Entrapment) to find a local facility (doesn't have to be a doctor) who specializes in these non-evasive treatments.

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@bkruppa

My wife's pudendal nerve pain started after a bout with shingles in that area. However, doctors have concluded that her pain is not nerve damage but something else. After 8 years of seeing all kinds of doctors the only thing she is getting from the medical industry is prescriptions for pain meds. Most of what I suggest to doctors is foreign to them and personally I believe they don't believe in any of it.

From what I've researched the pelvic area and particularly the pudendal nerve is very complex and most neuro doctors won't even touch that area since like males in the same area much harm can be done if procedures are done incorrectly. A male friend of mine had a prostectomy that apparently didn't go right and he has more problems in that area that you can imagine and all due to nerve damage.

Scar tissue can entrap the pudendal nerve as well as muscle entrapments which is what I believe my wife's pain is due to. If you didn't have this pain prior to surgery you should discuss the procedure with your surgeon in detail to see if there was a possibility of damage to the pudendal nerve. Also if muscle or scar tissue is the cause then do a search on PNE (Pudendal Nerve Entrapment) to find a local facility (doesn't have to be a doctor) who specializes in these non-evasive treatments.

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Thanks for the advice. This is a grim reality isn’t it? I can’t imagine doing this for 8 years- it is so painful and all encompassing! Kudos to you for helping your wife so. I have spoken with my physical therapist. She has suggested reaching out to a pelvic floor physical therapist. Have you gone down that route? If not perhaps that can bring her relief. Please keep me posted and I will do the same. I will keep you both in my prayers.
L

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Yes my wife has seen a pelvic floor therapist for a short time. If offers some relief but from what I read it can take weeks to a year or so to relieve this kind of issue. There are books on this subject from the experts who have clinics around the country. Also check out articles on the sacrotuberous ligament as it has direct contact with the pudendal nerve and can be a source of entrapment. Like other pelvic floor therapies this ligament can be treated with proper physical therapy. However, if all of your conditions started with the surgery I would again suggest that you discuss in detail with your surgeon exactly what procedure was done and where are the possibilities that the nerve could have been damaged or compromised. Most surgeons will try to reject such a meeting but I would insist as it may direct you to the exact point that is causing your issues.

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@bkruppa

My wife's pudendal nerve pain started after a bout with shingles in that area. However, doctors have concluded that her pain is not nerve damage but something else. After 8 years of seeing all kinds of doctors the only thing she is getting from the medical industry is prescriptions for pain meds. Most of what I suggest to doctors is foreign to them and personally I believe they don't believe in any of it.

From what I've researched the pelvic area and particularly the pudendal nerve is very complex and most neuro doctors won't even touch that area since like males in the same area much harm can be done if procedures are done incorrectly. A male friend of mine had a prostectomy that apparently didn't go right and he has more problems in that area that you can imagine and all due to nerve damage.

Scar tissue can entrap the pudendal nerve as well as muscle entrapments which is what I believe my wife's pain is due to. If you didn't have this pain prior to surgery you should discuss the procedure with your surgeon in detail to see if there was a possibility of damage to the pudendal nerve. Also if muscle or scar tissue is the cause then do a search on PNE (Pudendal Nerve Entrapment) to find a local facility (doesn't have to be a doctor) who specializes in these non-evasive treatments.

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I have suffered with Pudendal nerve for 8 years also after surgery.I have found doing loads of accupuncture brings the pain down a lot.But I have been on crutches for 2 years now cos of it.I do accupuncture every week.However my accu was on hols so went to Chinese lady while he was away and ended up in huge pain as she decided pressing down on the area where I had all the pain and massively aggravated it.Back in huge pain again, so very angry,thanks to her.

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@eifeltower

I have suffered with Pudendal nerve for 8 years also after surgery.I have found doing loads of accupuncture brings the pain down a lot.But I have been on crutches for 2 years now cos of it.I do accupuncture every week.However my accu was on hols so went to Chinese lady while he was away and ended up in huge pain as she decided pressing down on the area where I had all the pain and massively aggravated it.Back in huge pain again, so very angry,thanks to her.

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@eifeltower Oh that hurts So sorry you had to endure that I had a massive who did same ,I have Fibromyalgia. I have you ever done Tapping? It's Chinese accupressure and rewire the brain with pain,anxiety and blockages from your past If interested go to Tapping com

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@lioness

@eifeltower Oh that hurts So sorry you had to endure that I had a massive who did same ,I have Fibromyalgia. I have you ever done Tapping? It's Chinese accupressure and rewire the brain with pain,anxiety and blockages from your past If interested go to Tapping com

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Can you give us more information on how well did it work for you? How long did it take before you saw results of pain relief? Any special tapping techniques that you used?

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@bkruppa

Can you give us more information on how well did it work for you? How long did it take before you saw results of pain relief? Any special tapping techniques that you used?

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@bkruppa Once you learn about it it only takes 5-10 minutes look up http://www.Tapping solution.com Y tube also has information It is Chinese accupressure and psychology rewireing how you think if past blockages and more

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@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.

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New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012, and I have seen a number of specialists who have conducted all of the studies you mention and performed all of the procedures you mention. The end result, I'm sorry to say, is that the pain persists in much the same way as it does for your wife. I am male, and most of the specialists I have seen deal with this issue in female patients, which makes diagnoses and treatment even more difficult. For pain, I have been prescribed Diclofenac 75mg twice daily since my first (non-related) cervical spine surgery in 2009. The medication does not affect the pain in the pudendal region, and at this point my new primary care physician at Mayo is concerned about long term use in general.

I can certainly empathize with folks who have said that this condition is a 'lonely' problem, both because it is more rare in the general population and there apparently is not much data for physicians to access. It is also very difficult to have a conversation about the issue with anyone other than a physician or a family member, so I typically 'suffer in silence' most days, and feel grateful on the rare occasion when the pain is negligible for a day or so.

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PNE is not "rare" from what I've researched. There are clinics all over the country that treat this condition. However, I would assume that any entrapped nerve could be treated in a similar manner.

Your last sentence is encouraging in that my wife experiences the same variation in levels of pain. I questioned doctors at the Mayo Clinic about this and they concluded that the nerve is NOT damaged. This is good news since from what I've read there is no cure for damaged nerves. There are cures for entrapped nerves but you just have to find the source of entrapment. I've been told about a couple of instances that supports the notion that scar tissue can be the source of entrapment. A surgeon said that he did a hernia repair and after some time the patient incurred pain. I'm going to assume this was from the formation of scar tissue on a nerve. In another case a physical therapist indicated that he sees a lot of cases of torn rotator cuffs and where the scar tissue has entrapped a nerve and caused pain. In this case he said that surgery was able to fix the entrapment problem.

Another neuro doctor that my wife is seeing said that the source of pain could be at the nerve roots which are located at the spine. My question to him was what is causing these roots to become inflamed? Rather than shoot meds at the roots let's instead find out why they are inflamed. I didn't get any response from the doctor on this approach.

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new member here, i have been suffering with "for lack of better words" butt pain since 2013. It is mainly on the sit bones. My urologist, who treats me for IC, told me this was caused from the pudendal nerve. He was actually able to do an internal exam and press on the location, which cause the exact pain that if feel. Unfortunately, there is no one in my area who specializes in the pudendal nerve. So basically I don't know if it is entrapment or something else. I do know the pain has intensified and now includes spasms in the anus area.

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Sorry to hear about your PN pain. The pudendal nerve affects the anus as well as other areas of the pelvic floor so what you are experiencing is probably due to an entrapment issue with this nerve. There are clinics that try to stretch various muscles that could entrap the pudendal nerve. Some people get relief within a couple of weeks, some in a year or two, and some never experience relief. From what my wife has gone through you just have to keep searching to find the cause of the entrapment otherwise the only help doctors will give you is pain medication. My wife's pain levels like yours has intensified also. No one can say why but the pain has increased.

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@melissahebert

new member here, i have been suffering with "for lack of better words" butt pain since 2013. It is mainly on the sit bones. My urologist, who treats me for IC, told me this was caused from the pudendal nerve. He was actually able to do an internal exam and press on the location, which cause the exact pain that if feel. Unfortunately, there is no one in my area who specializes in the pudendal nerve. So basically I don't know if it is entrapment or something else. I do know the pain has intensified and now includes spasms in the anus area.

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Stretching and exercise for hip flexors may help. If you suspect an internal trigger point may be responsible (you have evidence of that) you could contact pelvic therapies (Carlsbad, CA) and get an LA wand and try some self treatment. They have training videos on their website. Also, you could try and find a physical therapist that can do internal and external Myofascial release – but they might be few and far between, depending on where you are at. I have tension near the tuberosities, too, with sit pain. Somehow nerves are compressed, irritated triggering tension. It’s a viscous cycle detailed in the book “headache in the pelvis”.

My DDD probably fuels it for me but proper stretching and exercise (Pilates reformer, TRX suspension for core and do intense psoas / hip flexor stretches, too, and very deep breathing to release tension (while I exercise)) really helped me. In your case, I’d think internal massage is needed along with stretching and exercise. The “headache” authors advocate a whole program including internal massage. You’ve got to get those muscles relaxed and they’re also all connected (as are the nerves). Good luck!

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I THINK I HAVE IN THAT I SUFFER FROM VERY BAD PAIN IN BOTH BUTTOCKS WHEN SITTING AND I DO HAVE PERIPHERAL NEUROPATHY HELEN

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@richman54660

Stretching and exercise for hip flexors may help. If you suspect an internal trigger point may be responsible (you have evidence of that) you could contact pelvic therapies (Carlsbad, CA) and get an LA wand and try some self treatment. They have training videos on their website. Also, you could try and find a physical therapist that can do internal and external Myofascial release – but they might be few and far between, depending on where you are at. I have tension near the tuberosities, too, with sit pain. Somehow nerves are compressed, irritated triggering tension. It’s a viscous cycle detailed in the book “headache in the pelvis”.

My DDD probably fuels it for me but proper stretching and exercise (Pilates reformer, TRX suspension for core and do intense psoas / hip flexor stretches, too, and very deep breathing to release tension (while I exercise)) really helped me. In your case, I’d think internal massage is needed along with stretching and exercise. The “headache” authors advocate a whole program including internal massage. You’ve got to get those muscles relaxed and they’re also all connected (as are the nerves). Good luck!

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@melissahebert
I also forgot to mention that I had piriformis syndrome (buttocks spasms & can cause sciatica) and all kinds of tension in upper legs, too (tight IT bands, tight areas/ trigger points in quads, glutes and upper hamstrings). I learned all this working with various therapists. Again, stretches and exercises for piriformis, glutes, may help you. Trigger points in that area can refer pain and tension to the buttocks and anal area. TRX suspension core routines work glutes well, try the figure 4 stretch against a wall for pirifirmis (or get a piristretcher from miracle stretch). Rollga foam rollers are good, too, for rolling legs and glutes. Electrical stimulation of tight areas might help. Some chiropractors have e-stim or you can buy a TENS/EMS unit for yourself. Try rolling tennis balls or 4 or 5 inch massage balls on the glutes or along the upper hamstrings to get rid of trigger points (you may need to rest on trigger points for several minutes to get rid of them). Try the other suggestions in my last post, too. Yes Myofascial pain and tension is probably caused by some type of nerve compression – but it can be made better or made to go away with the right stretches and exercises (possibly). Mine got a lot better. I still have a little sitting pain is all. Try everything, and listen to your body. BTW, a TRX system, a Rollga roller (these are curved) a TENS /EMS system and a pelvic therapy wand will probably cost you less than 1-2 Myofascial release treatments will cost. My thinking is getting rid of this was a do it yourself project for me – but I actually enjoy stretching and exercising. Good luck.

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@melissahebert This is post 3, with prior ones in this forum – sorry – but I can't edit prior posts – so there is more information, below. I am not a Doctor so this is not a diagnosis. However, spasms, and pain in an area are generally part of myofascial pain. Medical Doctors are notoriously ignorant about muscuar pain and it's consequences. Nerves aren't necessarily always "entrapped" but rather compressed, irritated. This may repeat some of what I said but, you'll may want to google "trigger point massage" and look for stretches for all areas of your hip (both front and back) and do them. That being said, overdoing trigger point massage can cause some pain and often the "tension" is internal – and you have evidence of that. That's where the stretching and exercise can help for the internal (as well as the LA wand).
Also, I found working the stairclimber at gym as well as weights, pilates, TRX (I talked about that in my prior posts). I also use an inversion table as I have some degenerative disc disease. Supplements helped too, maybe, I am taking 1 tsp of hemp seed oil extract orally, resveratrol supplement + quercetin supplement and 1 carnitine seemed to help me, too (see Amazon). For exercise, stretching physical therapists and knowledgeable massage therapists were the most helpful. I finally found a certified massage therapist in the Palm Desert, CA area called MRT (muscle repair therapy) that does intense ultrasound and stretching – that helped me immensely but I had a history of doing tough martial arts including Judo with breakfalls on the legs / hips so some of my issues were due to scar tissue he's remodeling (and it's working). If you can take heat you can lay on jade stone far infra red heating mats, too – that heat penetrates (however, if nerves are irritated and that is the source of your pain it could get worse ((supplements can help that)). Check and see. I personally went away from ice because it tends to cause trigger points. However, I bet you'll find stretching and exercise (and very deep inspirations) will help you the most. Try stretching the piriformis and all kinds of other muscles and make sure you don't have weak muscles. Muscle imbalances as we get older can happen and a weak muscle is a tight muscle (i.e. "piriformis syndrome" – stretch it and do "clamshells" with some resistance bands). Glute spasms can be caused by piriformis syndrome (other tight muscles would cause spasms near the anus; TRX workouts will help with weak back and glutes and weak core). It's all connected but you can get it all to relax. It isn't permanent even if you've had it a long time – but, that being said, chronic pain gets harder to get rid of the longer it goes on. Books to read: Headache in the Pelvis, Life after pain (Kuttner) and Pain Free (Egoscue) – but I prefer more intense exercises than his simple e-cises ("A muscle that does not move becomes a muscle that can not move" -Egoscue). Also, "Heal Pelvic Pain" (Stein) is good. When you get nerve compression and possibly whole regions of tension – like I had. You may have tension you're not really aware of – you just feel the pain/ spasms/ other nerve pain (burning/tingling) and even other parasthesias (altered sensations also including sweating and ciruculatory effects). Good luck. Work hard and you can get your life back! I really suspect you just have myofascial pain in a region and it can be conquered. The Headache in the Pelvis authors point that out – everything in the hips and back is so tightly innervated together that often people have multiple problems that are related (i.e. back pain / hip pain / spasms / IBS, etc.). Those nerves are all connected. Free the nerves! That's a lot of info – and my last post, I should think, but that is what helped me after two long years to get rid of most of my pain in the lower back, glutes, sciatica, and ease IBS symptoms.

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