Pudendal Nerve Entrapment/Neuropathy/Damage

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?

@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

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.

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.

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.

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.

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!

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

@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.

@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.