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.

Interested in more discussions like this? Go to the Chronic Pain group.

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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@richman54660

@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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Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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I have pudendal nerve spasms which are treated at my MI Pain Consultants I n Grand Rapids MI. My doctor gives me pudendal nerve blocks which give me some relief. I have terribly painful spasms in the front of both legs from the groin to the knees. Feels like my legs are being crushed. The spasms last for hours. it's either rare or no one talks about it.
Maybe you can talk to your doctor about the treatment I receive. God bless.

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@bkruppa

Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these – so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too – the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years – if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes – but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain – that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

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@richman54660

@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these – so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too – the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years – if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes – but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain – that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

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@mandee @bkruppa @sdswoboda53 @richman54660 I have no experience with Pundental nerve issues, but wanted to pass along some information that I found that might help about Myofascial Release therapy. There is a lot of information you can find at myofascialrelease.com and treating this condition is on the list. I do MFR with my physical therapist for thoracic outlet syndrome and with recovery from spine surgery and it has helped me a lot. It is a slow process and you have to work through layers, but it restores proper alignment and movement and corrects bad posture that contributes to so many problems. MFR often works where conventional therapies have failed by treating a physical problem.
https://myofascialrelease.com/about/problems-mfr-helps.aspx
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Lumbo Sacral Decompression video with John Barnes

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Hello my name is brad, new member as of today. I had a motorcycle accident in 2003 and damaged my pudendal nerve. I haven’t been able to sit at all since. I either stand or lay down which is taking its role on my body after 15 years of doing it. People don’t realize how important it is to b able to sit. The pain is constant and very severe at times. I have tried a stimulator and morphine pump both to control the pain but unfortunately the cathider and leads of the stimulated stayed constantly inflamed cuz I have to lay on my back so much. I had the stimulator and pump from 2004-2006. I have been taking morphine sulphate for 15 years now, adding lyrica and nortriptiline along the way. I tried many other meds also, but these were the ones that helped the most and were easier on my body than some of the alternatives. I’m tired of living this housebound life and am currently looking into surgery which I have avoided for all these years cuz if things go wrong it could leave me with no bowl control. My pain management dr. Is in the process of looking for the best dr. For me to c to talk to about impingement surgery, I have no idea what is going to happen or were I’m gonna have to go but I’m willing to travel anywhere for one last go at this. I feel deeply for the people having to go through this, be strong and take it day by day . I hope we can help one another by providing information here, I will definitely update my circumstances as they develop . I’d like to hear from some more people that have had the decompression/ impingement surgery please share good or bad

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Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

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