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.

@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

Jump to this post

@bkruppa this is typical of peripheral nerve enteapment pain or peripheral nerve compression, imo. I have the same thing with my leg, i feel worse after using my leg too much and best if I rest. I'm going thru surgeries now to get entrapments fixed.

REPLY
@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

Jump to this post

@bkruppa Do you think it might be what she is doing during the day that increases pain? Does she sit most of the day and is this when she has more pain? Is there less pain laying down when her legs are extended? What I think about is the psoas muscle. It attaches on the inside on the ilium or the "hip bones" and connects to the spine, and sitting shortens this muscle. Because it affects the pelvis and the alignment of the bones that form the pelvis, shortening might increase her pain. That would also shorten her strides when walking. I have to stretch when mine get shorter with lunges or even standing against a door frame and pressing a small ball inside the ilium to release the muscle. These could be questions to ask of her therapist. Perhaps keeping notes on what position she is in when pain increases would be helpful, and what positions are less painful.

REPLY

@bkruppa, I have been through now 20 plus years of this. I havent read all of the posts, but I dont see anyone suggesting what has worked best in my case; which is a combination of cymbalta and lyrica. I HATE to be on these drugs, especially cymbalta. But the synergy of these two drugs together has been the ONLY thing that calmed the nerve pain.
I would be very interested to see if anyone else has tried this. It has worked successfully for diabetic nerve pain as well — both are peripheral nerves.

REPLY
@lkeit

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

Jump to this post

Yes been dealing with it since 2004.

REPLY
@dorcee

@bkruppa, I have been through now 20 plus years of this. I havent read all of the posts, but I dont see anyone suggesting what has worked best in my case; which is a combination of cymbalta and lyrica. I HATE to be on these drugs, especially cymbalta. But the synergy of these two drugs together has been the ONLY thing that calmed the nerve pain.
I would be very interested to see if anyone else has tried this. It has worked successfully for diabetic nerve pain as well — both are peripheral nerves.

Jump to this post

@dorcee I also have the lyrica and cymbalta combo and I also hate it. I used to weigh 90lbs. and I've gained 40lbs, not to mention the side affects.I have to agree though, that is does help. My nerve pain is still progressing. I still can't have anything touch my skin anywhere on my right hip, butt, leg, and foot. I do have pain as well but nothing like I was experiencing.

REPLY
@qball2019

@dorcee I also have the lyrica and cymbalta combo and I also hate it. I used to weigh 90lbs. and I've gained 40lbs, not to mention the side affects.I have to agree though, that is does help. My nerve pain is still progressing. I still can't have anything touch my skin anywhere on my right hip, butt, leg, and foot. I do have pain as well but nothing like I was experiencing.

Jump to this post

@qball2019 do you have chronic regional pain syndrome (CRPS)? Also, have you tried other nutritional supplements that calm the nerves. I take 1 tbsp hemp seed oil, various flavonoids including soy isoflavinoids, quercetin, rutin, resveratrol (always with food). These may help somewhat. You can purchase these on amazon or at vitamin shops.

My pain is sitting pain now and it is much better but at one point I had large regions of tension in glutes, legs and back and various sciatica symptoms along with back pain. Probably mostly from lower lumbar ddd. Often the nerve pinch is above the pain points. Has your doctor ordered a back / hip mri? For me, stretching, exercise (detailed in several other posts here by me), nortriptyline, inversion table, and the supplements really helped get rid of most of my nerve pain. I do think the supplements help somewhat. Good luck.

REPLY
@richman54660

@qball2019 do you have chronic regional pain syndrome (CRPS)? Also, have you tried other nutritional supplements that calm the nerves. I take 1 tbsp hemp seed oil, various flavonoids including soy isoflavinoids, quercetin, rutin, resveratrol (always with food). These may help somewhat. You can purchase these on amazon or at vitamin shops.

My pain is sitting pain now and it is much better but at one point I had large regions of tension in glutes, legs and back and various sciatica symptoms along with back pain. Probably mostly from lower lumbar ddd. Often the nerve pinch is above the pain points. Has your doctor ordered a back / hip mri? For me, stretching, exercise (detailed in several other posts here by me), nortriptyline, inversion table, and the supplements really helped get rid of most of my nerve pain. I do think the supplements help somewhat. Good luck.

Jump to this post

@richman54660 Thank you for the supplement recommendations. I do have some that I take including PEACure, B vitamins, Acetyl L-Carnitine, Alpha Lipoic Acid, Green Tea, Magnesium, etc.Those are on top of my medications which include Tramadol, Lyrica, Cymbalta, etc. I've had MRI's of my whole body over the last 15 years. I do have a bunch of degenerative changes, sciatica, muscles spasms in my lower back every time I try to stand up straight, Lots of nerve pain from the lower back down. The doctor just mentioned that he thinks I have peripheral neuropathy in the butt cheek and going down my legs to my feet. Physical therapy dishcharged me because it was making the nerve pain worse. I can't exercise at all. I have a hard time standing, sitting, walking, etc. I'm basically bedridden right now.

REPLY
@jenniferhunter

@bkruppa Do you think it might be what she is doing during the day that increases pain? Does she sit most of the day and is this when she has more pain? Is there less pain laying down when her legs are extended? What I think about is the psoas muscle. It attaches on the inside on the ilium or the "hip bones" and connects to the spine, and sitting shortens this muscle. Because it affects the pelvis and the alignment of the bones that form the pelvis, shortening might increase her pain. That would also shorten her strides when walking. I have to stretch when mine get shorter with lunges or even standing against a door frame and pressing a small ball inside the ilium to release the muscle. These could be questions to ask of her therapist. Perhaps keeping notes on what position she is in when pain increases would be helpful, and what positions are less painful.

Jump to this post

I will check into the psoas muscle. The sacrotuberous muscle also cross over the pudendal nerve and can be the source of pain. The problem is getting a doctor to help in locating where the entrapment problem is. Just every doctor we've been to just wants to prescribe meds.

The low grade pain is random. Most mornings when she gets up the pain level is lower but some days it is much lower. So this is a morning thing WHEN it occurs. During the day she is usually up and around but of course when sitting in the car or sitting anywhere the pain worsens. So we will check into the psoas muscle. We are also looking into an inversion table to straighten out her spine since given that she favors sitting on her right buttocks to keep any pressure off of the left buttocks. The thought is that due to this position something has gone abnormal and now is pressing on the pudendal nerve.

REPLY
@dorcee

@bkruppa, I have been through now 20 plus years of this. I havent read all of the posts, but I dont see anyone suggesting what has worked best in my case; which is a combination of cymbalta and lyrica. I HATE to be on these drugs, especially cymbalta. But the synergy of these two drugs together has been the ONLY thing that calmed the nerve pain.
I would be very interested to see if anyone else has tried this. It has worked successfully for diabetic nerve pain as well — both are peripheral nerves.

Jump to this post

She tried lyrica but had a bad reaction to it so she never really was on it for a long period of time. She takes gabapentin and tramadol.

REPLY
@bkruppa

I will check into the psoas muscle. The sacrotuberous muscle also cross over the pudendal nerve and can be the source of pain. The problem is getting a doctor to help in locating where the entrapment problem is. Just every doctor we've been to just wants to prescribe meds.

The low grade pain is random. Most mornings when she gets up the pain level is lower but some days it is much lower. So this is a morning thing WHEN it occurs. During the day she is usually up and around but of course when sitting in the car or sitting anywhere the pain worsens. So we will check into the psoas muscle. We are also looking into an inversion table to straighten out her spine since given that she favors sitting on her right buttocks to keep any pressure off of the left buttocks. The thought is that due to this position something has gone abnormal and now is pressing on the pudendal nerve.

Jump to this post

Request her records and read through to see if there are any "incidental findings". There may be something else causing the issue. I can't sit on my right butt cheek at all and I have multiple Tarlov cysts in my sacral area pinching those nerves. Sounds awfully familiar. Please keep us posted if you find something that helps the pain.

REPLY
@bkruppa

I will check into the psoas muscle. The sacrotuberous muscle also cross over the pudendal nerve and can be the source of pain. The problem is getting a doctor to help in locating where the entrapment problem is. Just every doctor we've been to just wants to prescribe meds.

The low grade pain is random. Most mornings when she gets up the pain level is lower but some days it is much lower. So this is a morning thing WHEN it occurs. During the day she is usually up and around but of course when sitting in the car or sitting anywhere the pain worsens. So we will check into the psoas muscle. We are also looking into an inversion table to straighten out her spine since given that she favors sitting on her right buttocks to keep any pressure off of the left buttocks. The thought is that due to this position something has gone abnormal and now is pressing on the pudendal nerve.

Jump to this post

@bkruppa Be sure to check with your doctor. What does the MRI or xrays of back show? The doctor may like or not like the inversion table aspect (opinions vary). Be aware, it is clearly counterindicated with high blood pressure. Your blood pressure in your brain goes up somewhat – so you don't necessarily want to overdo inversion, either. Also, it is more important to do it frequently than for a long time (i.e. I still work but do it am and evenings; you could do 2-4 times a day for a few minutes each if you're home a lot). I got some of that info off the Teeter website. One pain Dr. told me don't try doing it when muscles are "cold" as you can trigger spasms (those of us with DDD know all about those spasms) – so I do a couple minutes of inversion at the end of my stretches / TRX suspension exercises – not first thing when I get up in the morning and you're stiff).

You need to go slowly unless your vertebrae can handle it (I could go fully inverted from the start – but my bulges aren't too bad and I also hung from my hands at the gym to elongate my spine every other day before buying the table (but hanging upside down is more mass on the lower back and vertebra crack and make popping sounds from higher up when I invert -it does work). I bought the Ironman inversion table on Amazon (comfortable ankle clamps – but I wear boots when clamped into the machine), Teeters are well known but a little pricier. As I mentioned, and everyone is guessing when it comes to pain in these regions of the body, but one of the therapists I've been working with told me two things I think are true statements. One thing he said: "If pain changes with time, it's most likely not (at least fully) structural." That being said, the soft tissues clamping on nerves are probably a common source of pain – not a ligament (bones and ligaments = structural; the pain wouldn't be as likely to vary much from hour to hour and day by day). It sounds like your wife's pain changes with time (as done mine. I'm 100% sure my pain is muscles clamping on nerves, but a nerve pinch does exist up above complements of my lumbar discs, I suppose). Second, he told me minor bulges can be remedied or bettered using an inversion table. All the things I've done, including the inversion table and other stretches / exercises (I mentioned psoas / quadratus lumborum / extermely deep inspirations / separately in other posts) all can help. In the reviews for inversion tables, many people with DDD and sciatica raved about how some of the pains got better / went away. Many do swear by these tables if the nerves are getting pinched. You get a lot of ideas and knowledge from reading the comments about the inversion tables from user reviews. The Ironman on Amazon was about $200.00, I think, and it is heavy to move – not real portable. I've tried a Teeter at my brother in law's house. I like my ironman better. I still use it everyday.

REPLY
@bkruppa

I will check into the psoas muscle. The sacrotuberous muscle also cross over the pudendal nerve and can be the source of pain. The problem is getting a doctor to help in locating where the entrapment problem is. Just every doctor we've been to just wants to prescribe meds.

The low grade pain is random. Most mornings when she gets up the pain level is lower but some days it is much lower. So this is a morning thing WHEN it occurs. During the day she is usually up and around but of course when sitting in the car or sitting anywhere the pain worsens. So we will check into the psoas muscle. We are also looking into an inversion table to straighten out her spine since given that she favors sitting on her right buttocks to keep any pressure off of the left buttocks. The thought is that due to this position something has gone abnormal and now is pressing on the pudendal nerve.

Jump to this post

Hi there, I do not have this problem, but I’m a PT and we have actually more people than you would think with this or very similar problem.
I did not read through prior feeds so this may have already been suggested, but see if you can find a pelvic floor specialist (PT) or one that knows how to do nerve glides for this region as it may not be just the pudendal nerve as there are many nerves off the lumbosacral plexus and if the fascia is tight surrounding it (yes-psoas definitely could be clamping down causing symptoms) then those muscles and tissues need to be released.
If she has been sitting funny bc of it she likely has some thoracic and lumbar alignment issues now and may have a ‘functional’ scoliosis developing (functional meaning she wasn’t born with it, but bc of postural dysfunction her muscles have pulled her spine into various curvatures that is correctable with both manual therapy and specific neuromuscular re-education). These postural faults could also be causing or feeding into the problem even if it gives temporary relief sitting like that.
The pelvis and sacroiliac joint need to be assessed and corrected if out of alignment.
So basics that any good manual PT (one that specializes in manual therapy) can do is correct lumbar facet dysfunction followed by pelvic dysfunction, followed by releasing the tissue throughout that whole region as the fascial system overlaps and even her abdominal fascia up to her ribs I bet is tight as well as in her low back, pelvis and down to both knees.
Lastly, I’d work on checking nerves you can glide (sciatic, femoral and obturator) and do some nerve glides, teach how to perform at home and if a pelvic floor PT-prob knows some fancy ones that are more specific to that area.
After all that correction manually, then comes core stabilization of the transverse abdominis, pelvic floor and multifidi-basics first (Sahrmann) and then work on correcting posture (schroth-seated and sidelying).
Sorry for all that, but just wanted to help. Feel free to copy and paste and print all that out if you go to PT they’ll know what to do (if you find a good one). If they just use modalities (Ultrasound, estim, ice/heat, ionto) and exercise alone, you aren’t going to likely fix the problem. IMO. She should feel immediate relief in the first 3-4 visits-if not, may need to shop around. Look for (OCS, COMT, FAAOMPT, etc) for initials after their PT, DPT. Good luck

REPLY

Thanks for the last two posts. Let me take you back to how this all started and why I am looking into the areas that I am. My wife developed a bad case of shingles that affected the pudendal nerve. Her left buttocks and pelvic are had very intense pain that lasted for about four months. During this time she was pretty much bed ridden and favored laying/sitting on her right side. Once the shingles started to subside it appeared that in a few months the pain would be gone but unfortunately after about 3 months of the pain going down it stopped and I believe that something else kicked in. Myofacial issues due to being bed ridden for so long? Nerve entrapment given that all the areas supported by the pudendal nerve were still in pain? Sacrotuberous issues due to muscle inflammation? Spinal issues (at the root of the pudendal nerve) due to her favoring one side for so long? So there are many areas that I suspect could be the root of the problem.

Inflammatory meds like Advil help a lot so this would say the source maybe is inflammation or a strained muscle as Advil helps these conditions. My thoughts regarding an inversion table is that if the spine is cocked due to the favoring position then this would help get it back to normal. I've read much about blood pressure being a concern but question this as one's blood pressure goes up quite high when doing normal exercises and just about every doctor on earth recommends exercises and many set goals of working in your heart target ranges which is quite stressful (I don't believe in this approach). We both are senior citizens so we are at the age where muscle just don't move, stretch, reform, etc. like they did many years ago.:):) So she doesn't see instant results using any technique but she does get relief when being massaged in the painful areas. She has been to a PT who specialized in pelvic pain and while the treatments helped (mainly massaging) it wasn't lasting.

So three things seem prominent: First is that inflammation seems to be part of the problem. Second is that sitting causes the pain to get significantly worse. Third massaging helps but so far hasn't been a solution. Fourth, one neuro doctor has suggested that the source may be at the roots of the nerve which is at the spinal column. He indicated that an inversion table may help since favoring her one side may have caused one side of a disk to be compressed and therefore causing pain. Finally is the question of why some mornings her pain level is way down at a two or three level???? Other mornings it is not. That's what I'm working with. I'm thinking to take her to a normal PT clinic to work on straightening out her entire muscle system in that area. The PT specialist only worked on massaging the pelvic area.

As for your concern regarding full inversion my wife would never go to that extreme. Thirty degrees or around that angle would be the most and yes this would be after warming up the muscles. In fact she warms up her muscles before doing any stretching techniques.

REPLY
@bkruppa

Thanks for the last two posts. Let me take you back to how this all started and why I am looking into the areas that I am. My wife developed a bad case of shingles that affected the pudendal nerve. Her left buttocks and pelvic are had very intense pain that lasted for about four months. During this time she was pretty much bed ridden and favored laying/sitting on her right side. Once the shingles started to subside it appeared that in a few months the pain would be gone but unfortunately after about 3 months of the pain going down it stopped and I believe that something else kicked in. Myofacial issues due to being bed ridden for so long? Nerve entrapment given that all the areas supported by the pudendal nerve were still in pain? Sacrotuberous issues due to muscle inflammation? Spinal issues (at the root of the pudendal nerve) due to her favoring one side for so long? So there are many areas that I suspect could be the root of the problem.

Inflammatory meds like Advil help a lot so this would say the source maybe is inflammation or a strained muscle as Advil helps these conditions. My thoughts regarding an inversion table is that if the spine is cocked due to the favoring position then this would help get it back to normal. I've read much about blood pressure being a concern but question this as one's blood pressure goes up quite high when doing normal exercises and just about every doctor on earth recommends exercises and many set goals of working in your heart target ranges which is quite stressful (I don't believe in this approach). We both are senior citizens so we are at the age where muscle just don't move, stretch, reform, etc. like they did many years ago.:):) So she doesn't see instant results using any technique but she does get relief when being massaged in the painful areas. She has been to a PT who specialized in pelvic pain and while the treatments helped (mainly massaging) it wasn't lasting.

So three things seem prominent: First is that inflammation seems to be part of the problem. Second is that sitting causes the pain to get significantly worse. Third massaging helps but so far hasn't been a solution. Fourth, one neuro doctor has suggested that the source may be at the roots of the nerve which is at the spinal column. He indicated that an inversion table may help since favoring her one side may have caused one side of a disk to be compressed and therefore causing pain. Finally is the question of why some mornings her pain level is way down at a two or three level???? Other mornings it is not. That's what I'm working with. I'm thinking to take her to a normal PT clinic to work on straightening out her entire muscle system in that area. The PT specialist only worked on massaging the pelvic area.

As for your concern regarding full inversion my wife would never go to that extreme. Thirty degrees or around that angle would be the most and yes this would be after warming up the muscles. In fact she warms up her muscles before doing any stretching techniques.

Jump to this post

Thank you for all that. And as for the pelvic PT, that’s kinda crappy if they only massaged. A true pelvic floor specialist does far more specialized care. They have a certificatation for the pelvic floor (I do not, I specialize primarily in orthopedics, manual therapy and hope to learn Vestibular this year). They should have assessed mobility of spine, pelvis, hips, SIJ, etc. Hope seeing a new PT helps!!
As for the inflammation-until the problem is corrected it sounds like low level chronic inflammation that needs to go away!

REPLY
@bkruppa

Thanks for the last two posts. Let me take you back to how this all started and why I am looking into the areas that I am. My wife developed a bad case of shingles that affected the pudendal nerve. Her left buttocks and pelvic are had very intense pain that lasted for about four months. During this time she was pretty much bed ridden and favored laying/sitting on her right side. Once the shingles started to subside it appeared that in a few months the pain would be gone but unfortunately after about 3 months of the pain going down it stopped and I believe that something else kicked in. Myofacial issues due to being bed ridden for so long? Nerve entrapment given that all the areas supported by the pudendal nerve were still in pain? Sacrotuberous issues due to muscle inflammation? Spinal issues (at the root of the pudendal nerve) due to her favoring one side for so long? So there are many areas that I suspect could be the root of the problem.

Inflammatory meds like Advil help a lot so this would say the source maybe is inflammation or a strained muscle as Advil helps these conditions. My thoughts regarding an inversion table is that if the spine is cocked due to the favoring position then this would help get it back to normal. I've read much about blood pressure being a concern but question this as one's blood pressure goes up quite high when doing normal exercises and just about every doctor on earth recommends exercises and many set goals of working in your heart target ranges which is quite stressful (I don't believe in this approach). We both are senior citizens so we are at the age where muscle just don't move, stretch, reform, etc. like they did many years ago.:):) So she doesn't see instant results using any technique but she does get relief when being massaged in the painful areas. She has been to a PT who specialized in pelvic pain and while the treatments helped (mainly massaging) it wasn't lasting.

So three things seem prominent: First is that inflammation seems to be part of the problem. Second is that sitting causes the pain to get significantly worse. Third massaging helps but so far hasn't been a solution. Fourth, one neuro doctor has suggested that the source may be at the roots of the nerve which is at the spinal column. He indicated that an inversion table may help since favoring her one side may have caused one side of a disk to be compressed and therefore causing pain. Finally is the question of why some mornings her pain level is way down at a two or three level???? Other mornings it is not. That's what I'm working with. I'm thinking to take her to a normal PT clinic to work on straightening out her entire muscle system in that area. The PT specialist only worked on massaging the pelvic area.

As for your concern regarding full inversion my wife would never go to that extreme. Thirty degrees or around that angle would be the most and yes this would be after warming up the muscles. In fact she warms up her muscles before doing any stretching techniques.

Jump to this post

@bkruppa You may want to look at myofascial release to free tight fascial tissue. I do this therapy myself for thoracic outlet syndrome which is a nerve/vessel entrapment under the collar bone area and it has helped me a lot. This is similar to massage , but the therapist holds the stretch and waits for the tissue to start to slide. According to the website, it helps Pundental nerve entrapment among many other conditions. MFR can also treat surgical scar tissue in the fascia. There are providers listed for Canada (your earlier post suggested this) at this link
https://www.mfrtherapists.com/app/list.asp?state=&country=CA

I created a discussion to collect information on MFR that you can check out at
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
Please login or register to post a reply.