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.

@jenniferhunter

@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/

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We are looking into this kind of treatment and as it turns out there is a therapist in our home town. However, I'm not sure this is the cause of my wife's pain because it (the pain) can vary from a 1 or 2 level to other times a 7, 8, or 9 level. I would think that a myofacial condition, like a damaged nerve, would cause more constant pain. But at this point in time we will try anything. In reading all of these various causes of chronic pain issues the difficult part is choosing the right treatment and more importantly finding the source of the pain. All of the possible causes like PNE, MYF, sacrotuberous muscle, psoas, pudendal nerve root issues, spinal issues, etc. all result in pudendal nerve pain. So far no treatment that my wife has had including steroid injections to the nerve, have produced any results that would lead one to believe they know the cause/source of the pain.

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@bkruppa Have any of the doctors offered your wife to try the combination of oxytocin troches and ketamine troches? The work together to relieve pain. They work better than the fentanyl patches I had for many years. If this combination works the doctor may offer ketamine infusions.

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@bkruppa

We are looking into this kind of treatment and as it turns out there is a therapist in our home town. However, I'm not sure this is the cause of my wife's pain because it (the pain) can vary from a 1 or 2 level to other times a 7, 8, or 9 level. I would think that a myofacial condition, like a damaged nerve, would cause more constant pain. But at this point in time we will try anything. In reading all of these various causes of chronic pain issues the difficult part is choosing the right treatment and more importantly finding the source of the pain. All of the possible causes like PNE, MYF, sacrotuberous muscle, psoas, pudendal nerve root issues, spinal issues, etc. all result in pudendal nerve pain. So far no treatment that my wife has had including steroid injections to the nerve, have produced any results that would lead one to believe they know the cause/source of the pain.

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@bkruppa I can tell you that my pain from fascial tightness fluctuated and it sometimes depended on how much stress or difficulty I had in the week leading up to it. I could sleep in a position that triggered spasms and it got worse, but I made gradual improvements, and sometimes, there was a breakthrough session where I improved a lot, but all the previous treatment lead up to that. That's a question to ask the MFR therapist. Fascia is always remodeling and tends to get tighter unless you are doing something to stretch and loosen it. Anxiety and fear increase tissue tightness and pain significantly. The body also gets stuck in poor alignment that can cause nerve compression. With MFR, it can be a net of tight fascia that passes through the whole body. I know for myself, that I can feel the tightness pull from my neck and chest through my hips and to my ankles and it is a bit different every week as we work through the layers.. It might take a while to develop that kind of body awareness, but i can tell my therapist where the pull goes and how it changes while she is treating me. She can feel it too through her hands.

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You have described the Myofascial Release (MFR).process precisely. It does take time and you do increase your body awareness. We do alignment every day as a part of our yoga practice. Amazing how good it feels when you imagine a string from your nose to between your toes and it is perfectly straight. Maybe a small thing and yet so important.
Be safe today and free of suffering and the causes of suffering, Chris

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@jenniferhunter

@bkruppa I can tell you that my pain from fascial tightness fluctuated and it sometimes depended on how much stress or difficulty I had in the week leading up to it. I could sleep in a position that triggered spasms and it got worse, but I made gradual improvements, and sometimes, there was a breakthrough session where I improved a lot, but all the previous treatment lead up to that. That's a question to ask the MFR therapist. Fascia is always remodeling and tends to get tighter unless you are doing something to stretch and loosen it. Anxiety and fear increase tissue tightness and pain significantly. The body also gets stuck in poor alignment that can cause nerve compression. With MFR, it can be a net of tight fascia that passes through the whole body. I know for myself, that I can feel the tightness pull from my neck and chest through my hips and to my ankles and it is a bit different every week as we work through the layers.. It might take a while to develop that kind of body awareness, but i can tell my therapist where the pull goes and how it changes while she is treating me. She can feel it too through her hands.

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Very good information. We are in the process of working with our local MFR therapist. Thanks.

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@bkruppa

We are looking into this kind of treatment and as it turns out there is a therapist in our home town. However, I'm not sure this is the cause of my wife's pain because it (the pain) can vary from a 1 or 2 level to other times a 7, 8, or 9 level. I would think that a myofacial condition, like a damaged nerve, would cause more constant pain. But at this point in time we will try anything. In reading all of these various causes of chronic pain issues the difficult part is choosing the right treatment and more importantly finding the source of the pain. All of the possible causes like PNE, MYF, sacrotuberous muscle, psoas, pudendal nerve root issues, spinal issues, etc. all result in pudendal nerve pain. So far no treatment that my wife has had including steroid injections to the nerve, have produced any results that would lead one to believe they know the cause/source of the pain.

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@bkruppa Myofascial conditions are not likely to cause constant pain. It is often variable. Also, the compression on the nerves isn’t equal to damage. Remove the tightness and you may get partial or full relief. There are stories of people who’ve had pain for years that can be relieved by the proper treatment. Yes, you may never know the source of the pain – but mainly look for what works. Good luck.

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@richman54660

@bkruppa Myofascial conditions are not likely to cause constant pain. It is often variable. Also, the compression on the nerves isn’t equal to damage. Remove the tightness and you may get partial or full relief. There are stories of people who’ve had pain for years that can be relieved by the proper treatment. Yes, you may never know the source of the pain – but mainly look for what works. Good luck.

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This is good news and answers some of the questions we have about variable pain. My wife is making an appointment with a local MFR therapist. I must say that I've received more helpful information on how to move forward with this chronic pain issues than I have with doctors over the past 8 years. Thank you.

Liked by Jennifer Hunter

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how do you find an MFR therapist — I am only finding a few in the Twin Cities area when I search on google

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@lois6524

how do you find an MFR therapist — I am only finding a few in the Twin Cities area when I search on google

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@lois6524 Here is a link to search for a myofascial release MFR therapist https://myofascialrelease.com/find-a-therapist/

I created a discussion to organize information about MFR at
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I have not posted in a while. I had pelvic vein embolization on 11/30/18.
the next day I started having tingles down my leg, pain, pain in my buttocks and burning pain in my crotch area. For 5 weeks the surgeon kept telling me it was normal, and likely due to the compression shorts I had to wear 24/7 for 30 days. My pain was constant and approximately a level 7. Finally after 5 weeks I was able to get the surgeon to see me again, when I mentioned I thought I had a problem with my pudendal nerve ( which I discovered via internet). The surgeon then agreed that I probably should have come out of the compression shorts sooner, but nerves recover. He was no help. I have also seen a neurologist who thought based on the examination, the notes from my surgery and my feedback, that I had sciatic and pudendal neuralgia. Because my pain intensity decreased from a 7 to a 4-5 after I stopped wearing the compression shorts, he said he felt the nerves might heal, but it will take 9-12 months. In the meantime he suggested physical therapy, restorative yoga, and active release therapy. He said I would have been better off on a padded operating table as the procedure was 2.5 hours, and that it take only 20-30 minutes for a nerve to be damaged without blood flow/oxygen. His best guess was that the way I was positioned cut off the circulation to my left leg, causing the problem, which was then exasperated by the compression for 30 days.

So, I am spending lots of money right now, seeing a physical therapist weekly, paying for yoga and seeing the active release therapist as well. I will say that some days/weeks the pain is down to a 2-3. Some days/weeks it is back to a 5. I cant find a reason for the change, as many of you have also expressed. I believe that lack of understanding/control of our pain is the worst part of the journey. I would encourage others out there to also try the active release. There are probably other parts of the body that are tight/out of whack because of the compensation we must do to try and sit without tremendous pain and discomfort. The neurologist felt confident that my gait was probably different, which can then lead to knee or back issues.

I dont have the answers. Sometimes looking on this site makes me more depressed – sometimes I find it helpful. I have also turned to daily meditation (something I never did) and I am even seeing a Healing Touch practitioner I found through a local hospital. Both of those have helped. I am a person who tends to "carry on" no matter what, and both of these practices have brought tears from me that I didnt know I was holding in. I am sure many of us are in that same situation. I would recommend that anyone try both of these as well. I figured that any type of assistance was something to try and be hopeful about.
I hope all reading this find some relief today!

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It sounds to me like you have sciatica which is where you have pressure on your sciatic nerve. Find you a good Neurologist.

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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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Hi,
How did the inversion table work for her nerve? I was just thinking that myself. So glad to find a post. Debbie

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@lkeit

I am curious to know if you have any further successes? I had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, selling and pain. I never had pelvic pain. I woke up the day after the surgery with numbness and tingling in my buttocks and vulva area. The surgeon said it would pass. I had to wear compression shorts for 30days and was in agony. My insides were pressing agains my outside which was being compressed by the compression shorts. I finally demanded to be seen by the surgeon 37 days after surgery and 1 week after being out of compression shorts. Doing my own research I said I thought I had pudendal neuropathy – I am textbook case for all of the symptoms of pain, tingling, burning and numbness and pressure. I feel lucky not to have any incontinence issues. My surgeon said since it is inconsistent it is not damaged and will improve, that I just need to be patient. Meanwhile I am trying to go to work, care for my family and have a normal life. Some days are better than others. Today is a bad day, and it isn’t an illness you really want to publicize as it is such a private area of the body. Additionally I have suffered from fibromyalgia for,the last 10years. I don’t take any prescriptions, and try to be sugar and gluten free to reduce inflammation.

Does anyone have any advice for me? I live in Cincinnati. I don’t know what type of doctor to see- the surgeon has never in 20years had this happen. I would love to know what type of doctors other are seeking for help, and what is helping. I would be very reluctant to have another surgery since I am significantly worse off than when I had the first procedure.

Thank you

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We currently are looking into and having treatments called MFR or MyoFacialRelease. This is the area between the outer skin and muscles or between two muscles. Normal action of this area is to allow one part of the body to slide over the other like one muscle over the other muscle. The theory is that if one is inactive for a long period of time (like my wife was with the shingles episode and bed ridden for about 3 months) this layer can become hardened and not work as it normally would. It can also entrap nerves that pass through this area which can cause pain. Treatment for MFR is specialized massaging techniques that help restore this area to it's original fluid from a harden state. We have also tried some new dual beam laser treatments that offer temporary relief but nothing permanent.

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@dcutro

Hi,
How did the inversion table work for her nerve? I was just thinking that myself. So glad to find a post. Debbie

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We haven't tried the inversion table yet since some doctors advised against that when you have high blood pressure. So I am looking for a non-inverting technique (traction) that will stretch/align the spine in a similar way. The real problem is that doctors don't seem to buy into any of this as they all suggest pain meds instead. So it is difficult to follow any of these other paths as there is little support or experience to draw upon.

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@richman54660

@bkruppa Myofascial conditions are not likely to cause constant pain. It is often variable. Also, the compression on the nerves isn’t equal to damage. Remove the tightness and you may get partial or full relief. There are stories of people who’ve had pain for years that can be relieved by the proper treatment. Yes, you may never know the source of the pain – but mainly look for what works. Good luck.

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Regarding nerve compression vs damage this was a major question that I had to the doctors at the Mayo Clinic. The answer I received was that if the degree of pain varies then most likely it is due to compression whereas if the pain is constant the nerve probably is damaged. My wife's pain can vary from and 8 or 9 to a normal 7 to a low of 2 or 3 so we are hoping that the nerve is compressed rather than damaged which by the way there is no cure for.

Liked by Jennifer Hunter

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