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.

@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.

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@bkruppa

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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I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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@mlross4508

I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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@mlross4508 That's wonderful that MFR is helping you. I would be surprised in 3 treatments are enough. Ask about how you can self treat at home for your issues. Also doing something like Yoga where you hold a stretch will also release fascia and might be a way to continue improving. Just don't stop moving after you are better because the issues can re-occur. You can keep this going after you stop treatments. We have a discussion for MFR where there is a lot of information and links. Would you join us there and copy & paste your comment to that discussion? It's good to hear success stories. Good for you!
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@mlross4508

I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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I have neuropathy in both feet. After reading this I’m going to try mfr to see if it makes a difference. Thank you for your post x

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Great. Get ready to feel the grass under bare feet again. It takes time and commitment. I an sure that the only reason I am still driving is because of MFR. Be safe and protected. Chris

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@artscaping

Great. Get ready to feel the grass under bare feet again. It takes time and commitment. I an sure that the only reason I am still driving is because of MFR. Be safe and protected. Chris

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In regards to the neuropathy of the feet, what do they focus the release on that has created great results? Is it the feet themselves etc?

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@mlross4508

I have begun my first MFR treatment of three, and I have begun to have less neuropathy in my my feet, after 2 days, and I have a sense of feeling better overall with my body. I’ve had CRPS and nerve pain for several years and this is the first treatment that I feel might really give me some long term pain relief. You need to be diligent in doing exercises st home, and communicate with your therapist what hurts and what doesn’t. I feel it’s a great procedure that had been producing results. I have tried some many different treatments, epidurals, neural stimulators, etc and this procedure has given me some hope for getting some long term relief. I know it’s early but as we know, it’s good to be optimistic.

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wht is a MFR treatment

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@gloriajean

wht is a MFR treatment

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@gloriajean MFR is Myofascial Release. We have a discussion with a collection of information about it. It helps by stretching tight fascia and releasing compression on tissues. It can help lots of problems. Here is the link.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

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@skiak22

Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

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My wife's pain is worsened when sitting down. The pain is there while standing but this does not aggravate the nerves like sitting does. Sleeping is the best part of the day as the pain seems to subside during the night. Upon wakening the pain level is lower but gradually goes higher as she becomes more active.

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