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.

@teg

Thanks for your feedback. I have never tried the above mentioned. Is this script or OTC? I really hope you are feeling some improvements and life quality.

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@teg These are strictly alternative medicine. However, there was a Japanese Pharmaceutical company called Takeda that sold it for many years. They discontinued as for the conditions they marketed Serrapeptidase it was not more effective than placebo. It wasn't a big part of their revenues. For purposes of clearing blood vessels of plaques and possibly helping tissues remodel, these may be very useful. Check out Serrapeptidase from Biomedix labs and Nattokinase from Doctors best on Amazon. Read the reviews and see what you think from people who use these. They helped me, I believe.

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Does anyone out there knows if breathing black mold can cause nerve damage??

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@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

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I was recently diagnosed with pudendal nerve entrapment. It took 13 months and going to many doctors visits to figure out what I had. I have had injections. With no help. I live in Houston Texas. Since Pudendal neuropathy is rare there are not many doctors to treat this. I recently had radio frequency ablationAnd they said it could take up to three weeks before I could feel results. It has been 2 1/2 weeks and I was in pain all day today. My last option would be surgery but I do not know that I am willing to put myself through that although this pain is excruciating and sometimes I just feel like dying because of it. I haven’t tried any pelvic physical Therapy which my doctor thinks I will benefit from! They gave me gabapentin for pain. Tramadol for pain. Lyrica for pain. And none of these things work for me. Ice packs are my best friend. The pain goes down my legs and into my feet also. I haven’t been able to find any sitting cushions that are made for this issue! This is just brutal!

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Yes I have it and it’s terrible! I have tried injections and recently just tried radio frequency ablation No help. I have been searching for a cushion for sitting where I’m not in excruciating pain. I can’t sit down at all without an ice pack on both sides Of my butt! I am given nothing for pain by doctors! Everything they have prescribed for me just not work. I am praying for you this is just terrible.

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Yes I do I’m in Houston Texas And I just got diagnosed about three months ago. I’ve done injections and recently radio frequency ablation with no help. There is not anything that has been prescribed to me that helps.

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@vklittle61

Yes I do I’m in Houston Texas And I just got diagnosed about three months ago. I’ve done injections and recently radio frequency ablation with no help. There is not anything that has been prescribed to me that helps.

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Hi there, Im so very sorry you are struggling. I have experienced brutal pain as well with no clear dx. I do know about a cushion though. They are called tush kush and they have a "U" shaped centre missing for the tailbone area and are soft and its can be carried anywhere. Worth a try. All the meds are no lasting help, I get it. There is a link on one of these chats to a physio therapist overseas"TOR" Trening Og rehab with some tips for this issue (as it sounds like youve been diagnosed) with 4 exercises and Nakktase and Serrapetase supplements some folks say helps. Take care for sure as it is just awful to cope with.

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@vklittle61

I was recently diagnosed with pudendal nerve entrapment. It took 13 months and going to many doctors visits to figure out what I had. I have had injections. With no help. I live in Houston Texas. Since Pudendal neuropathy is rare there are not many doctors to treat this. I recently had radio frequency ablationAnd they said it could take up to three weeks before I could feel results. It has been 2 1/2 weeks and I was in pain all day today. My last option would be surgery but I do not know that I am willing to put myself through that although this pain is excruciating and sometimes I just feel like dying because of it. I haven’t tried any pelvic physical Therapy which my doctor thinks I will benefit from! They gave me gabapentin for pain. Tramadol for pain. Lyrica for pain. And none of these things work for me. Ice packs are my best friend. The pain goes down my legs and into my feet also. I haven’t been able to find any sitting cushions that are made for this issue! This is just brutal!

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@vklittle61 @teg I wanted to share our Connect discussion about myofascial release. I do not have experience with pundental nerve issues, but I have done a lot of MFR myself, and it helps conditions of nerve entrapment by releasing the tight fascia that is binding everything together. Pundenetal nerve entrapment is on the list of conditions that MFR can help according to the founder of these therapy techniques, John Barnes. There is a provider search on the MFR website. https://myofascialrelease.com/find-a-therapist/

Here is our discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@vklittle61 @teg I wanted to share our Connect discussion about myofascial release. I do not have experience with pundental nerve issues, but I have done a lot of MFR myself, and it helps conditions of nerve entrapment by releasing the tight fascia that is binding everything together. Pundenetal nerve entrapment is on the list of conditions that MFR can help according to the founder of these therapy techniques, John Barnes. There is a provider search on the MFR website. https://myofascialrelease.com/find-a-therapist/

Here is our discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thank u sad o much for the information

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@teg

Hi there, Im so very sorry you are struggling. I have experienced brutal pain as well with no clear dx. I do know about a cushion though. They are called tush kush and they have a "U" shaped centre missing for the tailbone area and are soft and its can be carried anywhere. Worth a try. All the meds are no lasting help, I get it. There is a link on one of these chats to a physio therapist overseas"TOR" Trening Og rehab with some tips for this issue (as it sounds like youve been diagnosed) with 4 exercises and Nakktase and Serrapetase supplements some folks say helps. Take care for sure as it is just awful to cope with.

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@teg and @vklittle61 EXACTLY! If you are able get on the nattokinase and serrapeptidase and higher levels of vitamin C and also add quercetin and resveratrol as supplements. I basically had a bursitis / tendonitis in the glute and high hamstring region. It was stubborn. However, I believe it was from excessive fibrin (i.e. the protein involved in blood clotting) on the bursa / tendons & nerves. I had nerve pain (nerve compression; some type of myofascial pain in the glutes, and all manner of sitting pain). While speculative, the fibrin might cause not only stiffness but promotes inflammation as it naturally recruits white blood cells (granulocytes) that promote a mild autoimmune inflammation of the tissues. This is a natural process for fibrin- essentially what happens in a cut or wound – but it may be more prevalent for that process to go haywire – especially as we age. The enzymes (nattokinase / serrapeptidase) can help reverse this – a small amount is actually absorbed somehow.

I also had a prior history of plantar fascitis and also phlebitis (and pain when pressing on lower legs). This is all consistent with tissue stiffening. As you may be aware, many people are eventually put on anti-coagulants by Western medicine due to forming clots / fibrin deposition – which may be more common with age and improper healing / tissue remodeling. The enzymes and Vitamin C and stretching & exercise took care of much of it for me – I only have a little residual sitting pain now. I believe what I had could have led to many different issues including amyloid polyneuropathy (eventually) and possibly other related disorders (other neuropathies) – had I not intervened with the alternative treatments (I was getting burning and tingling down in my left foot – that is now lessened). NSAID's don't help this and that is what Western medicine tries. The stiffness and irritation can definitely cause nerve compression and nerve irritation leading to burning pains, spasms, etc., and sitting pain.

The enzymes are taken on an empty stomach (i.e. between meals). About 10% of the people get digestive issues. Most people have no
problems with the enzymes, though. You'll need to listen to your body. I've used: 2000 U nattokinase (Drs. Best in both am and pm) as well as a couple Serrapeptidase (Biomedix Laboratories brand; several different strengths are available in the am and pm, too) from Amazon. There is also a stronger enzyme called Lumbrokinase, too. Start slow and ramp your way up. See how it goes. My doctor checked and if you have a bleeding disorder or are already on anti-coagulants they might be counter indicated. Otherwise, barring you have a clotting disorder or if you have an infection (discontinue during an active infection; as infections are often walled off by fibrin). Many people use these without issue and my doctor found little information – but not much for adverse effects, either. Most likely, these enzymes are safer than Warfarin and other anti-coagulants. I am convinced the enzymes and the other supplements I mentioned above helped "cure" me of my sitting pain which maps to the pudendal and other interconnected nerves, too. At least, that was my case. I am 100% convinced about my fibrin hypothesis – for me at least. Your cause may be different – or maybe not.

In the meanwhile, there are old posts from me on here (old posts on this thread) or on the "Pain in the butt – Can't sit down" thread under chronic pain where I detailed specific cushions I used, etc., and all manner of specifics about exercise before the resolution of the sitting pain. You can look them up. While some nerve pain meds help – they won't cure the problem – they just mask the pain. Maybe for you, the enzymes as well as some pelvic floor therapy and some of the specific exercises I'd mentioned before might cure your issue. Please do your own research and fact checking. Be sure to check your blood pressure when on various supplements. They might affect it either raising or lowering it. Good Luck. Rich

Liked by lioness

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@teg

Hi there, Im so very sorry you are struggling. I have experienced brutal pain as well with no clear dx. I do know about a cushion though. They are called tush kush and they have a "U" shaped centre missing for the tailbone area and are soft and its can be carried anywhere. Worth a try. All the meds are no lasting help, I get it. There is a link on one of these chats to a physio therapist overseas"TOR" Trening Og rehab with some tips for this issue (as it sounds like youve been diagnosed) with 4 exercises and Nakktase and Serrapetase supplements some folks say helps. Take care for sure as it is just awful to cope with.

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Thank you so much

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@jefjr

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.

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While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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@rstollery I had recently shared this comment, and I'm resharing for you. I've spoken with my physical therapist about pundental nerve entrapment, and she said it is treatable with MFR and that insurance companies usually don't want to pay for physical therapy for this.

I wanted to share our Connect discussion about myofascial release. I do not have experience with pundental nerve issues, but I have done a lot of MFR myself, and it helps conditions of nerve entrapment by releasing the tight fascia that is binding everything together. Pundenetal nerve entrapment is on the list of conditions that MFR can help according to the founder of these therapy techniques, John Barnes. There is a provider search on the MFR website. https://myofascialrelease.com/find-a-therapist/

Here is our discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@rstollery

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?

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I would love to know also if anyone has ever tried the CBD ointment. Great idea! I was diagnosed a year ago with pudendal neuralgia after three years of tremendous pain and yes it is still here but medications are keeping me going even though the pain is constant. I had to fight tooth and nail and switch to multiple different doctor's to find my answer. I tried the oil drops and it was a waste for me also. I suppose the ointment maybe also but I would love to hear how it may work for someone else with PNE. I agree, I think we will be suffering for the rest of are lives unfortunately. I am not a fan having nerves burned and have heard horror stories about it and have also heard success stories. Look forward to seeing what you find out with the ointment. Good luck!

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Hello,
Sorry that you struggle with a very seemingly rare and debilitating situation, I understand completely. I have tried both CBD and THC creams external and internal applications with no relief. However, folks with other issues to include muscle tension and other pain have had success. I was able to secure a trusted source due to the delicate place of my pain to ensure it was safe. Had not reactions but no help. Best to you!

Liked by LeighO57

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@teg

Hello,
Sorry that you struggle with a very seemingly rare and debilitating situation, I understand completely. I have tried both CBD and THC creams external and internal applications with no relief. However, folks with other issues to include muscle tension and other pain have had success. I was able to secure a trusted source due to the delicate place of my pain to ensure it was safe. Had not reactions but no help. Best to you!

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Thanks for the info.

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