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Derek S. pudendal neuralgia

Discussion in 'Ask a TMS Therapist' started by Guest, Jun 21, 2016.

  1. Guest

    Guest Guest

    This question was submitted via our Ask a TMS Therapist program. To submit your question, click here.

    Question
    Does Pudendal Neuralgia have a TMS potential or possibility?
    That would be the nerves extending down over the sacrum
    and around there.
     
  2. Derek Sapico MFT

    Derek Sapico MFT TMS Therapist

    Answer
    Thanks for your question.

    A diagnosis of Pudendal Neuralgia absolutely has TMS potential. It is important to distinguish between Pudendal Neuralgia (PN) and Pudendal Nerve Entrapment (PNE). PNE is something that is clearly structural and can usually be diagnosed via imaging and/or electromyography. PN, on the other hand, is diagnosed clinically and usually refers to pelvic pain with no known nerve entrapment.

    It is my opinion that many cases of PN with no nerve entrapment are equivalent to TMS. My TMS colleagues and I have successfully treated many patients who were diagnosed with Pudendal Neuralgia and were able to reduce or eliminate their symptoms utilizing a TMS approach.

    I hope this helps. Best of luck!

    -Derek


    Any advice or information provided here does not and is not intended to be and should not be taken to constitute specific professional or psychological advice given to any group or individual. This general advice is provided with the guidance that any person who believes that they may be suffering from any medical, psychological, or mindbody condition should seek professional advice from a qualified, registered/licensed physician and/or psychotherapist who has the opportunity to meet with the patient, take a history, possibly examine the patient, review medical and/or mental health records, and provide specific advice and/or treatment based on their experience diagnosing and treating that condition or range of conditions. No general advice provided here should be taken to replace or in any way contradict advice provided by a qualified, registered/licensed physician and/or psychotherapist who has the opportunity to meet with the patient, take a history, possibly examine the patient, review medical and/or mental health records, and provide specific advice and/or treatment based on their experience diagnosing and treating that condition or range of conditions.

    The general advice and information provided in this format is for informational purposes only and cannot serve as a way to screen for, identify, or diagnose depression, anxiety, or other psychological conditions. If you feel you may be suffering from any of these conditions please contact a licensed mental health practitioner for an in-person consultation.

    Questions may be edited for brevity and/or readability.

     
    lizard likes this.
  3. Misha

    Misha Peer Supporter

    Just because something can be seen on MRI or other imaging studies does not mean it is the reason for pain. A herniated disk is 'clearly structural' too... Also, why would PN pain be an 'equivalent' to TMS and not just TMS?

    There are actually several cases of people being diagnosed with PN 'entrapment' who went onto recover completely with TMS work.

    @ezer Perhaps you could add an interesting perspective to this thread?

    There was a study done a little while ago (Ezer may have the reference or link) where they examined cadavers and discovered that the pudendal nerve being entrapped is just a normal finding in many people who never experienced pelvic pain, a normal abnormality as Dr. Sarno might say.

    Some people who are diagnosed with PNE had MRIs showing them to be entrapped on both sides - even though they only experienced pain on one side....

    http://www.tmswiki.org/forum/threads/pelvic-pain-healed.8680/ (Pelvic Pain - Healed)
     
    Last edited: Jul 9, 2016
    Jason32 and ezer like this.
  4. ezer

    ezer Well known member

    Derek, I disagree. I have been diagnosed by 5 pudendal experts with PNE (Pudendal Nerve Entrapment).
    I had the following tests that all "confirmed" pudendal entrapment:

    - PNMLT test (nerve conduction test)
    - 6 Nerve blocks
    - MRN (MR-Neurography)
    - 3T-MRI (High Res MRI)

    It was nonsense. I recovered treating it as TMS.

    In reality the PNMLT showed that the nerve conduction was slower because of the obturator muscle spasming. The nerve blocks make you numb no matter what. The MRN and 3T-MRI show inflammation of the pudendal nerve and assymetry of the muscles.

    Pudendal nerve decompression surgery has a shockingly low success rate. The success rate is in the placebo territory.
    Mayo and Stanford stopped doing PN surgery because it does not work. One of the top urologists at Kaiser does not believe PNE exists unless it is the result of a botched prior pelvic surgery or a bad accident.

    May I refer you to this study
    http://www.ncbi.nlm.nih.gov/pubmed/26070708 (Anatomic variations of pudendal nerve within pelvis and pudendal canal: clinical applications. - PubMed - NCBI)

    Anatomic variations of pudendal nerve within pelvis and pudendal canal: clinical applications.

    13 cadavers were examined. They were all found to have "classic PNE"... All the cadavers were entrapped. However, none of the cadavers suffered from pudendal pain while alive. Conclusion: PNE is a bogus diagnostic in most cases.
     
    Last edited: Jul 10, 2016
  5. Jason32

    Jason32 Peer Supporter

    PNE cannot be diagnosed via an imaging test- this is the opinion of most of the PNE surgeons (for example: http://www.pelvicpainrehab.com/pelvic-pain/1893/pne-your-questions-answered/ )
    The only way to verify if there is a problem with the nerve is to open a patient up and get a direct view in surgery.

    If there is PNE, it is nothing more than a trapped nerve. Dr. Sarno has said that a trapped nerve should primarily present with numbness, not pain (I'd probably add incontinence in addition to numbness for this particular nerve too) and if a patient presented with pain only (as the vast, vast majority of PNE patients do) it is likely to be TMS.

    The protocol treatment for PNE is supposed to be a series of three nerve blocks and surgery; however, there are very few studies demonstrating that surgery is successful and all of those studies have been conducted by the surgeons themselves, raising questions about conflicts of interest as well as statistical bias. There has never been a comprehensive review of the surgery by an independent third party. At least anecdotally, the success rate of PNE surgery seems to be incredibly low. Most PNE surgeons will not accept insurance and many insurance companies will not pay for treatment as it is considered experimental.

    Finally, as Ezer pointed out in his post, a study published last year caused quite a bit of controversy on the pudendal sites, in which 13 female cadavers with no history of pelvic pain all had an "entrapped" pudendal nerve, raising questions as to whether the surgeons are operating on something that is anatomically normal (or a "normal abnormality", as Dr. Sarno would say).
     
    GhostlyMarie, lina203 and ezer like this.
  6. ezer

    ezer Well known member

    Yes Jason, those famous statistics from surgeons... I had 2 pudendal nerve decompression surgeries.

    After the 1st one, the nurse called me monthly. Month after month I kept saying that I was doing terrible. One time, she asked me if there was something, anything that felt better. I was err. maybe my foot is a bit better (that was unrelated to my surgery).
    I never heard back from them. They claim 85% success rate.

    In the 2nd case, the surgeon was emailing me himself writing thinks like "come on, give me some good news this time!".

    What do you do? You don't want to burn bridges, you don't want to upset the surgeon that may "help" you again in the future. You tell him stuff like err. I am maybe slightly better.

    I communicated with 5 other patients that had surgery around the same period with the same surgeon. 5 failures. Yet that particular surgeon gives a 100% success rate on a peer reviewed publication.

    I am sure that it is how they get to ridiculous statistics like 85-100% success rate.
     
    Last edited: Jul 14, 2016
    MWsunin12, Anisha_d87 and Jason32 like this.
  7. Misha

    Misha Peer Supporter

    @Derek Sapico MFT I just want to make sure you have seen these comments and might take them into consideration should you encounter another 'PNE' patient in your practice. I would hate for someone who could potentially be healed with a TMS approach to spend a lifetime in pain unnecessarily.
     
    ezer likes this.
  8. Derek Sapico MFT

    Derek Sapico MFT TMS Therapist

    Thank you all for your input. I learn things every day from the TMS clients that I work with and I appreciate all of the information and resources that you provided in this thread.

    As a therapist, I find myself having to straddle medical and psychological explanations for symptoms. Sometimes I want to be more forceful in my mind-body declarations but I hedge because either the client isn't prepared to accept that explanation or I find myself straying outside of my scope of practice. Research and other individual TMS recovery stories are very powerful tools in solidifying my perspective and resolve.

    Your stories will be integrated into my practice indeed.

    -Derek
     
  9. TimmyH

    TimmyH Peer Supporter

    7gggggggggggg
    Toolingp

    I had pudendal neuralgia symptoms which lasted for 9 months. Got to the point where I couldn't sit at all and had electric shocks whenever I walked. Was soul destroying. Tried pain killers, physio, anti depressants and had a guided pudendal nerve block in the operating room. None of it helped. They thought I had some inflammation in my pelvis seen on the mri which was causing it. 3 months ago started treating it as tms using howard schubiners book among other things and the symptoms are 90 percent gone. I am now struggling with dry eyes and eye pain but am working on that. Can run, go to the gym, sit for any time. I have read a number of stories on this forum saying similar things about pudendal neuralgia.
     
    ezer likes this.
  10. Alex123

    Alex123 Newcomer

    Hello guy, I am suffering from pelvic pain/pudendal neuralgia for almost 4 years now. I also suffering from erectil dysfunction. I suspect a pinch nerve in l4 l5. However as everything started When I broke up with my ex girlfriend (littérally from one day to another like someone switch off thé light) tms could be the cause. My only doubt is that tms seems to be linked to pain and not dysfunction. Moreover the pain doesn t move its always at the same place. Finally in the forums about tms nobody mention erectil dysfunction. My question is...Can tms cause dysfunction and not just pain...is there someone who suffered from similar symptoms? Thanks for the reply
     
    c90danwaiel likes this.
  11. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I would suggest doing a '' SEARCH" here and at the TMS HELP forum using your key terms and you should likely come up with numerous citations, I know I've seen your issue mentioned numerous times.

    TMS exhibits itself in many other forms besides physical pain. There are also affective (emotional) TMS equivalents. Sexual dysfunction, like TMS, is 80 to 90% in the head.
     
  12. Chizzy

    Chizzy Peer Supporter

    I don't think the pain always has to move for it to be TMS. And even then, it sounds like the pain mostly moves to try and distract us in new ways when we figure out /believe our current pain is from TMS. As for pudendal neuralgia and pudendal nerve entrapment, this is just another form of TMS in my opinion. Please take everything the pudendal doctors say with a grain of salt, if you do your research on these doctors, you will find out they are shady.
     
    Last edited: Jul 9, 2017
    c90danwaiel likes this.
  13. c90danwaiel

    c90danwaiel Peer Supporter

    At one point in my TMS pelvic pain journey, I saw a urologist (who I later discovered had sanctions against him from the state medical board) who gave me a bizarre diagnosis of Peyronie's disease. I didn't and don't have that (another urologist confirmed that), but one of the side effects is ED. I started having some of the pain that can accompany Peyronie's and I started suffering moderate ED as well. So I'd say it can definitely be part of TMS.

    Was it in Sarno's books or maybe another book that discussed past psychosomatic conditions . . . I believe it was that in the 1700s, there were people who suffered from random limb paralysis. I agree that TMS can have forms that aren't pain - as long as they distract us. That can be paralysis, fatigue, and even ED.
     
    rusland likes this.
  14. rusland

    rusland New Member

    Btw anyone can tell me what's the TMS explanation of post ejaculatory pain ( burning) that last for a day after sex?
     
  15. Chizzy

    Chizzy Peer Supporter

    What I have learned about TMS is that you can pretty much create any pain and discomfort in your body. For instance, for me if my pain in the pelvis is a 10, sex completely takes my pain away because I'm not focused on the pain anymore. But, I have had times, when I've had so much fear of my pain transferring from my groin area to my penis that I could actually feel my penis start to sting and tingle. I immediately remind myself that there is nothing wrong with my penis and the pain goes away.
     
    c90danwaiel likes this.
  16. c90danwaiel

    c90danwaiel Peer Supporter

    Conditioning could play a role as well. If you think ejaculation brings it on, your TMS pain could be conditioned to occur after ejaculation. Same goes with sitting, bowel movements, etc.

    I actually had the same post-ejaculatory burning pain early on with my TMS, but then a few times it didn't occur and so that response never became firmly established for me.
     
  17. Chizzy

    Chizzy Peer Supporter

    Nerves are trapped all over our body. I definitely don't recommend telling someone a Trappef nerve is causing pain. Obviously this happens, but it's not that typical. Because like I said, nerves are trapped all over our body, everything is compressed.
     
  18. Jax92

    Jax92 New Member

    I don’t have ED or genital pain but I do have genital numbness and less size, indicating a lack of blood flow.
    Anybody with tms experience this symptom?
    It’s known in a smaller pelvic floor community as “hard flaccid”.
     
  19. TimmyH

    TimmyH Peer Supporter

    Jax I did use to get numbness in my groin area. Use to have trouble ejaculating. Had a lot of zapping pain during sex. Best advice I can give you is to not focus on it. Your attention on the symptoms always makes it worse. Especially for men sex is something we value and the slightest thought that something is wrong with our anatomy causes a psychological cascade of events that leads to exacerbation of symptoms. Ignore the symptoms like crazy, dont care if they are There and when they get worse just know that you are closer to beating this, laugh at them. Your belief that you are strong and healthy is what beats TMS. Not easy. Pudendal nerve entrapment is extremely rare. Especially in men. Most cases are in women who have had pelvic surgery. There is no reason for you to have it. Tight pelvic floor is basically stress and not enough to cause nerve entrapment. It's 99percent of the time Tms. Try and find an example recently when your symptoms were better. If your nerve was compressed you wouldn't get good days.
    Take care mate
     
    Jax92 and Tennis Tom like this.
  20. Jax92

    Jax92 New Member

    Awesome man. Thanks.
    I never did buy into the nerve entrapment theory.
    I was more so treating it as a muscular issue for a few years until I spoke with a few people who got better and attributed it to being more psychosomatic.
    It’s always reassuring to hear someone getting better with tms from this issue. The numbness, especially in that area is much rarer than say, back pain, or even groin pain.

    I’ve been having more luck doing it the way you described the past few days. I’m doing Alan’s new program.

    Love hearing about people getting better from this though.

    Thanks
     

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