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Pudendal nerve/chronic pelvic pain: 25 year old sufferer for a year and a half

Discussion in 'Support Subforum' started by Vouthon, Jun 22, 2017.

  1. c90danwaiel

    c90danwaiel Peer Supporter

    Hi rusland,

    Glad to hear you're improving. I wouldn't worry about the pain not moving. I had some other TMS pain issues that went away without moving (in my case, tendonitis in my foot), and it doesn't move for everyone. The trick is just building up your evidence sheet of things that point to your pain being TMS.
     
  2. Steve Ozanich

    Steve Ozanich TMS Consultant

    CPPS and pudendal pains are common manifestations of TMS, they're everywhere and the successes posted. Just keep on digging until you find your truth.
     
    tshepherd121, Time2be, adyxon and 2 others like this.
  3. Vouthon

    Vouthon Peer Supporter

    This was a very helpful post, thank you! I will take your advice on board.

    I had a few "off" days there in which I had quite bad pelvic pain and the concomitant psychological repercussions, but today I was feeling a lot better - pardoning a few episodes.

    Sitting has not caused any noticeable pain today, even though I've sat for a good while - longer than I have in two whole years. I have experienced some of those 'jolt-like' rectal spasms but at times not related at all to sitting, which I can apparently do for extended periods without the onset of any pain at all. I'm sitting right now as I write this post (as opposed to lying on my back) and I've felt fine doing so.

    Moreover, ejaculation - which has been a very troubling bodily function for me, resulting in a significant spike in the symptoms - was completely normal the last time I did it. Just prior to this, I'd still been experiencing a great deal of pain during or following an ejaculation but on this particular and most recent occasion, I didn't have any pain and could orgasm as I used to before the CPPS/PN. This gets me thinking: if my problem were structural, or wholly structural, why would the sexual dysfunction (which has been a prevailing occurrence right through for me) inexplicably change for the better in a short space of time - indeed a short space of time in which I'd been conquering my fear of sitting, the act that is supposed to give one "irreversible nerve damage"? One day, I feel severe ejaculatory pain and no orgasm. The next, I'm basically A-OK in that respect and can orgasm. I have committed two "PN" mortal sins by 'sitting' for elongated periods of time and ejaculating, two acts thought to irritate or further damage the nerve.

    You see the last few days - despite the pain I've been experiencing - I have repeatedly said these words to myself: "I would rather feel the pain right now, than live in fear of the pain by continuing to treat it as structural". It is this mantra which has enabled me to sit without pain and indeed ejaculate without pain or discomfort, for the first time in ages.

    I will be sure to let everyone know how I get on in the future. Thank you everyone for your contributions to this thread, you have all been a great source of encouragement. I am fully aware that I will continue to experience pain in the forseeable future, or rather undergo relapses, in which I'll probably feel doubt and give way to grief, but I will keep pushing onwards with my new mindset.

    I also felt a slight bit of "symptom movement" again today. When I felt a slight twinge in my rectum - and would normally have thought, "oh no, its starting again" - this time I repeated my mantra and I felt a twinge of sharp pain in one of my toes, followed by sharp jolts in my lower back. I had felt the lower back "jolts" earlier in the week.
     
    Last edited: Jul 11, 2017
    c90danwaiel likes this.
  4. Time2be

    Time2be Well known member

    Hi, I am new here. I also have Chronic Pelvic Pain syndrome. And I have it for a long time, now almost 20 years. The funny thing is that the first 15 years I was convinced that it all was psychosomatic/MBS. And I did psychotherapy for 7 years. So, I thought I must have found out what causes this pain, which can be almost unbearable. Since 4 years I am having again periods with more pain. I also had new diagnostic procedures and found a very good urologist who is very much into psychosomatics. She tells me that there is basically nothing wrong with me, just tight muscles due to dysfunctional coping with my emotions, especially anxiety. So, I really do relate to all you you, who also have chronic pelvic pain, and yes, it's seems to be very stubborn. After a period of 7 months with no pain, I again have pain, now the third weeke with pain starts. And I am bit at my wits end ...
    My main problems are right now: what have I overseen? Could there still be anger, rage, guilt or shame that I haven't worked through? And how to become outcome independent? Despite the fact that I have such a long experience with the pain and the fact that it can disappear, when I am doing fine, I still struggle and get anxious.
    Are there others who have the same experience?
    Greetings from Denmark!!
     
    Vouthon likes this.
  5. Vouthon

    Vouthon Peer Supporter

    Dear Time,

    Thank you for your contribution to my thread, I am so sorry to hear that you have suffered with CPPS for such a long time and to an unbearable level at times. I relate entirely to what you are going through, of course.

    As you know, I am still very new to the TMS - less than a month in - so my knowledge and experience is naturally lacking compared with others. That said, I am already getting the strong impression that while identifying and expressing emotional distress is very important, and a notably useful means of doing so being to pen ones thoughts in a journal, the "outcome independence" is more important.

    I think it is only by accepting the pain and doing the activities one fears, wholly understandably due to apprehension about further structural damage, that improvement can probably be found. I don't know this for sure, given that I am still suffering from CPPS/PN....

    But you admit in your post that at even at "good times," when the pain is absent or much reduced, "I still struggle and get anxious". Perhaps this then is the crux: the pain cycle is continually fed by fixation with the pain and fear as to when it is next going to arise, which leads to avoiding activities that might facilitate its return.

    I know, for one, that I do this exact thing. When the pain comes, I think on it even after it has gone: I "grade" the pain, innately, thinking: "oh, I did such-and-such today and the pain was at this level, whereas yesterday..." And I get anxious, worrying when it will return, because in truth - I'm afraid of the pain.

    And so even when the pain is absent, the effect of it is still there for me: fear and anxiety.

    In the past, I allowed that fear and anxiety to prevent me from leading a normal life. I am trying now to do the opposite. It's hard. My progress is slow, I had a good day yesterday and a less good one today, but I feel that I am getting somewhere. For instance, sitting and ejaculation pain has been a big issue for me...but it isn't so much now. Whereas before, I worried before sitting down or prior to ejaculation and consequently seemed to condition myself to have pain by forensically monitoring myself during the act rather than just "doing it" and not expecting pain - now I just do it, uttering the following phrase: "I would rather do [X] activity and have pain, than not do [X] activity but live in fear of the pain".

    Or rather: "I would rather that I do this activity and feel pain, if that's the way it's got to be, than not do it and live in fear of the pain. I will do this activity no matter what the outcome, nor will I think about it afterwards irrespective of the outcome, and I won't judge it by its outcome. I will just do it because I want to sit/walk/run/swim etc".

    And on the most recent occasions, I haven't suffered pain while doing so. That doesn't mean I won't in future, but it does help convince me that psychology has a huge role to play here. Instead, my pain seems to be correlated more these days after brisk walks and for no apparent reason, I have yet to become "outcome independent", to use the term, with other activities. But I think I'm getting there and I hope so very badly that you find some much needed and deserved improvement in your symptoms. In addition to this, I still journal and reflect on my emotional state.

    If it were structural, or wholly structural, I wouldn't think the pain could be OK doing x activity one day but not another day. Structure is structure and if something is damaged, and an activity brings it on, then it should happen every time. In that respect, being free of pain for 7 months is certainly significant. I was free of pain last year for three months. At the time, I initially attributed it to talking an antibiotic for just 3 days that damaged my legs (temporarily). In hindsight, I now know what I didn't know then: I never had prostatitis (this was before the CPPS or PN diagnoses) and I didn't take the tablet anywhere near long enough for it to have helped me. 3 days is laughably short when the prescription was meant to be taken for months. I stopped getting the pain because my mental focus had shifted entirely onto my legs. When the legs recovered, the pelvic pain ultimately returned with vengeance.

    I keep thinking, there was a poster on here - I believe his username was Ezer - who had two operations in his pelvis to correct alleged pudendal nerve entrapment (which has, following a 2015 peer-reviewed paper, effectively been quashed as a viable etiology for causing PN given that it was found in numerous cadavers of people who had never suffered from pelvic pain in life), and had been in an actual accident with perceived trauma as the trigger of his illness: and yet he still managed to come through this by means of treating it as TMS. I had no physical trauma prior to coming down with this condition, all I had was extensive emotional distress at the time and constipation (which has been resolved).

    I can't say I really buy the idea that something like this, to this magnitude, "just happens" structurally out-of-the-blue or as a consequence of something minor like being seated for too long (if that were the case then surely every elderly, housebound, disabled person or late-night office worker should have CPPS/PN but they don't. Why then in young or middle aged and otherwise perfectly healthy individuals who have undergone no or little physical trauma?). So, I have to believe that there's something in this TMS and outcome independence .

    If Ezer and others can do it, I feel and hope that we can too.
     
    Last edited: Jul 16, 2017
  6. adyxon

    adyxon Peer Supporter

    "

    You must be willing to go this path 100%. Be careful of spending too much time investigating and anzlyzing TMS on the help websites.
    You can get some info but then you need to turn to yourself and begin applying. I see many people get stuck on this help websites
    learning and talking about TMS but not changing what the cause is! Make sense?


    Monte Hueftle
    TMS Mind Body Coach

    "

    Internet can be very toxic, as Monte said.
    Reading a post like the one above can be very harmful for those who want to get better.
    The next step will be to ban my self from every forum and work on TMS not just obsessively reading the same posts over in over again.
    I think this is the goal!
     
    Time2be and Vouthon like this.
  7. CarboNeVo

    CarboNeVo Well known member

    yes, the forums can become another source of obsession.
    The outcome independence is the key to beat this but it takes a huge effort to be really independent of the pain levels.. because when the pain strikes.. you feel like you are no more in control of your mind as all your negative thoughts start to pop up and you return to analyzing, monitoring the pain and feel helpless... by that you've given the primitive brain what it wants.. fear and preoccupation.
    Watch alan gordons new program guys.. he's addressing this behavior this time and focusing it pretty much on the FEAR.
    Balto says it, no fear no pain.. but becoming really indifferent to the pain is a longer process
     
    Last edited: Jul 17, 2017
    Vouthon likes this.
  8. Time2be

    Time2be Well known member

    So true! Help sides can become an obsession. I like the comment of Vouthon though, because he stresses Vance of outcome independence. And thanks CarboNeVo for the hint to Alan Gordon's new program. I'll check this out. It is true, no fear no pain. Every time I really got angry about all the stupid diet and other treatments I got better. It seems like I do much better when I have something to achieve in the future, when I am really in flow with what I am doing and also when I have a bit of a aggressive attitude towards some of the problems at work or with family and friends.
    Thanks for the helpful comments!
     
  9. Time2be

    Time2be Well known member

    By the way, there was a misunderstanding: I am not anxious when I am doing fine. Then I am 120% convinced that it is a manifestation of MBS/TMS. Just when the pain comes, I start to doubt, more emotionally than rationally.
     
    Vouthon likes this.
  10. Vouthon

    Vouthon Peer Supporter

    I'm in the same boat. I had the pain today, very annoying in the anal area.

    Like you, I had a period in the past - last year - when the pain vanished, in my case for around 3 months. I was pelvic pain-free as I mentioned earlier. Unfortunately, I had also taken a powerful antibiotic that nearly crippled my legs, such that I found it difficult to walk.

    I had, at the time, thought it was this drug which temporarily got rid of my pain.

    But I think now that that is impossible, rather my attention was wholly focused upon my damaged legs, such that for that period the PN/CPPS pain served no function as a distraction mechanism. And I remember that even after this, every time the leg problems would recur, the PN/CPPS would temporarily fade again.

    I keep reminding myself of this. A year ago, after suffering the pain for months, I was pain-free for months. Keep that fact in mind for yourself too - 7 months pain-free.

    We both have the benefit of knowing, no matter how bad our pain levels get on a given day, that we've had a months-long reprieve in the past. Purely structural explanations cannot account for that.
     
    Last edited: Jul 18, 2017
  11. Time2be

    Time2be Well known member

    I am so sorry, Vouthon, that you have this problem with the leg. I never heard before that antibiotics can do this. You are right, it is important to remember that the pain disappears again - "this shall also pass"! I am doing better now since two days. Thinking psychological and not physical seems to work. By the way, I try not to go there, where I argue rationally that a purely structural disease cannot come and go like this. For me this is already the start of a slippery slope. I have a clear diagnosis that it is TMS though my urologist uses a different terminology. But basically the same, psychosomatic, mind-body-syndrom ....
    Have you ever thought of consulting a psychotherapist? You say that you suffered or suffer from social anxiety. Psychotherapy might be a good idea to get to the root of all this? It is of course important that you find one familiar with TMS or the idea of psychosomatic disorders. I am seeing a psychotherapist every second month for one hour. I started with her during my divorce and I she is really helpful. This is not in depth psychoanalysis but more direct intervention and I really learn a lot!
    As I already said, my urologist just tells me "go and get a life!" - not so wrong. Because pain can become an excuse not to take up with the challenges life brings. In my case I never missed work, so this challenge I take. But to have a private and social life is not so easy for me - also because my work is time consuming.
     
    Vouthon likes this.
  12. JD1

    JD1 New Member

    Vouthon:

    I healed myself of pelvic pain/Interstitial Cystitis using TMS healing methods (I saw Dr. Stracks in Chicago and worked with a TMS therapist for over a year). Just stay on track and you will be pain free (mostly - don't ever think you will be 100%, it doesn't work that way). My recovery took nearly two years; stay the course (and consider a tms therapist)!
     
    Vouthon likes this.
  13. Vouthon

    Vouthon Peer Supporter

    Oh no, my legs are completely healed now but that was my point: once my legs recovered (I had an allergic reaction that caused tendon damage, sadly its a possible and shockingly common serious side effect of taking a fluoroquinolone antibiotic), the pelvic pain returned very badly.

    I think you are very fortunate to have found such an open-minded and understanding urologist. They are hardly a dime a dozen (readily available).

    I have indeed and agree with you that it would be a worthwhile idea in my case. Certainly, I have a lot of hitherto unresolved anxiety issues.

    That's an excellent point "pain can become an excuse not to take up with the challenges life brings".
     
  14. Vouthon

    Vouthon Peer Supporter

    Hi JD1,

    It's reassuring to hear of another person who has found healing through TMS treatment.

    I'm definitely prepared to stay the course and I don't expect any quick returns. I would like to find a TMS therapist.

    Many thanks!
     
    Last edited: Jul 19, 2017
  15. Vouthon

    Vouthon Peer Supporter

    Just bumping this thread to let folks know that after a few relapses, I've had three days thus far without the pelvic pain at all and my ejaculatory dysfunction has vanished over the last week, with no pain during or after orgasm. My "junk" feels absolutely normal at the moment where this side of things is concerned, which is the first that I've been able to say that in a long time.

    As indicated already, taking the last month as a whole I've experienced "relapses" and I had a really difficult time initially - but I do feel better at the moment and it sure is a blessing to have had three really good, pelvic-pain-free days. I feel relieved, like I've had a reprieve after so many months of pain. I can actually remember what it felt like to be me before this pain became a constant feature of my life. Come what may, this has been wonderful to feel again.

    I don't want to "jinx" myself but things do seem to be getting better slowly but surely :)

    If I can be free of pain for three whole days and ejaculate normally as I did this week, then I can in theory be that way for extended periods of time as well imho.

    Oddly enough, my focus has shifted to intense ITCHING in different regions of my body - scalp, under-arms, nether regions etc. - that I've felt before but which has become a lot more severe and widespread recently. I've been trying to treat it, unsuccessfully so far, with a variety of topical creams and a special medicated shampoo for my hair. It was so bad that it kept me up for an entire night two days ago but I felt no pelvic pain throughout, being completely fixated with the itchy feeling. I'm now wondering if this is the TMS manifesting with a different sensation, although I haven't heard people mentioning "itches" as of yet.
     
    Last edited: Aug 6, 2017
    c90danwaiel likes this.
  16. Ewok

    Ewok Peer Supporter

    That's amazing news! Well done! If you can go three days, that proves there is nothing wrong! Relapses seem to be pretty normal along the way to full recovery. Tell us what worked for you and how you made progress.
     
    Vouthon likes this.
  17. Vouthon

    Vouthon Peer Supporter


    Thank you Ewok!

    If I may ask first - how are you getting on? I really hope that you've seen a significant improvement!

    In terms of what has worked for me: a change in mindset firstly. I no longer fear the pain coming on and I'm less preoccupied with it. I found it very difficult at first to arrive at this state of mind.

    But over a few weeks of telling myself the pain was not structural, that I wasn't harming myself by sitting or doing other normal activities that I'd been terrified to do and the pain was simply a distraction from my emotions; a case of my brain misreading these emotions as something dangerous that it had to warn me about, just like a physical injury but without one in fact...eventually something just seemed "click", to get better this week.

    I think once the understanding sets in that pain signals are not necessarily due to structural damage but can be triggered by emotions which your subconscious deems to be harmful, once you can get this to really sink in and start telling yourself its OK to feel these negative emotions - rage, shame, fears - whatever they may be and that you can take it, that you don't need "protected" from or warned about them because they are not in fact dangerous, once I'd reminded myself of this every time I had pain...I just started to not feel pain three days ago.

    It's hard to explain but I've been feeling my emotions, like really feeling them, not shying away from negative emotions. And anytime I felt the pain, I would relax and tell myself: "no need to be afraid, its not structural". Sometimes, I would rub my lower stomach - like a gentle massage - to calm myself down and the pain would pass. Once it had passed, I wouldn't keep thinking about it as I used to.

    When the pain comes now, I don't "rate" it afterwards like I used to: "That was a 9/10, that was worse than yesterday".

    I've ceased all such preoccupation. Any time I feel the pain now when doing an activity, I remind myself that its just conditioned by my mind associating pain with said activity, rather than coming from anything structural.

    And for three consecutive days at least, I've had no pain. Only a tiny niggle at one point today that was barely discernible, nothing yesterday at all.

    So something seems to be working. It's still early days (given that others have taken years to feel better) but the last three days have been truly enlightening and encouraging for me. A breakthrough, perhaps.
     
    Last edited: Aug 6, 2017
    c90danwaiel likes this.
  18. Ewok

    Ewok Peer Supporter

    It's so kind of you to ask how I'm doing :) I don't seem to have made the progress that you have but your story gives me so much hope and I am so happy for you. I find my pelvic pain is complicated by being female and there being so many female issues that can be at play in this area and I just can't seem to gain confidence. But I will keep persisting! I hope you have had a good week :)
     
  19. Labi mahmuti

    Labi mahmuti Newcomer

    Hey,

    I had similar symptoms. Only if I found this earlier. Mine started in 2017 with a small infection. Long story short, I had a mental break down. However, I believe I had pelvic pain for a few years before my penis pain started. I always had a burning anus and I would feel sharp pain like needles in that area. I ofcourse ignored it. After one night I woke up with this stabbing pain in my urethra. It felt like a knife was constantly stabbing my urethra. Ofcourse I thought I had an STI and went through intensive testing and antibiotics but nothing helped. My penis looked fine it was just shrunken up. At this point I had a burning anus and urethra burning stabbing pain non stop day and night at a scale of 10 for about 7 months. I couldn't sleep eat. No one could help me. Doctors, specialist and medication did not help. It's been now 2 years and the nerve pain is 90 percent healed. However I still get pain as you describe. It's weird cause the flare up feel different all the time. Sometimes it burns deep in my urethra. Other times the tip of my penis skin feels tight, irritated. I feel like when in laying in bed its 100 percent better. Sitting is bad for me. I read this post by this guy who said to see how bad your nerve is pressed take a q tip and put it in your belly button and twist it. You will feel the tip of your penis If you have a compressed nerve. I believe for me that the cause of this is due to my spine. I have slipped and bulging disk on l5 s1.

    Anyways let me get to what you can do that will help. Buy a book headache in the pelvic (Amazon). Its a great book shows you specific stretches and wand procedures you can do. I'll let you read about the wand stuff HAHA.
    DO hot yoga and stretches.
    Drink lots of tea and take hot baths.
    Buy probiatocs and take your vitamins.
    Try to find physio for pelvic floor muscles.
    Most of all time heals all. Be strong and remember nothing last forever. I had pain for almost 2 years. I couldn't stop thinking about the pain day in day out. I would pass out from my brain being exhausted of the pain. So please be strong. It will pass. I can't say my pain is worse than yours but if I can get passed it so can you.


    Let me know if you have any questions.
     
  20. balancedanswers

    balancedanswers Newcomer

    "extreme fear sparked by a false positive on a routine STD test" - same thing happened to me. Just adding this. Still working on MBS techniques. Was stuck on headache in the pelvis for a while and physical issues.
     

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