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Prostatitis / pelvic pain

Discussion in 'Support Subforum' started by johnnyblotter, Apr 10, 2016.

  1. johnnyblotter

    johnnyblotter New Member

    Hi everyone,

    I've been struggling for a year and half with pelvic pain, which might be called levator ani syndrome or perhaps pudendal nerve neuralgia / entrapment. I have tried many things to become pain free but no matter what I do, I can't seem to reduce my symptoms - they seem to have a life of their own. I suffer with tension, tingling, and what feels like a foreign presence that moves between the perineum and back of the rectum. It is debilitating and frustrating.

    I have a very long medical history which includes 3 urethral stricture operations, at age 12, 14, and 23, a paralyzed wrist for 6 months due to a fall, bipolar disorder resulting in 5 years of intermittent, involuntary pscyh hospitalizations, and an L5-S1 discectomy and an inguinal hernia operation at age 36. I also had something called hyperacusis for 2 years after having a punctured ear drum.

    Prior to this "non bacterial prostatitis" as they call it, I had two other symptoms - a tight, uncomfortable feeling in my upper chest/left shoulder, and a hellish two week period of interstitial cystitis where I was urinating 15 times a day.

    I have been to a proctologist and was told it isn't hemmorhoids. A gastroenterologist who I actually like said "Western medicine doesn't have good answers". I was scheduled for a CT scan but at the last minute decided it was a waste of time and money. Initially I thought maybe my hernia mesh was somehow involved.

    I have delved into the TMS area once again, and just finished the Mind-Body Connection. My pelvic floor therapist also suggested I explore this area (though it certainly contradicts the work I'm doing with her).

    There's no doubt I have a lot of anger, especially about my dad, an M.D who doesn't think very much of the hell i went through with the urethral stricture operations as a kid and the resulting terrible time I had trying to deal with that in puberty.

    I understand accepting the diagnosis is key. Perhaps the bit I struggle with is the electric sensations I get in the pelvis, thinking the pudendal nerve has been entrapped or irritated along with a muscle spasm. I worry that I did it to myself during masturbation. I felt something "glitch" back there. Perhaps it's the same thing as the "snapping" feeling I had in my back that precipitated my back surgery.

    I'm just working through this and I appreciate anyone who reads and offers feedback. Thanks.
    Jason32 likes this.
  2. Huckleberry

    Huckleberry Well known member

  3. johnnyblotter

    johnnyblotter New Member

    I've read it. It is interesting and I've done a lot of meditation as a result.
  4. browndogisinthehouse

    browndogisinthehouse Peer Supporter

    You may also be interested in the Stanford protocol and the book the headache on the pelvis. I have had chronic pelvic pain. I was bedridden for a few years. I'm still not sure how it reduced but one of the Ayurvedic treatments seem to have helped. Now I'm struggling with the neck pain.

    Both TMS and the Stanford protocol overlap. I would probably continue with both until the pain is under control and that focus more on TMS

    The diagnosis of pudendal neuralgia is not useful at all because it essentially says that nothing can be done except putting up pain pump in the spinal cord. I don't say that it is a bad option if the pain is at the point where you can barely do anything on your own. But as I have experienced, there are many other things to try before going for that diagnosis.
  5. Jason32

    Jason32 Peer Supporter

    I totally understand what you're going through. I had PN symptoms for a year and a half after a fall. I also had tinnitus/hyperacusis beforehand too, which isn't a coincidence- this is all stuff your brain should be tuning out, but isn't. The microphone is too sensitive, so to speak. It took me a very long time to get better, mostly because I had lingering doubts as to the structural aspect of it. You just need to take the leap of faith. Were you very stressed before this started? The two years before that fall were some of the most stressful of my life. PN/PNE is a fad diagnosis IMHO- everything is the "pudendal nerve" now despite the fact that a 2015 study showed that all of us are probably walking around with "entrapped" pudendal nerves anyway! http://www.ncbi.nlm.nih.gov/pubmed/26070708 (Anatomic variations of pudendal nerve within pelvis and pudendal canal: clinical applications. - PubMed - NCBI)

    Here's some more links that helped me a lot:

    https://www.painscience.com/articles/pain-is-weird.php (Pain is Weird)

    https://www.painscience.com/articles/structuralism.php (Your Back Is Not Out of Alignment)

  6. Anisha_d87

    Anisha_d87 Peer Supporter

    Hi jason
    Hope you dont mind me asking,what did you do to assist with your healing?
    did you work on past emotions or just get on with life taking into account your emotions?
    Did it take long for you to heal?
  7. Jason32

    Jason32 Peer Supporter

    Took a very long time to heal and even now I still get flare ups, but I can go days, weeks, even months without symptoms. I'm very much improved from before. The key is to recognize what I posted in the links above- get out of the structural damage model of thinking and understand that the brain decides whether you feel pain... or no pain. By focusing, worrying, obsessing over and "checking" symptoms all you're doing is reinforcing the pain pathways and getting the brain to turn up the microphone on it. Pain is a very poor indicator of actual tissue damage. I was told so many different and mostly nonsensical stories about what was wrong- misaligned tailbone, fractured tailbone, tilted pelvis, pelvic floor dysfunction... the list goes on and on. "Normal abnormalities", as Sarno used to say. No two Doctors or physical therapists could even agree on the diagnosis. I had an orthopedic surgeon tell me there's so much variation in pelvic anatomy (particularly the tailbone) that it can be difficult to tell what is even "normal" or not.

    I found it important to accept things that happened in the past and recognize that I'm still angry over a lot of things that happened. You tend to forget about it when you're dealing with chronic health problems, but I think its important to accept that as an indirect contributor to how you got in this position, then move on. Prior anxiety and depression is strongly correlated to developing chronic pain later in life (research backs this up as well)- you're wired up to start a chronic pain problem when many people would not. Best to focus on what you're doing currently and relax.

    I would also recommend you look up Ezer's posts on here as he had the same condition I did and recovered completely.
    Anisha_d87 likes this.
  8. Anisha_d87

    Anisha_d87 Peer Supporter

    Hi @Jason32
    Thanks for you response!
    Ive had many of the above been told to me also regarding the diagnosis ie: twisted pelvis , sacroilliac joint .
    ezers posts ive read many times, reading his posts give me much hope. And so have yours.
    Ive been off work for 5 months due to sitting pain and during these months the pain had dececreased, most days id feel no pain. However i was not sitting down on chairs as much.
    Now that im back at work the pain has come back and changed a little. Its more painful.
    I understand that pain is a barometer for how safe we feel. I never really enjoyed my job prior . Funnily the pain started at a time i was really enjoying work and started whilst at work so i get that my brain is conditioned and needs deconditioning.
    Did you make any work adjustments ?or sit through the pain?i dont want to pressure myself to push through it, but i dont want to condition myself any further.
    Thanks for your reply xx
  9. Jason32

    Jason32 Peer Supporter

    I just sat through it at work. In fact, that's where my flare ups nowdays usually occur. It's also what tipped me off to something not being right- I could do all sorts of strenuous activities (that I like doing) in the garden or home improvement projects and had no pain, yet sitting in an office chair is so painful? I'd always come up with some ridiculous way to explain it. And you know the pudendal nerve is probably being stretched in every possible direction when I'm out in the yard...

    Or when I'd lay down to sleep I'd get bladder/ genital pains and urinary urgency, yet when I'd wake up it would be gone. If it was actually related to position or pressure it should've been excruciating when I woke up. Inconsistencies like that are what I noticed.

    I wasn't particularly stressed when I fell either. The years leading up to it were some of the most stressful of my life though. I had actually just gotten out of therapy...
    Anisha_d87 likes this.
  10. Anisha_d87

    Anisha_d87 Peer Supporter

    I understand what you're saying,
    The few years following up to the pain were stressfull for myself also.
    I dont have any pain laying down, sleeping, walking . Etc
    I noticed i get pain after exercising and during sitting
    It's usually in one spot also, feel very muscular.
    However these symptoms have changed alot in the last few months from right side to left, sometimes external then internal. All since ive been doing mind body work.
    I try not to monitor the symptoms but of course its human nature to just notice
    When random pain started appearing in my foot and arm i knew it was tms
  11. adyxon

    adyxon Peer Supporter

    I am very determined ! From today on ( for a year) I will go out for walk in the park ( or gym ) for one our ( even my brain is telling me that I will be in pain and need to stop for pee ! )
    But I don't care .
    From January until now I was believing on Tms but did nothing properly...... just spending hour every morning on internet.

    I was in holiday in Crete for 12 days and my pain was minimal ( i had just anxiety and mild burning pain after urination ) but mentally very good.
    I am out of any medications for 3 weeks and finally can sleep! But still struggling with depression when in pain . From last Monday I am doing Alan Gordon new program and Monte Huefle" think clear " approach. But I feel I need to walk every day to bild a routine.
    Let's do it !
    Last edited: Jul 29, 2017
  12. johnnyblotter

    johnnyblotter New Member

    I get better gradually over time. I'm three years in and having spent significant time working mindfully through different ideas, I don't really believe in TMS as it's presented. I think the nature of the damage is at its core structural. Does this mean you can't work on your brain amplifying or muting the signals? No. You can work on it, and I spend a lot of time doing so.

    There's always the example of, when I did "A" I was in pain but when I did "B" I was fine. The explanation for that phenomenon (and this is all just my own personal theory) is that activity "B" is more engaging or distracting. For example, when I play drums, I don't notice the pain at all. That's because my brain is preoccupied with the processing needed to play the drums and therefore can't process the pain as well. However if I'm just walking down the street, that distraction isn't there so I'll experience pain.

    For activities that aren't as interesting or engaging, it's easier for the pain to win. The brain isn't sufficiently engaged in whatever it is you are doing. For example if you have no pain while gardening but pain while in your office chair, I'd say that's because gardening is more enjoyable and distracting.

    All the ideas about thinking psychologically help to the extent that feeling better about personal relationships or emotional events improves your overall health and well being and that can have positive effects on your pain. But the "magical" part about always thinking psychologically - I went very far down that road, hired a therapist, and had a few definite "oh my god it clicked" moments but those were, at the end of the day, placebo.

    I experienced a nasty spasm..I felt it when it happened, the muscle just glitched and zipped together and jammed in an awkward place. Do I feel no pain right when I wake up? Sometimes it's less, but that's not TMS, that's just that my brain is very foggy right upon waking up so I don't really feel much at all for a minute. But the pain's there, that annoying sensation is just sitting there (sometimes less, sometimes more) when I wake up.

    I attempt to battle it by doing as many things as I enjoy doing and having days that are as busy as possible. In this way I find myself tired and when I spend my days as engaged and as vigorously as possible I find things work out much better. A lot of the time it's frustrating. Perhaps once a week I take an afternoon off due to fatigue, but otherwise I'm probably at about 75% of the activity level I'd like to be at.

    My methods of fighting it are a ton of walks, relaxation, a lot of water, and exercises at home to increase blood flow and circulation. When I'm not doing that I do my level best to ignore it.

    Ignoring the pain, yelling at it, telling yourself it's not dangerous, these are all good ideas to help remain calm, which, in time, helps the area to heal (I hope!). But this notion that my brain is doing all of it, to me doesn't ring true. I felt the stupid muscle when it did a huge spasm and it's been stuck in the same area for three years.

    I also think anyone who says they have "the answer" and are professionals who charge money in this regard should be viewed with caution. I've spend 10-15k fighting this (P.T, therapists from this site, doctors, yoga classes, etc) and it's only my own personal routine which helps at all.

    I was told by a therapist to "look at all the success stories on this site". Hahah really? You mean the very small handful? I felt it was a lot of smoke blown.

    I hope this doesn't come off as overly negative, but it's just my perception of this (amazingly annoying) problem.
    Jason32 likes this.
  13. Jason32

    Jason32 Peer Supporter

    I actually agree with a lot of your post. My opinions on this aren't really the same as when I posted in this thread a year ago. Having spent three years on this just like you and still struggling, I've come to the conclusion that it's at least partially structural. They say to write an evidence sheet that its TMS- well, there's evidence it's TMS and there's a lot of evidence it's structural too, and especially with this condition, there's no real way to know 100%. Even the diagnoses themselves are unproven and controversial.

    Having said that, there's no real evidence any treatment works, be it pelvic PT, surgery, drugs etc. Those of us with this problem are basically left to manage it ourselves or take a gamble on risky, unproven treatments, which I prefer not to do. So I agree with you on self care, which is mostly what I'm doing.

    It's not talked about a lot (because there's no money in saying this) but a lot of chronic pain just resolves by itself after many years, with no explanation. It's happened to me with other symptoms and I've seen it with several family members too. My brother, for example, had CPPS for over five years, tried all sorts of antibiotics, procedures, etc. and it spontaneously resolved (when he wasn't seeking treatments). My mom had what I now realize was PN symptoms and she had an injury like me when she was young as well (before I was born). She has no symptoms now either (again, she did nothing when it resolved). So you have to wonder if some of this is biological predisposition towards chronic pain like Dr. Clauw says in the video above.

    Best line from your post, which I will requote because it's very good:

    There are a lot of people out there trying to swindle pelvic pain patients, so beware.
    Last edited: Jul 29, 2017
  14. johnnyblotter

    johnnyblotter New Member

    Agreed. I've had quite a few people make absurdly optimistic claims about their ability to solve this problem, from therapists tied to this site to P.T.s. I was told by one P.T. "this is an easy case". She's going straight to hell. It just actually made things a lot worse emotionally to be given some hope like that when it was really that the lady needed money for her new house.

    Look at the names of the books "Healing Pelvic Pain", "Ending Male Pelvic Pain"...get the hell out of here. You put some stretches in a book and tell people to breathe diaphragmatically. WOW.

    These are people who went to crappy colleges and see pelvic pain as an "emerging market" - ie one filled with desperate people who will spend exorbitant amounts on the hope of a miracle cure.

    It's not everyone...I did have one P.T. who, although expensive, at least really tried to help.

    But if any of them really had any scruples, they'd charge half the rate and call it "experimental" or "unproven". Instead they convince themselves of trigger point b.s. and suck the money out of your wallet like a vacuum.

    Until there's some real proof or advancement in the field, I do believe self care is the way.
    Jason32 likes this.

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