How I'm beating this.

[johnnyblotter]

Davyboy, I'm definitely going to try the TRE. Do you have any resources that would be a good starting point...and/or did you see a TRE therapist?

[davyboy]

Davyboy, I'm definitely going to try the TRE. Do you have any resources that would be a good starting point...and/or did you see a TRE therapist?

I found one in Vancouver. I had to look for a somatic therapist. Honestly, if you just buy the Shake It off naturally video from Dr. Bercelli's website that should be sufficient instruction. I am LOVING IT. It just keeps getting better and better. I am finding even my compulsive, negative thinking (which is what got me tangled up with CPPS) is disappearing. It's actually quite astounding what a month's worth of TRE is doing for me. Maybe the stars aligned and all of my work is finally paying off with the meditation, heartmath, acupuncture, CBT... but the TRE is providing almost immediate relief.

My one caveat: Go slow. Self-regulation is key with TRE.

[davyboy]

More on TRE in the medical setting. I'm convinced CPPS sufferers are in the 'freeze' state.

In fact he brings up CPPS in the talk!

[johnnyblotter]

Meditation doesn't help much if you're physiology is locked in a freeze state due to trauma or stress. You have to release that on the physical level.

YES. You've hit the nail on the head with this.

I did SO MUCH meditation and while it helped me to stay calm and was a great coping mechanism, it just wasn't cutting through the "freeze state". That is the perfect term for it. TRE is an extremely clever way of helping your brain to shake off (literally) this freeze state.

I had tried doing just the shaking, just copying the videos online and it seemed like there was something worthwhile there, but when combined with the exercises building up to it, it just turns into a very therapeutic 30-40 minute session. Taxing the leg muscles is the key to creating the effortless shaking, which can then move from the legs to the rest of the body. The shaking helps your brain create new connections and discard old ones. It is simple and elegant. Hats off to Dr. Berceli for coming up with this. It's really worth looking into and I would love to see more people getting results using it.

[johnnyblotter]

Hi all,

It's been quite a few months since I've posted. I'm still struggling with my one symptom - a tight, heavy, buzzy, jammed up feeling in the pelvic floor way up to the right and back. About 2.5 years I had an instance while masturbating in a cold apartment (and already stressed from some minor pelvic floor irritation) where I literally felt a muscle in the back right "zip" tightly and jam itself in an unnatural place. My first thought at the time was, how the hell am I going to undo this? I assume it must have been just a whopper of a muscle spasm.

I've put A LOT of work into parodoxical relaxation, lowering stress, plus doing restorative yoga (I'm talking roughly 2 hours a day combined of all this) and am now working with Dr. Schubiner's book Unlearn Your Pain. As I have so many childhood issues, it's not hard for me to believe repressed anger is associated with the muscle spasm.

At the same time I've really dropped my workload to a very minimal level...I do have some money saved so I can have a much lighter schedule for 3-6 months.

I still can't say what exactly my diagnosis is other than a levator spasm, CPPS, etc..the idea of trying to distinguish this from a nerve issue seems a waste of time and money. However, it does seem that there is both a muscle and a nerve issue happening at the same time...like the nerve is constantly irritated from the spasmed muscle. It is like the muscle is in the wrong place, and no matter how much relaxation I do, and how much it seems to relax and move in the right direction, it ultimately will never relax into the right place. During my breathing I often feel it spasm and flutter. If I take a faster and deeper breath sometimes I can induce it to spasm and flutter, but it feels like the spasm goes so far back that only the part closest to the anus is sort of relaxing. The result is that I just feel jammed up all the time, with a tingly, buzzy, irritated sensation along with the muscle displacement feeling that is so annoying.

The idea of just ignoring it and going on as if isn't there is an appealing idea. I'm sort of tempted to go full on with the mind-body work. One of my issues might be that my work (web development) is kind of stressful and unappealing. I like it when things go smooth..it's often easy and steady, and in my mind it funds my dream to be able to have a music space and work towards doing film music (I used to do music for the History Channel).

That idea is a doable thing but to work toward that requires a lot of stress. There's no way to be doing that without a lot of stress so I've been listening to my instinct to let that go at least for a while and just try to take some time to relax. But I'm also getting older (41 now) and the worry looms in my head of not being able to feel better and stuck living a passionless, super low stress lifestyle where I just potter around, make enough money to live, and get occasional enjoyment from doing things every once in a while. I have always learned anything in life using stress...it seems like some amount of stress is necessary to learn anything, but it just all feels unhealthy so I've just resorted to low stress, semi-mindless work, pottering around, walks, going to yoga, doing Mind-Body work...a sort of long term working sabbatical / vacation type of situation.

Thankfully I have a great relationship. This is a hard problem. I'm sitting here reading a study on the efficacy of electrogalvanic stimulation for levator ani and wondering how much of a potential waste of time and money that could be.

Any feedback is appreciated. This is just difficult.

[webslave]

I'm sort of tempted to go full on with the mind-body work.

Certainly worth trying

my work ...is kind of stressful and unappealing...a lot of stress... the worry looms

Anchors that stop the boat moving.

not being able to feel better and stuck living a passionless, super low stress lifestyle where I just potter around, make enough money to live, and get occasional enjoyment from doing things every once in a while.

Getting older often means trading in dreams for sometimes mundane reality. The good news is that you reconcile yourself to this as you get even older, and you realise it was never that important, or never meant to be, and you become happy with your lot.

electrogalvanic stimulation for levator ani and wondering how much of a potential waste of time and money that could be.

Probably a waste unless root caused are addressed.

[johnnyblotter]

Are you saying it's impossible to get some zest and ambition back in life? I'm not ready to accept that. Maybe one day I'll be forced to but that day's a long way off. Come on! I got fight left in me! Jesus!

[webslave]

No, not saying that, but I am saying that sometimes the dreams we have earlier in life are not realistic. Re-imagine your dreams. For instance, think long and hard about how you can have music in your life within the lifestyle that you currently have, not how you will be a film musician (could be unrealistic). Accept that computers are how you will make your bread and butter, and music will always be your hobby.

[johnnyblotter]

Such a narrow outlook. I've made money doing both. I made 15k doing music for The History Channel one year. Why can't I make money from both?

I've played probably 500 gigs on the drums and made maybe 20-30 grand doing that or something. And I ran a project studio for years and partially made a living from that.

So no, I don't accept it. I'm not saying I'm counting on being able to fully make a living doing music but I really dislike how you've framed it.

[webslave]

In that case, have the courage of your convictions and go full bore into the music career. You are stuck in the middle somewhere now, and it's causing stress. So either re-draw your future life's goals to make the current life less unpleasant, or give the dream a workout.

[johnnyblotter]

Well I mean I'm not gonna quit my day job. I'd be perfectly content doing my web business part time and working on my music in the afternoons, evenings, etc. and I don't care if I don't make money from it though of course I'd like to. There's no rule against making some money from both pursuits. The point is it takes vigor, learning and stress to be working on this stuff and my health is just not allowing me to do it currently. So I just decided to take a short term sabbatical from those goals to focus on my health. I think it's perfectly reasonable, I'm just not thinking it has to last forever...to think that way is depressing.

I'm actually about to talk to Alan Gordon, so I may be working with someone from his team soon. I do agree that I'm stuck, a bit unsure of how to best use this time to improve my health. My list of health problems is a mile long and my issues are a mile long so I think it's time to get a therapist.

[webslave]

Interesting to hear what they say

[johnnyblotter]

HOLY CRAP. Guys! I had my "Sarno moment" where everything friggin clicked and I finally got it. This was after a therapy session last Thurs... I had an epiphany on Friday. Mark me down as a total believer. I've felt just way better the last couple of days and I'm not really worried about it now. I know this sounds amazing. It is amazing. I'm not totally better, but just much better (yes, that fast) and I understand how to approach the problem now. I've had more life the last couple days then I've had in over a year. Thanks to Carbonevo for linking to that video from Alan Gordon. Now, as Gordon mentions people usually have some sort of relapse after their initial big improvement. Maybe that will happen to me. But this is just different than anything I've felt before, extremely different and nothing at all like my fruitless physical fixes.

Here is the journaling stuff that I quickly wrote down when it all clicked: please note it was written down super fast and I haven't edited it. Only later did I realize how Sarno-esque it sounds!
-------------------------------------------------------
I was in the shower after a day of obsessing and feeling miserable. I found myself daydreaming about being in the doctor's office of a woman who is supposed to be the top pelvic floor specialist md in the city.. Shrikande is her name. So in this daydream (at night in the shower) I am like proudly telling her... Yeah, nothing works. Like with all her fancy shmancy degrees she wasn't close to knowing how to understand this. So right when I told her that, the pelvic floor clenched or just became noticeably more irritated in that moment. So I tried to think... Why did that happen? And I put it together that I was belittling her and that I have this need to belittle other people. And the way I usually do that is with music, especially with people who have gotten a lot further than me who I've known... I need to feel like what I'm doing is better than what they're doing, and it turns into and endless cycle of frustration that I'm not doing anything, instead sitting here writing crappy code with a lump in my ass. I do this belittling thing maybe because my dad did that.... He would say, you don't need to be told what you're doing well, only what you're doing wrong. And it's also true that there's some jealousy there because earlier in life I was in these people's circles and even ahead of them... But the thing is that to be so difficult about tastes is something I get from my mom, she is THE MOST difficult about taste and such but what that could mean is that if I need to feel like I have to be good at something, and good in a brilliant way that would appeal to people with difficult (impeccable) tastes then perhaps subconsciously I have the need to be EXTREMELY GOOD AT HAVING PROSTATITIS. So good, that when I see the doctor I am telling her, OBVIOUSLY nothing worked because I'm so good at this. I can't say that about my music because there is only bits and pieces of it, not enough, and a lot of lost potential with brilliant people. Perhaps the answer is to not get upset at what other people are doing. Have I been trying to get good at prostatitis because I have to be good, in a difficultly brilliant way at something? Subconsciously? So the answer is to send the loving kindness to some of these musicians. I wish them well, and success, and safety, and a relaxed easygoing life despite whatever I am going through.

Emotions -->belittings -- indignance/pride ---> subconsciously it's about prostatitis in place of what I would like to be good at. Wounded pride... Feeling small? What emotion is feeling small? Frustration is what it is. This is about indignance, pride, frustration... But what's even behind that? Anger at not doing better with the music at a younger age. I need to forgive myself.

So how do you become terrible at having prostatitis? You have to do the same thing you do to get bad at piano, which is ignore it... Not deal with it....

Needing to be good at something difficult. Feeling like a failure = sadness.

Is prostatitis a skill?
-----------------------------------

Let me repeat... A gigantic weight has been lifted off my shoulders and I've felt great the last few days. I had a "placebo" day on Thursday right after therapy, but then Friday was horrible... I tried all kinds of stretching bullshit, went to yoga, thought about smashing shit. Before this shower I actually spent about 3 minutes tiring myself out just punching really fast at the air and shaking my fists really hard. And that I guess sort of helps to get at the unresolved anger. Unlearn your Pain alludes to doing this as well.

This is just major for me. I REPEAT, I AM NOT CURED, but I feel just so much better about things. I don't expect it to be this good, I fully expect it to kick back sometime (and Alan Gordon says that happens a lot) but I know now how to fight it! This is so different and exciting, to be honest. I was out having fun all day today.

YES.

[johnnyblotter]

I'm going to add one more thing to this. This looks like a lot of the stuff the Sarno believers say, and when I read their stuff I still didn't get it, and I didn't get it for the longest time. I would like to really think about it better so I can explain it more clearly. What I can say is that you have small impulses all the time, things like little patches of anger or frustration, that can go along with things you've said to people or that they've said, or, in my case, an imaginary conversation. I would always just go along with the horrible bad feeling but this time I really consciously tried to unwind it, and it's exactly like Sarno said...there are uncomfortable issues hidden in there you don't want to deal with! They only become apparent once you really think about it and unwind it. Who wants to admit they have this thing where they belittle other people because they feel bad about what they're doing? THAT IS WHAT CREATES THE TENSION. That is what Sarno means by "think psychologically". Amazing. What a genius he is.

I think as men we're seriously programmed to not figure out emotions. It's just "emotions". Angry, sad, etc. But when you think about what they are it is possible to uncover what these underlying emotions actually are. Start really thinking about your little angry patches during the day. That little thing with your mom or friend or boss...really think about every little emotion that goes into that. Something in there is creating the tension. You're expressing it with the prostatitis. You're getting good at having prostatitis for some reason. Or to prove something, or because something else is unresolved.

Final thing. In my case there was a direct spasm exactly in the place where I have my pain, so is it possible that there's also a physical component? Maybe. But with the Sarno stuff clicking, it just went down so much that I'd be able to be pretty happy even if I never got past this level. And I felt like this solution makes it very possible to give the area time to heal, since I'm not expressing this emotional crap through this pain anymore!

[johnnyblotter]

Hi all, I just wanted to post here since I've been away a few months and am still struggling.

In my last few posts I was pretty excited about a mind-body cure that I thought I was making progress with...but again, as with some of my other excitement about various things, I've found it's not really getting me much further towards improving.

I still don't have ED, urinary issues, or pain anywhere other than an incredibly irritating stuck muscle in the levator area on the right side. The muscles just feel like a mess...after a light clench, they don't return to a natural place in a normal manner..it feels like it takes seconds for the muscle to return. I also have a lot of nerve pain and bubbling, electric sensations in the area. It feels like some muscle has spasmed and is stuck behind something else.

Over the last 3-6 months I've been pursuing better health with steady regularity - meditating 10-20 minutes or more a day, taking a lot of walks, doing restorative yoga, and have since added foam rolling and a more thorough internal / external trigger point regimen.

I had an MRI done of the area and was told by a pain doc he didn't see anything wrong, but I wonder if it would be worth getting another opinion or pursuing something a bit more aggressive.

I did experience some mild but noticeable pain relief with Claritin non-drowsy 10mg when I took it at night...a few of the following days were a bit better. I also just started medical marijuana...a 1:1 CBD/THC ratio for the day (which seemed good, but it's day one) and a 20:1 THC/CBD ratio which I can already tell isn't good. Whether a CBD based product will help long term, who knows. It did seem to give me a little kick and motivation.

I've really been quite humbled by this disease. I put 1-3 mindful hours of work into this per day and I'm about 2.5 years in, with only an extremely slow improvement. I just don't know where to go next really, and I get through each day the best I can, but I wish there was some way I could get some positive, noticeable movement in the right direction. I'm not sure what I'm missing.