How I'm beating this.

[johnnyblotter]

I didn't have any pain three years following the hernia surgery, so I don't think that's it. I just wonder if it was and event causing some of the hernia material to enter the bowel.

Either way I am not sure what to do next.

[johnnyblotter]

I'm starting to really think my hernia mesh has something to do with my problems.

The onset of my severe symptoms came from masturbating where I distinctly felt something kind of crunch and glitch. Now I think that by clenching the pelvic floor muscles too much, I might have pulled some mesh and/or scar tissue into the pelvic girdle in an uncomfortable place.

When I do the paradoxical relaxation, after a few minutes when everything starts relaxing, I always become aware of an area to the back right where it feels like there's a tight little mass there.

I get very odd pulling sensations from that spot as well. The pulling is heavy and slow, like slowly stretching a really strong piece of taffy or something. It's a semi-voluntary thing...sometimes I just let it pull, thinking that that's maybe what my body wants to do. At first I thought it was a muscle spasm, but now I wonder if it's a bit of scar tissue and mesh that got pulled into that area or entangled in a muscle or something.

Webslave, do you think this is a possibility?

[webslave]

I recommend an ultrasound to look at the area in case the mesh has moved. The other possibility is an adhesion, common after operations.
https://en.wikipedia.org/wiki/Adhesion_%28medicine%29

[johnnyblotter]

I saw my old urologist today, who'd helped me quite a bit in the past with my stricture issues.

He said he highly recommends a cystoscopy based on the fact that I've had 3 strictures previously.

When I suggested it was highly unlikely I have any stricture since I have zero urinary issues, he said, who knows, sometimes you can be surprised by what you find...and that before trying nerve blocks or anything else I should have that done. He did a bladder ultrasound...unfortunately I haven't checked this board in a while, I didn't ask him to look at the mesh area.

I'm also scheduled for a CAT scan on Friday. My gastro suggested I do this when I told him about the mesh thing. Marilyn Freedman (who I've started seeing again) wasn't sure how useful that was, but now two docs have suggested it, so I went ahead and scheduled. I suppose an MRI would be next.

For the cystoscopy, he said I could use an anesthesiologist. I had about 12 of these done with just numbing jelly years ago, but hated it and was traumatized by it, so I said let's use the anesthesia.

I really am confused about what tests might find anything of interest, so I figure I'll just hit my $2200 deductible with all the tests and go from there.

Last thing on my mind is that I'm on another course of Flexeril (cyclobenzaprine) and combined with my very productive visit to Freedman last week, seems to be lowering my symptoms. I read that people take up to 30mg a day of this stuff...I've been on 10mg at night for 9 days now, gonna try to get another week's worth. As I understand 10mg at night is fairly typical, but it does seem to be of benefit.

[davyboy]

Checking in.

No longer suffering from CPPS, but spent months with headaches and major depression and no lust for life. NOTHING seemed to shake the underlying sense of anxiousness, general fear and just general unease I felt at all hours of the day. Went through months and months obsessed with my health and being in an overly hyperactive and hypervigilant state from morning till bedtime. I saw a psychologist, I did yoga, I did meditation 45 mins a day (been practising meditation since 2014), practised hearthmath (with a sensor), even bought a breath monitor called spire. NOTHING seemed to erase that general worry I felt all day long. Came across the commentary in this thread about David Bercelli's TRE program and wanted to chime in. I bought his video Shake it Off Naturally and have to say after having spent a few months practising this process of somatic release, the anxiety is disappearing. My thoughts are more positive and now when I meditate or attend acupuncture I actually FEEL better after. That is, these modalities are actually complementing the somatic releasing and helping me relax. 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. This has been so helpful for me as I had a lot of unresolved trauma that talk therapy could not penetrate. While I don't have CPPS any longer, my stress and anxiety and worry showed up in other physical ways (headaches, fatigue, etc). CPPS in my opinion is a consequence of a mind state. Please I encourage you to check out somatic therapies and tremoring, I can't believe the effect it is having on me.

[webslave]

CPPS in my opinion is a consequence of a mind state. Please I encourage you to check out somatic therapies and tremoring, I can't believe the effect it is having on me.

Very interesting report. I have passed this info on to Dr Wise.

[Alphalifestyle]

Interesting, I read several reports by people with the different manifestations of male pelvic pain (CPPS, Hard Flaccid, Pudendal Neuralgia) who named TRE as an important part of their healing regime. Another hint, that CPPS at its core is not about a muscle cramp or triggerpoints, but a dysfunction of the HPA axis. You might also say its just one of many manifestations of a mind-body syndrome / trauma. That also explains why many people like you have one dysfunction & symptom replaced by another one, because the underlying nervous tension was never resolved or as Dr. Sarno would say the psychological need for a distraction in the form of a "body problem" to keep repressed emotions repressed is still there.

How often and how long do you practice TRE? Is your shaking getting more intense?

[johnnyblotter]

I'm going to have to again examine TRE. I have, at times, had a few surprising moments using some of Bercelli's techniques (as well as Sarno's). At the root I always believed my CPPS to be the result of a crazy muscle spasm that happened 1.5 years ago during masturbation. I physically felt a muscle just get crunched or zipped into the wrong place and I immediately realized I was in trouble.

At this point I am now 7 or 8 sessions in with Marilyn Freedman and have been pretty disciplined about my meditation, stretching, walks, and finding and working out trigger points. I've gone by the Wise Anderson protocol as much as possible (without attending the clinic). I put in probably 2 hours of mindful work per day...meditating, walking, stretching, foam rolling, doing some restorative exercise, etc. Marilyn has a lot of experience with the protocol and at some point I decided that I really needed to give it a very focused effort.

Unfortunately I am not able to make much progress. Marilyn is now giving me recommendations for doctors who can do emg nerve or neurography studies as she feels there could be pudendal or other nerve irritation or neuralgia. There is a lot of electrical sensation on only one side. I know that the pudendal nerve thing is dismissed on this forum quite a bit, but that's what she recommended I do.

There have been a few sessions with her where, after a few days of flare, I did experience a notable decrease in symptoms. I have tried my best, working with her, to see if we can map where these trigger points are and make sure to hit them repeatedly. I really think she has a great bedside manner and a good ability to do the internal work, but I also feel like the specific trigger points are not really being mapped. I get the sense that it is not an easy thing to do. She relies on me telling her to go a little bit this way and a little bit that way. We've identified spots in the puborectalis, pubococcygeus, and obdurator internus, and along the ischial spine...however, at each session it still seems that it's a bit of guesswork.

So, as is too often the case with this frustrating condition, I just can't tell for sure if any of the minor improvements I see are because of all the therapy and work I put in, or are more due to simply the passage of time.

I should also mention I did 11 sessions at a "fancy" pelvic pain P.T place in NYC (not one of the most well known, but expensive nonetheless) that was utterly useless. What I feel that Marilyn does well is that she knows how to safely access some of the hard to reach areas, so sometimes it feels like difficult trigger points were located and worked out.

The next steps towards a multi-modal approach are going to be some combination of osteopathic, neurological, mind/body, and perhaps something called functional manual therapy. It's all pretty overwhelming and frustrating that even in NYC it's so hard to find qualified people that really know what they're doing, and will cost and arm and a leg either way.

As I have been unable to get healthy for years at this point, the TRE stuff once again seems like it's worth messing with. I have tons of trauma stemming from childhood that I'm certain has contributed to my current state.

[johnnyblotter]

I'll also add here that I just started doing biofeedback. I have the machine and have been working with it for a few days...I'll report back on its efficacy. Perhaps others are considering doing that as well.

[webslave]

I have tons of trauma stemming from childhood that I'm certain has contributed to my current state.

I've noticed that people with deep historic trauma do less well with the Wise Anderson approach. Our forum now has several members who were only successful when they used additional approaches. But I do not think that patients with past psychological trauma issues make up a large percentage. I'd like to see this formally studied so we know how many CPPS patients need the more extensive treatment in order to "penetrate" (davyboy's word) the condition.

[johnnyblotter]

My thinking at this point is that 1)I still haven't gone deep enough into the approach and 2) I haven't found the right complimentary treatment

It's been about 4 months since I really faced up to the problem...it was as David Wise has said...I hadn't suffered enough. After enough misery I went full in on it. And now I've done 6-7 sessions of the internal work.

I have to keep doing the work. I keep seeing 3-4 months of pelvic floor therapy as a timeline (on the sites of various therapists). I'm on about three and a half weeks. So I think it's too early to judge.

I've had fleeting moments of success that make me think that improvement has a lot to do with accepting and embracing the difficulty of the problem and being willing to put in the work required. It's a ton of work. If nothing else, all of the stretching and meditation have really improved my posture, any lingering back issues, and also have helped a lot with mood control.

One bit of psychology that I find interesting and challenging is how the chronic fatigue and my perception of it influence my actions. For example..in my web development work, I have a whole lot of stuff to do that is basically repetitive tasks...not mindless exactly, but not requiring a whole lot of thought. What this type of work does is allow me to kind of put my brain on autopilot and become distracted enough by it that my pelvic discomfort fades into the background.

However I tend to feel that things requiring deeper concentration and learning (learning piano stuff or new web stuff, etc) take a certain amount of stress that upsets the relative calm and balance that I get from being on autopilot. In order to learn new stuff you have to go through some amount of frustration and stress. A perfect example would be practicing sight reading music. I'm not very good at it, but to work on that adds a level of stress to my brain that just seems to put me in a state that isn't optimal for the type of physical and mental calmness that feels healthier.

I guess this is what people mean by adopting a low-stress lifestyle and taking on easier work. At the core of my being I completely hate the idea of living like this in the long term. Somewhere on here someone has said that you can return to a go-getter attitude in the future, but in a more calm way. I'm hoping I can get there. I've come a long way from being on disability and charity housing and no meaningful employment to running a reasonably successful business, but there are so many things I want to do and at age 40 this is a hard pill to swallow. I've had to learn to accept that it's not going to happen right now and that I have simply focus on maintaining what I've built and focus my energy on getting healthy.

[davyboy]

Interesting, I read several reports by people with the different manifestations of male pelvic pain (CPPS, Hard Flaccid, Pudendal Neuralgia) who named TRE as an important part of their healing regime. Another hint, that CPPS at its core is not about a muscle cramp or triggerpoints, but a dysfunction of the HPA axis. You might also say its just one of many manifestations of a mind-body syndrome / trauma. That also explains why many people like you have one dysfunction & symptom replaced by another one, because the underlying nervous tension was never resolved or as Dr. Sarno would say the psychological need for a distraction in the form of a "body problem" to keep repressed emotions repressed is still there.

How often and how long do you practice TRE? Is your shaking getting more intense?

It sounds like we are on the same page here. Really, really agree with what you are saying. For the last few years, I've been the archetype of over-reacting to everything and being incredibly wound up. I could not get my nervous system to calm down and unwind. Meditation was wonderful when I began it in 2013, but in 2015 I experienced some traumatic family drama (finding out my father was an alcoholic). While I dealt with the problem and drama quite well, I think the trauma and underlying stress became trapped inside of me and eventually boiled over. I truly believe I've been in a freeze state for the last little while.

Ultimately, for myself, my experience has been that CPPS is just one possible manifestation of unresolved trauma and stress that is locked into the body. The brain and mind communicate with one another and feed off each other, self-reinforcing the patterns of pain, trauma and anxiety. Years ago it was CPPS originally, then the last few months it became headaches, facial pain, neck pain. The problem just simply moved from one part of the body to the other. The brain-body relationship is complex and no matter how much I meditated or practised the relaxation response (I was meditating 45 mins everyday for 8 weeks following the MBSR program) it felt like 'nothing stuck'. I still felt anxiety. I could not understand why meditating wasn't working or other relaxation programs (because initially I experienced great relaxation with mindfulness when I began in 2013). I kept working at adjusting my expectations and changing my thinking but all day long I would feel just a state of unease. I saw a psychologist, practised CBT. Nothing was working. I had tried everything. I was doing diaphragm breathing for months (even measuring my BPM) and nothing was helping with the pain or reducing my anxiety. Even yoga did little to help.

Since I started with TRE I wake up and I can just feel the tension is gone. I swear, talk therapy and positive thinking and meditation couldn't penetrate the physical trauma and freeze state my physical body was trapped in. TRE seems to release that.

I feel light and happy again. Moreover, now when I practice meditation or focusing on relaxation it actually STICKS and achieves its intended effect. I can't recommend this enough. Oddly, despite having no CPPS pain, I noticed the last few days my urine stream is much more powerful and the post-urine dribbles are disappearing. It's like my whole body is relaxing and returning to homeostasis.

I've now been doing TRE on and off for a few months, last few weeks been more focused and sticking to a routine. 3x a week is what is recommended.
I haven't managed to get the shaking up torso yet. My arms and hands were shaking a tiny bit yesterday but the tremors have been confined to the lower half of the body. I'm going to continue with it for sure and will report back. It feels amazing to have control over my health and body again.

[davyboy]

I have tons of trauma stemming from childhood that I'm certain has contributed to my current state.

I've noticed that people with deep historic trauma do less well with the Wise Anderson approach. Our forum now has several members who were only successful when they used additional approaches. But I do not think that patients with past psychological trauma issues make up a large percentage. I'd like to see this formally studied so we know how many CPPS patients need the more extensive treatment in order to "penetrate" (davyboy's word) the condition.

Well back in 2012, the Wise-Anderson protocol worked for me very well. But I think that a few negative experiences between 2014 - 2016 led to a lot of trauma being unresolved in the body. I encountered bed bugs (which has been known to produce PTSD symptoms in people), found out my father was an alcoholic and went through a nasty relationship breakup. As a consequence, I felt as though I was constantly in a defensive state 24 hours a day, scanning the environment for threats, overreacting to everything in my life. Interestingly, CPPS didn't show up at my door but chronic headaches and other anxiety symptoms did in a big way. To me it is the same problem but just manifesting itself differently. I feel compelled to share this because anxiety/stress has been the cause of every problem I've had in my life. CPPS was fundamentally tied to my anxiety and I think that by addressing it with treatments like TRE/Wise-Anderson/Meditation can really help the men on this forum. TRE has helped me feel like I don't have to adjust my expectations of life, where I had to operate at a very, low, relaxed level with no stress in order to avoid CPPS.

TRE seems to penetrate parts of the body in ways that other modalities can't. I still think meditation and paradoxical relaxation is critical but to truly rid the body of stress/trauma TRE seems to be a necessary practice. I swear, last week at acupuncture I drooled I was so relaxed. I've never experienced that in my life!

[davyboy]

Again, couldn't help but think of the CPPS community this morning. Woke up and did my TRE exercises before work. Went to urinate and my stream was so powerful it nearly knocked me over. I haven't felt that EVER (normally I am start and stop start and stop, even post CPPS). I'm not even on any accredited quercetin product or anything.

[dailysuffering]

Hell ya Davyboy, good to hear! My CPPS also started after a lot of stress, I went through a very nasty break up too at about the same time this developed. I agree with all you've said about stress I've been trying my hardest to work on it but the pain really fuels the fire so to speak. Just recently I had a MRI on my pelvis and found out I have a twist and and tilt that was very noticeable, I'm thinking that the twist and tilt in my pelvis had my pelvic muscles in a tense state to begin with then after going through all that drama it tensed them to the point it developed in to what I feel now. Starting some PT July 19, with a pelvic floor specialist! and been working into getting my pelvis back in line, hopefully will be feeling some relief soon. Thanks for thinking of us Davy, hearing updates like you shared really helps, thanks again!