Overdue Check In With A Good Amount of Success

Male pelvic pain, prostatitis, IC
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Cree
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Re: Overdue Check In With A Good Amount of Success

Post by Cree »

Great stuff Carbonevo/Major!

I've been following both of your posts and advice. On Carb's advice I've been doing Alan Gordon's recovery program with some success. Unfortunately I've been getting some significant testicular pain lately that it either due to the fact that I've been going through lots of stress lately (Changing jobs and going on several interviews), and the anxiety is triggering the testicular pain, or I'm having an extinction burst, because I'm no longer reinforcing my testicular pain with fear and attention. For example, I have this weird conditioned response where if I masturbate with my right hand I often have pain during ejaculation, whereas if I use my left hand 9 times out of 10 there's no pain. So I will deliberately use my right every time to show my brain I'm not afraid of the pain. Still working things out....

Chris
Age: 42. Onset Age: 21-22, then a break, then 27-29, then a break, then 40-present. Symptoms: waxing and waning testicular pain (right only), painful sex and ejaculation. Helped by: physical therapy. Worsened by: sexual activity, ejaculation, prolonged sitting, cold weather. Tests/Prior Treatments: urinalysis, pelvic CAT scan with contrast dye, cystoscopy, urine cytology study, nerve blocks, radio-frequency ablation of the inguinal nerve, testicular ultrasound, antibiotic courses including Levaquin and Cipro. All tests were normal with the exception of urinalysis which revealed microscopic traces of blood. Medications: Klonopin 0.5mg.
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Re: Overdue Check In With A Good Amount of Success

Post by MajorSky1 »

Merry Christmas!

Once again, I had a nice reply typed out, but I must have taken too long so it timed out and erased what I wrote.

In a nutshell, yes. All good stuff. NS system is the issue now, not physical injury. Ignoring, distracting, not giving a f*ck is the best way to deal with it, but not always easy, so give yourself a break when needed. That's what I meant when I was referring to it taking time to recover. Ideally, it should be instant. The reality is that it's not. Understanding that it could take time helps to relieve frustration and more stress by having expectations that it's going to just go away one day for good. It may, but just because it may not resolve in a day, and stay gone, does not mean it won't eventually resolve.

If you can make it vanish for good in a day, more power to ya. Good to stay optimistic. Either way, it's not good to be hard on yourself.

Cree, I'm in the middle of testicular/epididymis pain too. It usually seems to come and camp out for about 3 weeks, and then resolves for a while. And it also seems to be aggravated and started up by ejaculation. I can feel pain spots along the epididymis when I palpate - probably the only pain spots I can actually find besides occasional pain spots (not trigger points) in the front corners of my pelvic floor. That is the pudendal nerve for me. And possibly the genitofemoral as well - not that it matters except for knowing what stretches to do.

Mine is also caused by stress/anxiety. Interesting about the left and right hands.

Stay the course and keep the no fear mindset.

Happy Holidays!!
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Overdue Check In With A Good Amount of Success

Post by Cree »

You too Major: keep fighting the good fight, you WILL bury this condition!
Age: 42. Onset Age: 21-22, then a break, then 27-29, then a break, then 40-present. Symptoms: waxing and waning testicular pain (right only), painful sex and ejaculation. Helped by: physical therapy. Worsened by: sexual activity, ejaculation, prolonged sitting, cold weather. Tests/Prior Treatments: urinalysis, pelvic CAT scan with contrast dye, cystoscopy, urine cytology study, nerve blocks, radio-frequency ablation of the inguinal nerve, testicular ultrasound, antibiotic courses including Levaquin and Cipro. All tests were normal with the exception of urinalysis which revealed microscopic traces of blood. Medications: Klonopin 0.5mg.
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Re: Overdue Check In With A Good Amount of Success

Post by MajorSky1 »

Well, I'm in week 7 of school (out of 10 weeks) and I'm pretty darned stressed out, and guess what! Yep, fighting intermittent PF pain, tailbone pain, and post-bm lower abdominal weirdness.

I now realize without a doubt that my brain has learned to manifest stress in these places when I'm stressed out, and along with it comes some amount of anxiety. Been doing a lot of deep breathing, trying to get my head-space in a place where I feel like everything's going to be ok. I can literally feel my guts tensing up lately, and it has caused my bowls to slow down. It's almost like my CPPS has migrated up into my lower abdomen, and even to the solar plexus area.

I manage to have a BM every day, but sometimes it's a little more work than it should be. Strangely, the post-BM pain has actually lowered about 80% on intensity, but seems to have spread farther up into my lower abdomen and turned into a strange, quaking feeling like how you might feel after some sort of trauma. It's been more intense just in the past few days because I have a test Monday, and I've realized that to me, doing well in school feels like a life or death situation. I MUST do well, so I'm putting a lot of stress on myself - which is stupid.

On top of this, I'm still seeing the woman that I mentioned a month ago or so. We ended up have sex a couple weeks ago and it actually went pretty well. No post-sex pain, not even the day after - which I was really glad about. She knows about my pain situation, at least some of it, and she has some reasons for understanding a bit. However, balancing a new relationship, school, and money stuff is a lot stress. But really, that kind of stress if part of life, so I have to navigate it, and deal with it.

So today's pain in the PF has kicked up, and I'm amazed I can go several days feeling almost normal, and then when some stress hits, the pain kicks up like it was never gone. THAT, I'm really sick of dealing with.

I think it's important to push through these times when the pain and anxiety make me feel crappy. This is where I should just carry on like it's not there, doing some meditation, going for hikes in the woods, relaxing in the evening and watching a movie or show.

I'm seeing the girlfriend later this afternoon, and I'm betting that after hanging with her for an hour or so, my pain will vanish for the most part.

On a side note, just learned that my younger brother has been suffering from panic attacks as he's been under a ton of stress for the past year. This was surprising to me because he seems pretty tough. Stress has to be the most difficult thing to deal with on a long-term basis. Sometimes feel like Lucy on the bonbon conveyor belt trying to keep up in managing it. Sheesh.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Overdue Check In With A Good Amount of Success

Post by webslave »



Indeed.

The fact that your brother has panic attacks is very interesting, showing a proclivity in your genetics to stress related disorders.

Stress is an integral part of this condition.

A few years ago I had an argument with Brad Hennenfent, the retired doctor behind the "other" prostatitis website (prostatitis.org) about this. He absolutely sneered at the idea that stress was involved in any way in CPPS. He promotes the fallacious concept of CPPS as an infection, and still does, to this day.

Because of Google's way of ranking sites, his website gets many more hits than this one does, and his website is linked from the the US Govt's NIH/NIDDK's official site, giving him even more prominence. In addition, the US government has allotted financial aid to their organisation in the past, and some big money donors, like Microsoft founder Paul Allen, have donated tens of thousands of dollars to the Prostatitis Foundation, whereas this site runs on a shoestring budget. In total, his "foundation" has received millions of dollars in donations over the years, yet they continue to promote an antiscience view. :facepalm:

The key difference between our site and prostatitis.org is that we deal with reality, they deal with fantasy. Pity the dollars don't reflect it though. :62_58_40:

More on the Prostatitis Foundation
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Re: Overdue Check In With A Good Amount of Success

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Interesting cuz whenever I mentioned the tension/ psyche theory on that site people pretty much always ignored my posts or even some of them started making jokes about that. I feel like not only the admins but also the people are some kind of "possessed" by those little hidden bacterias. When you read the stories there, sometimes you are like wtf... lots of time people come reporting" ohhh this atb finally works !!!", then few weeks later you see them posting about something completely different and asking whether it ever worked for someone.. like seriously what's wrong with people there :shock: They just don't listen, don't accept anything else and freaking keep looking for that one magic pill that will cure them :facepalm:

The majority who recovered or got significant relief on that site were those few who went down the tension route.. but those posts on that site are pretty rare.
Onset Age: 23 , Current Age: 24 Symptoms: Pain in butt/ prostate area, buttocks when sitting for long, pain during sex - especially erections were very painful... pain moved slowly to the left side after reading about the PNE bullcrap. Helped By: Relaxation, massage (temporary relief), the real difference made for me understanding that this is induced by the Brain/Central nervous system as tension, therefore addressing the tension psychologically, not physically. During flare ups I use a strong dose of tramadol - 100mg extended release, works magic for me. If your symptoms improve when distracted or during vacations and stress worsens your symptoms I urge you to:
* Read John Sarno's books
* Read Ezer's story on this site.
* Explore the TMSwiki site and read every single success story there. (even the non CPPS)
* Pay a special attention to Alan Gordon's posts.
* Read Clair Weeks book Hope and help for your nerves (apply the concepts to CPPS).
Current status: more or less cured if stressful events and emotional conflicts did not flare up my symptoms. This does not affect my life in any aspect anymore, because I dont allow it to.
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carbonevo
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Re: Overdue Check In With A Good Amount of Success

Post by carbonevo »

MS, your situation mirrors mine... you go days or even weeks pretty much cured then stress hits and CPPS is back.
Please dont forget about the conditioning, imo it plays a major role in chronic pain.. we are conditioned to lots of situations associated with the pain. For me even such a silly thing as playing billiard. One time I was out with friends and had a terrible time when playing it.. since then whenever I play billiard the thought of that bad days is imprinted in my memory so I feel an ache pretty much always whenever I play it, though never bad as in the first time. Not much different it is with stress... we know stress triggers our CPPS so we expect it to do so and once you expect it to happen, it will inevitably happen. So here once again we must recondition the primitive brain that pain is useless with stress, and that's the hardest part as when we are under stress thus in fight or flight mode, the muscles tense and nerves become hypersensitive
Onset Age: 23 , Current Age: 24 Symptoms: Pain in butt/ prostate area, buttocks when sitting for long, pain during sex - especially erections were very painful... pain moved slowly to the left side after reading about the PNE bullcrap. Helped By: Relaxation, massage (temporary relief), the real difference made for me understanding that this is induced by the Brain/Central nervous system as tension, therefore addressing the tension psychologically, not physically. During flare ups I use a strong dose of tramadol - 100mg extended release, works magic for me. If your symptoms improve when distracted or during vacations and stress worsens your symptoms I urge you to:
* Read John Sarno's books
* Read Ezer's story on this site.
* Explore the TMSwiki site and read every single success story there. (even the non CPPS)
* Pay a special attention to Alan Gordon's posts.
* Read Clair Weeks book Hope and help for your nerves (apply the concepts to CPPS).
Current status: more or less cured if stressful events and emotional conflicts did not flare up my symptoms. This does not affect my life in any aspect anymore, because I dont allow it to.
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Re: Overdue Check In With A Good Amount of Success

Post by webslave »

Carbonevo, the infection-delusion is very powerful. Even some uros have their reputation and careers wrapped up in the idea, and even today you get studies coming out trying to prove it. But medicine is looking at more subtle ideas now, eg viewtopic.php?f=4&t=8695
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Re: Overdue Check In With A Good Amount of Success

Post by MajorSky1 »

There isn't a single bacteria out there anywhere that would behave the way they say on that website - with the exception of MAYBE the Lime's spirochete. Still, that spirochete is not exclusive for the pelvis, and I haven't ever heard of anyone with CPPS having ANY of the Lime's disease symptoms. So these guys slapped together a scheme to make it look like bacteria caused CPPS so they could get lots of money. That's unconscionable. And where is their proof?

I am curious if there have been any studies or tests to search for a virus in the nerves, ganglion, or muscle tissue that may prefer that tissue in the same way HSV prefers genital nerve tissue that could cause such a thing. The difference with a virus is that there would be no "cure" but the body would have to take care of it. Doesn't really act like a virus either except that sometimes it can feel like there's something attacking the tissue or nerves internally. Not saying that's what I think it is, but just curious if that has ever been looked into or ruled out?

Carbonevo - you're right. I did say to myself that i'm going to probably get stressed from this test coming up, and so I did. It's been a doozy for a couple days too. Most of it is intermittent panic attack sensations, and intermittent pain flares. It's kind of like quicksand - once you sink past a certain point, you almost have to let go - can't fight it. Doesn't change the fact that I'm effing sick of it. Heh!

I iced that tailbone spot, and it's been much better. PF had that drag down pain spots in it this morning, but I went for a hike in the sun and it subsided.
Spent last night with my girlfriend, and couldn't sleep in her bed. There was no fan! :wtf: I could hear every sound my body made while I laid there trying to get to sleep. Can't sleep without a fan. So this morning's drive home was full of that anxious heartbeat, waves of bad feelings, and some abdominal and PF tightness which I staved off with lots of deep breathing as best I could.
3 more weeks of school and then I can relax for a while. Gotta do it.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Overdue Check In With A Good Amount of Success

Post by MajorSky1 »

OMG, that Lucy episode gets me every time! Funny! But it's also relevant to my analogy. Thanks for posting it! :D
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Overdue Check In With A Good Amount of Success

Post by webslave »

MajorSky1 wrote: Sun Feb 19, 2017 9:48 pm I am curious if there have been any studies or tests to search for a virus in the nerves, ganglion, or muscle tissue that may prefer that tissue in the same way HSV prefers genital nerve tissue that could cause such a thing.
A study using PCR failed to demonstrate the presence of viral DNA in CPPS patients.
https://pubmed.ncbi.nlm.nih.gov/12597955
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Re: Overdue Check In With A Good Amount of Success

Post by carbonevo »

Webslave IMO there are worse sites than prostatitis.org and which are doing far more harm... the f@#$@ing PNE site. Seriously the admins and quack surgeons there should be jailed for their charlatan quackery.. first they associate every single symptom of the pelvis with pudendal nerve entrapment... you get desperate, get into deep anxiety and depression, see your life almost over and the only way out is their 20k surgery with one of their quack surgeons.. ofc the cure rate is in the placebo realm. Disgusting.
Onset Age: 23 , Current Age: 24 Symptoms: Pain in butt/ prostate area, buttocks when sitting for long, pain during sex - especially erections were very painful... pain moved slowly to the left side after reading about the PNE bullcrap. Helped By: Relaxation, massage (temporary relief), the real difference made for me understanding that this is induced by the Brain/Central nervous system as tension, therefore addressing the tension psychologically, not physically. During flare ups I use a strong dose of tramadol - 100mg extended release, works magic for me. If your symptoms improve when distracted or during vacations and stress worsens your symptoms I urge you to:
* Read John Sarno's books
* Read Ezer's story on this site.
* Explore the TMSwiki site and read every single success story there. (even the non CPPS)
* Pay a special attention to Alan Gordon's posts.
* Read Clair Weeks book Hope and help for your nerves (apply the concepts to CPPS).
Current status: more or less cured if stressful events and emotional conflicts did not flare up my symptoms. This does not affect my life in any aspect anymore, because I dont allow it to.
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Re: Overdue Check In With A Good Amount of Success

Post by carbonevo »

MS, dont tell yourself 3 weeks and then I relax. Dont feed it. Live your life and dont give a heck about it... Hard I know... But there's no other way out. Few days back I was struggling too.. changing jobs, my always healthy grandma diagnosed with a brain tumor and lost her ability to walk... Depression and CPPS hit me hard. I was on tramadol for a week for the first time ever.. partly due to the depression (in my case it works perfect for it as well..)
Then I said to myself stop. I stopped the tram and giving into and completely went ignoring it... CPPS disappeared.
Onset Age: 23 , Current Age: 24 Symptoms: Pain in butt/ prostate area, buttocks when sitting for long, pain during sex - especially erections were very painful... pain moved slowly to the left side after reading about the PNE bullcrap. Helped By: Relaxation, massage (temporary relief), the real difference made for me understanding that this is induced by the Brain/Central nervous system as tension, therefore addressing the tension psychologically, not physically. During flare ups I use a strong dose of tramadol - 100mg extended release, works magic for me. If your symptoms improve when distracted or during vacations and stress worsens your symptoms I urge you to:
* Read John Sarno's books
* Read Ezer's story on this site.
* Explore the TMSwiki site and read every single success story there. (even the non CPPS)
* Pay a special attention to Alan Gordon's posts.
* Read Clair Weeks book Hope and help for your nerves (apply the concepts to CPPS).
Current status: more or less cured if stressful events and emotional conflicts did not flare up my symptoms. This does not affect my life in any aspect anymore, because I dont allow it to.
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Re: Overdue Check In With A Good Amount of Success

Post by MajorSky1 »

Webslave! Thank you! Just wanted to see that! Much appreciated.

Carb, yeah, I agree. It's not really the pain/anxiety that I'm thinking of though, but the unavoidable school stress. Trying to alter my paradigm on that though and use it to shift thinking. What I find happens is that I start thinking of the future by subconsciously comparing myself to other people who look happy and successful, and then I start thinking that because of this pain I'll never have that. A form of catastrophizing. But then I'm like "Wait a damn minute! Look at what you've done with this pain, man! You ARE one of those successful happy people! You're doing it, and you will get through this!"

I appreciate the moral boost, man! You're a good lad! I'm at about the same point in the battle as you, it sounds like. I live with my dad whose health is poor and I'm watching him give up. He's too afraid to die, to die, but doesn't really have the will to fight - so that wears on me, and with how I see it affect my mother. It's caused me to really hate aging, so much so that I have anxiety about it - which is where I think this all sort of started. A complex thing to explain. I'm looking into the possibility of PTSD, and I've had some people who have it say that it sounds like I have it too. Not that it's going to make a difference in too much - but maybe it would help me hash some things out with more specifics.

I have a second round of really bad sore spots at the back base of my skull that are really annoying. They're in slightly more lateral position than the first round - and I might have triggered them when I was doing pull-ups a week ago and went for that last one and may have tightened those muscles up until they cramped. So weird. NEVER had stuff like that before. Like I said, it feels my my CPPS is trying to resolve, but my brain is like "OK, you've won down in the pelvis, but I can make you hurt somewhere else!"

Anyway - onward! I have a test in a couple hours, and honestly, though I've been studying hard for it, trying not to give an eff how I do on it.

Thanks for the note!

Do not go gentle into that good night
Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Overdue Check In With A Good Amount of Success

Post by webslave »

Carbonevo, I agree with your PNE comment completely. :clap:

Major, I get trigger points at the base of the skull in my neck (suboccipital muscles of the neck, under the back of the skull) from too much concentration and holding the head in one position. You may be getting them because of work/study. Just treat them as normal trigger points and it'll be fine.

It's a well known phenomenon:
base-skull-trigger-points.jpg
base-skull-trigger-points.jpg (12.81 KiB) Viewed 871 times
Massage Therapy for Tension Headaches

Here's the weird thing: no conventional doctor would ever tell you this. :crazy:
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