New Member - Looking for Direction - Notes On What I have Tried

[dsmith_65]

Try reading Dr. Sarno's books. They've helped me tremendously. His theory (he cured thousands with chronic back, joint, etc, pain) is that the brain reduces blood flow to a spot in the body in an attempt to distract the sufferer from unconscious repressed emotions that it (the brain) deems to painful. The reduced blood flow causes mild oxygen deprivation which then causes pain, burning, tingling, spasms, etc. It can affect muscles, ligaments, nerves, and organs. That might be why your ultrasound showed low blood flow. Grab his book "The Divided Mind". I also recommend Steven Ray Ozanich's "The Great Pain Deception". Steve Ozanich suffered from debilitating back pain as well as pain bladder. He cured both using Sarno's theories/approach.

[ChgoGuy]

I read Sarnos book "The Great Pain Deception" when I was off during those 6 months I mentioned. Right after that book, I read "A Headache in the Pelvis"

My opinion is that neither will help unless you get your head on straight and your mind on board with what you are trying to accomplish. For me that is the difficult part.

[HateCPPS]

So 6 years ago this on set all the sudden. I believe it started right after I over held ejaculation in during sex/oral sex. I did the start and stop method for probably about 80 minutes and think I really over did it. Felt something kind of bubble up in prostate area, tried to pee right after and it felt like my pipes were clogged. Whereas normally after ejaculating I would pee with great flow right after.

From there on out I've had ED problems, pelvic pain in perineum area, real tight pelvic floor muscles, slow stream etc. Penis tip pain, which I believe I have correlated to trying to have sex with a 70% erection. I don't have tip pain unless I have sex or try to.


I've had these tests
Urinalysis - Always Negative
Semen Culture - Negative
3T MRI of Pelvis - No Abnormalities - Signs of Prostatitis
Cystoscopy - Urologist marked negative but said slight narrowing in bulbular urethra (no problem passing 17 french scope through though)
Color Doppler Ultrasound - Typical Signs of Prostatitis low blood flow in areas, small calcification but nothing major

Rx I've Tried:

Doxycline - No relief
Cipro - No relief
Ibuprofen - If I take 800 mg twice daily I feel decently better
Daypro 1200 mg daily - Similar to Ibuprofen not quite as good
Elavil 10mg - Really tired - maybe a bit better feeling
Rectal Valium 10 mg - feel totally drained and relaxed but pelvic floor only thing not relaxed
Baclofen - Similar feeling to valium
Medrol Dose Pack - Felt better on day 1 and 2 of taper, then did not notice as much
ED drugs - Feel a bit better on Cialis, like seeing some erection for once. But did give me headaches, heart burn, ringing in ears, and flushing.
Alfuzosin & other alpha blockers- When I take this I feel the area is so much more relaxed my testicles drop about 2 inches farther down. But even though everything looks relaxed I still get bad pain in the perineum area.
Quercetin - Maybe it helps a little?


Procedures -
Bahn Injection (1) - Felt really good for about 8 hours, then back to normal hell.
Trigger Point Injections - Didn't notice too much difference

I've also went to about 55 PT sessions over the last 6 years.


Totally out of ideas and honestly do not know what else I can try. I guess I can go back and retry stuff. Even if I can relax my pelvic floor slightly (10-15%) during PT or hot bath etc. It fells like everything always snaps right back. I sit a lot of the day for work. I can't figure anything out that works. The latest suggestion I have was to try Lyrica and keep going with PT. But PT is expensive and I never really notice any lasting relief. I feel maybe 5% better when I leave a session and I'm not sure if that's even just relief of having the PTs finger out of my A**hole.

I'm thinking it's either something is physically wrong with my prostate or my head/CNS/brain is just F'd up and thinks everything needs to be tight all the time. The PT keeps saying I need to cognitively relax, but honestly I can take a 2 week vacation sit on beach and mellow out and barely notice much relief. It seems impossible.

Open to others ideas of things I should try or retry. I know PT is always being pushed, honestly not sure if I should just quit job and get all stress out of my life for a while and see what happens. It's been 6 years already and I can't imagine having to deal with this for the rest of my life especially with how young I am now.

[webslave]

You have diagnosed yourself in the second last post above.

[HateCPPS]

Appreciate all the comments and tips guys. I'm getting kinda mixed on the threads here, as I thought I had made separate topics/threads but they appear to be combined now. I have also tried the tincture CBD oil (low %) to not much help, I took probiotics while here and there and while I was on antibiotics. I take vitamin D regularly as I was on the low end of acceptable range as of my last blood test.

An additional note: I did have the T test and the result was ~550 if I recall.

I guess my ED problems are really muscle tightness, inflammation, nerve related. Also, noticing as of lately that with bowel movements I have to wipe a million times. And even after I feel like I have done a thorough job. Seems like some extra shit is literally like stuck behind the 'sphincter' or something. Where my muscles are too tight to push the rest out. As my muscles relax during the day it's like I need to re-wipe again. Pretty messed up. Not sure if other people are experiencing shit like that. Funny but not funny pun there...

[cam3roni]

Wiping throughout the day and there being poop in toilet paper is completely normal. Having to wipe for a long time is normal too.

https://youtu.be/vGCIGEUB32M

[ChgoGuy]

I have a similar problem, but for me it really depends on the type of flares I am having at that time. Speaking for myself, I think a lot of times I get that fullness like I have to have a bowel movement, but my bowels are not ready. It's almost similar to being constipated, but I'm not. So I try to pass it, and it's as if I can't complete it. Sometimes when this happens I will wipe endlessly, but it also depends on what I ate. Anyway, I'm pretty sure that fullness in the perineum mimics the need to have a bowel movement. Generally when this happens, an hour or so later, I have a normal bowel movement where the rest of it all comes out. I liken it to having a false urge to have a bowel movement, and in my case sometimes I would have to strain. That's when I know it's not a good idea to force it so I stop and wait. Eventually it does what it wants to do, and not what I think it wants to do. I swear I can tell by the type of bowel movement I'm having, the type of flareup I'm heading towards next. In fact I'd swear while it's sitting anywhere near or above the rectum, that shit is pushing on my bladder causing much of my urge issues.

Not sure if that helped....

[webslave]

Anal cleaning is sometimes best done without toilet paper. You can do it the Asian way, by washing the anus, and not smearing poop around with TP. Done properly, it's even more hygienic than using TP.

1. Enter toilet armed with a 2L (2 quart) jug of warm-to-hot water
2. After passing motions, scoot forward on seat, grasp jug by the side and slowly pour warm liquid into crack, flushing away any solids around the anal area.
3. Follow up with a probing finger to free any solids still in the anal canal. Anus will be receptive because of the very warm water. Continue until finger squeaks against the clean flesh
4. Finger should be clean and odourless, but for safety sake, splash some rubbing alcohol or Hand Sanitizer onto hands, rub all over, under nails etc. Hands should smell of isopropyl alcohol only, 100% sterile.

That'll put your poop problems behind you, so to speak.

[biggerthebad]

HI HATECPPS, you could try dropping a fluconazole tablet - which are one of the womens thrush meds that can be purchased over the counter from a chemist (sometimes eyebrows are raised when a man tries to purchase, you may need to get your partner to buy for you). If you get any response, this could indicate a fungal organism is involved in your symptoms. I, like you, was running out of ideas and took one. Within 24 hrs things were shifting in terms of the chronic pelvic muscle tightness I had experienced. I then saw my doc and got a prescription for more fluconazole and went on it daily at 200 mg/day for 4 weeks. At the end of 4 weeks, things were definitely different in terms of the muscle tightness, and they have remained improved 10 months later. However, the urgency I have also suffered remains. Who knows why - possibly some remnant fungus hiding out protected by a biofilm in some nook or cranny of my prostate, or possibly another non-fungal organism is behind the urgency issue.

[HateCPPS]

So kinda strange today was having a pretty bad flare this morning post ejaculation (as usual).

Was doing some poking/pushing around in the perineum area try to get some of my muscles to relax down there.

As I had kinda a 80% erection I had put my thumb over top base on penis near and then put my index finger and rest of hand behind my testicles and kinda aggressively jostled both sack and penis up and down while pushing up hard into perineum. Doing this it kinda felt as if I was moving my prostate around and I felt that liquidy kinda squishing a water balloon feeling. I did this for about 1-2 minutes... Kinda felt like a prostate massage but without being done rectally. After I did this I have felt massive relief for about the last 8-10 hours. I feel insanely good right now.. like I haven't felt in years.

I kinda remember when I went to Dr. Bahn he did a very aggressive prostate massage after he did the injections that left me temporarily feeling awesome and my pelvic floor very relaxed. (Probably combo of the temporary relief of the shots too but I think the aggressive massage contributed a lot)

Anyway, definitely going to try doing this again. I think it really only works for whatever reason when you have some kind of erection probably because the muscles are all contracted and you're actually able to kinda get like a clamping kind of action on the prostate. But man I have not felt this good in a long long time and felt like I needed to share this. Maybe someone else can experience and report. Kinda hard to describe the action I did.. One of my PTs did mention on how "mobilizing" the prostate is good, so maybe this makes sense from some kind of science point of view.

[webslave]

Probably like what I do after I've been using my brush-cutter/trimmer:



... which usually gives me horrible trigger points in my shoulders, specifically trapezius.



I come inside and spend 10-20 mins with my Wahl massager on my trapezius and neck muscles.



If I don't do that, by the next day I'm in agony. But if I remember to do it, there is no problem. So your maneuver could be giving the pelvic muscles a massage at just the right time.

It's experiments like this that help to move the game forward, so thanks for reporting it.

[HateCPPS]

I went to a new physical therapist who was close to me location wise. This is about my 70th or so session.

This PT did not have me move my legs and went to do internal treatment with my legs completely straight laying down on my back and a few other odd positions on my side or stomach legs straight. It was quite painful from this position. I went home had a bowel movement and was quite a bit of blood. Which never happened much in other sessions maybe a small spot on TP.

I called after and said you know I think you hurt me doing it with straight legs. She said no works with other patients I probably had internal hemorrhoids. Its been about 2 months since this visit and I've still had pain in the rectum passing stools, etc. Any thought if this PT caused damage? Guess I may have to get a Bhole exam to rule out hemorrhoid?

[HateCPPS]

I'm noticing while trying to build up to ejaculation it seems as if fluid is being pushed to the prostate from testicles but possibly not filling into the prostate. If I feel my testicles during sex, etc it feels like the epididymis is swelled up like a hard worm. It goes away after ejaculation but really feels like the epididymis is filling up like a balloon. Is this because the prostate is inflamed and the fluids have no where to go? Rather concerned I may hurt the plumbing down there.

[webslave]

Probably internal hemorrhoid as she states. If you're having pain, get it checked out. They can be treated.

Cannot comment on hard epididymis, but suspect that it is completely normal.