My CPPS Stories and Experience’s

[carbonevo]

Man you are pushing a bit hard...if you had good days and then it hit back, probably you experienced an extinction burst as Alan Gordon calls it.

Just go easy on it and accept the flareup... I know its hard

I advise you to read Weeke's book.. she explained the behavior perfectly, I posted the link on MajorSky' thread where you can find the audiobook for free.

[MajorSky1]

Been in your shoes, Chriss.

There used to be a threshold for me and if the pain went over it, I could not gain relief or control of it no matter how I tried to ignore it. I can be really rough. So, eventually, what I learned to do when the pain went over what I termed "the threshold" - I would just drop everything, and make myself as comfortable as possible. I'd sort of cocoon in bed and try to sleep, meditate, rest, watch netflix. Don't make yourself feel guilty for doing this. It's temporary.

If it was a super bad flare up, I might take a half a Xanax, or tramadol. But I would find myself getting stressed about drug after effects so I avoided them unless absolutely necessary. Over the months of having these flare ups, I eventually noticed they were getting shorter and I could wake up one morning and feel like doing stuff again, the pain would return to below the threshold.

At some point I was able to function during flare ups 90% of the time, and that's when I started to use the ignoring and pushing-through-it technique. For the initial period of this condition, while it was at it's worst, I found that you have to pick your battles. You'll know without a doubt when you're over the threshold and it's time to cocoon. And eventually you'll learn to see when it's time to give yourself a little push and get out and do stuff like walk, or go get groceries, or meet with friends. Then, after a while you'll notice the balance changes and you are having fewer threshold flares, and doing more things, even though you may still have some pain. And that's when you start to go heavier on the ignoring and pushing through the pain. You may still have occasional threshold flare ups, but by then you have proven to your brain that they don't last, and you just let them run their course, enjoy a good rest, and move on. It's a process. Like Carb said, just accept the flare up. And read or listen to that book.

[Chriss]

Thanks friends @Carbonevo/Majorsky1

I'd done Internal PT yesterday evening, lots of deep tissues taut band detected and treated by pressure and strumming method, most of taut band were in ischio coccygeous and ilio coccygeous muscles, also some taut band strummed in prostate levator muscle right/left.

My flareup is reducing very very slowly after internal PT. My coccyx pain is reducing very slowly.

Also I'm following your advices, thanks a lot for sharing your experiences, your supports is very beneficial and encouraging for me , I'm trying to do Dr Sarnos advices - my next book to read is Dr Weeks book -Hope and help for your nerves-too, hope to have recovery period soon

I have created a topic about transurethral Botox injection regarding lots of papers found in the web, would be grateful to share your ideas:

viewtopic.php?f=8&t=8650

[European]

Hallo Chriss,
I re-read thoroughly your story, there is a lot of similarities in my case (as well as in many other cases of co-sufferers). My case also started 7 years ago with prolonged sex/masturbation with a lot of clenching/edging etc...I have had very good September/October but since New Year I am struggling again. I know very good that feeling of despair when you are confronted with a flare-up after 8-10 good weeks...It is really debilitating.
My experiences of your proposed further treatment:
1. hypogastric plexus block - I had it in 2013, but generally nothing happened. Some days after block I felt some unpleasant sensitivity on the spot of incision of the block, but my familiar pain pattern never changed. So no flare-up (some patients reported light flare-up, then improvement), no improvement. my doctor suggested to repeat whole procedure once again or to try inferior hypogastric plexus block but I dont believe in lucky result so I refused.
2. In 2011 I tried this extracorporeal shock wave therapy and it was the biggest mishap during the whole my journey with CPPS...after one and only session I got big flare-up which lasted 3-4 months before my pain returned to baseline level...I have heard some similar cases, so I think that ECSW is not the way to go and might be dangerous in such delicate structures like pelvis! It is suitable maybe for tennis elbow but not for our highly fragile pelvis...
3. In 2012 I had distal pudendal nerve block under ultrasound guidance, placed in dorsal canal (which is more distal in urogenital diaphragm in pelvis), made by one of the best interventional radiologists in Europe. No change whatsoever - no improvement, I slightly felt some desensitization on the penile skin, but not the switch off of the familiar pain. Maybe pudendal block in the Alcock canal might be the alternative, but I am pretty sceptical, although my pudendal nerve is surely playing significant role in this havoc.

I had some improvement with lifestyle modification (swimming) and with PT. But the battle is not over. I will share more details in the thread of my case, soon. Don't despair, you are not alone.

[Chriss]

Hello European, thanks a lot for your story sharing, your story and signature are very similar to me, hope to find a solution. Some questions;
Do you have urethra stricture? Two stream split urination?
Do you have or do you feel inflammation in urethra or prostate?
What about Libido problem and ED? Its very effecting for me.

[MajorSky1]

I just want to say something about split stream urination. I have serious skepticism that in 98% of cases is caused by anything except a combination of tense muscles along the urethra so that the stream is slightly weakened and thus the little labial tissue at the meatus to get in the way of the escaping urine and making it split.
Worrying about that is only adding unnecessary stress on top of all the other things. RARELY is it truly caused by scar tissue.
Unless you had some kind of blunt force trauma to the urethra, or have been wading through the jungles of Viet Nam waste deep in stagnant, disease ridden water containing strange viruses and disease, you are wasting your time worrying about it.
Urologists love the split stream because it's usually harmless, but gives them an excuse to make sure.
If anything, it is just more physical evidence of stress.
I had it occasionally when my pain was at it's worst on and off over 1.5 years. It doesn't happen anymore.

[Chriss]

I visited a urologist 6 weeks ago and after verifying the history and cystoscopy, his diagnosis was non-bacterial prostatitis (inflammation (sensitivity) in urogenital and prostate). He prescribed me:

1. Hydrocortisone Amp. No. 4 one daily
2. MethylPrednisolone 5 mg tab. half morning-half night
3. Gentamicin Amp. No.4 every 8 hours
4. Doxycycline 100mg. one morning/one night
5. Tamsulosin 1 night
6. Vitamin E 500 mg 1 night

After internal physiotherapy (taught band/myofascial release) and after 2 days of usage the drugs, I reached to 80% relief of symptoms!!!
IT WAS VERY AMAZING AND GRATEFUL!..., experiencing of pain free after 7 years...!

But unfortunately after 7 days the pain came back ( From 80% relief to 20%)

I don't know why, but I think it was due to decrease of steroids (finishing of hydrocortisone injection)+Job Stress/Work+ (and coming back to the stressful life by considering that every thing is ok).

In the next weeks I was visited by urologist and he prescribed again these drugs but not Hydrocortisone: the pain-inflammation relief is about 20 to 40% fluctuation.

Has anyone any experience with steroid usage? It seems it can/may be helpful. Any idea or recommendation..?

[webslave]

As I've already told you, steroids do not have a durable effect.

Your urologist has tried "shotgun medicine" on you, and since you're also doing physiotherapy, it becomes impossible to say what caused the temporary improvement. I would not see that urologist again, in your shoes. Keep away from clowns who inject you with antibiotics.

[European]

I agree with webslave, try to concentrate to PT and relaxation. The battery of pills is obviously useless , there might be even some erratic contraindications etc. I know how desperate you can be, but the clear mind is essential. In cca 2012/13 I had 3 or 4 steroid shots into my pubic area made by my urologist, but despite some initial improvement it did not delivered anything substantial but some skin allergy...so I declined this option for the future. Stress is our major enemy and I have had many bad flare-ups induced/strengthened by stress...And every time I am confident enough that I had my stress events under the control, something surprise me and the debilitating pain wears another coat....

[scotcan]

Got to agree with the last 2 posts, if there were medication that could cure you (And everyone else on here) this forum wouldn't exist. It looks to me as if your Urologist is looking to treat the symptoms and not the cause, if the cause is not dealt with then the symptoms will persist.

I've been in your boat and wanted to believe that the bottle of pills I was prescribed would fix everything. I tried them and it didn't. I have a follow up appointment next month with my Urologist, who has already said he "might need to put me on medication", if PT didn't work. I'm going to refuse any and just keep going with what I'm doing - Just focus on the future and one day you'll feel better.

[Chriss]

Hi Friends, I have continued internal PT for past months, and my physiotherapist said me in last session that all the taut bands, trigger points and shortness of muscles have been treated in past 20 sessions of PT, I feel he is correct because I didn't have pain, flare up, jumping, like the first sessions, but at the moment I have high anxiety (more than the past) and I feel high level of burning, inflammation, itching and pain in perineal, prostate, and scrotum and also libido and erection problem while I'm taut band and trigger point free. Erection and libido problems are very disturbing me and create lots of anxiety. It seems that inflammation symptoms has separate mechanism from muscle problems and treating muscles problems does not remarkably affect inflammation symptoms.

It seems inflammation directly provoked by anxiety and nervous system independent of muscles,

What's your suggestion?

How can I treat inflammation of prostate which seems excited by mental and nervous system ?

I read in a post that Ashwagandha root helps some friends to alleviate pain as a result of anxiety.

[European]

Hallo Chriss, I know that feeling very well, I mean having inflammation pain without classical trigger points related pain patterns...I still have similar anxious ideas, because both of my PT failed to find some trigger points which would reproduce my main pain pattern (but I had positive effect from almost every PT session). The overall level of anxiety is difficult to battle, and I think this one of the most important factors keeping the pain alive.

My pain journey is almost exactly matching yours (7 years), my pain was on/off for the first 2 years, then after chronication I was never completely pain-free, despite having some really good 6-8 weeks periods, especially in the summer..

Back to your questions, I did not have urethra strictures, basically I don't have any urethra pain, my pain is more in the midshaft structures and penile base... But my urinary stream is often split on two...without having any urinary pain...

If I correctly remember, this split stream and urinary dribbling appeared cca 2-3 years before CPPS hit...maybe that was first subtle sign of pelvic floor dysfunction (which I obviously ignored...

[Chriss]

Hallo European

• I have visited today by a urologist (he has published some papers on CPPS). I was verified by rigid Cysto by him 3 months ago, he emphasized that I don't have any urethra strictures and my two split stream urination, deviated stream urination and some time little spraying urination is because of INFLAMMATION (not stricture)
• For my anxiety base symptoms he prescribed me relaxation and Amitriptyline 10 mg, 1 morning, 1 night
• Also he prescribed Selenium 200 mcg as prostate supplement

I will update you about the results,
Good luck

[European]

Chriss, I also have weak/split stream (not always), but I am sure that there is no stricture and this is a result of pelvic floor dysfunction. My problems started also as predominantely muscular dysfunction (feeling like having a knot behind the penis, more on the right side), nowadays the predominant concern is neurogenic inflammation (burning pain in whole perineum, genitals, pelvis etc.). Years of perpetuating of this condition took their toll. Despite of having had some better periods, my situation is very far from optimal.

[Chriss]

What about ED? It makes me crazy, low libido and ED ruined my life and worry me about marrying. I avoid sex and girls. I'm single and think about being single in future is very catastrophic for me. I don't know how to defeat the anxiety and worries about that. I've followed Paradoxical relaxations guides, but it seems not enough.