Webslave, guys.. pls have the time to read my story

[carbonevo]

Before I start, I want to mention that I am not a native English speaker.. so plz forgive me if I wrote something incorrectly.

Web slave, you da man here and I have been reading this page couple of weeks before considering posting here.. would really appreciate your advise, as I am kind of desperate.

Why I think my story is kind of unique (maybe not) is because ALL my CPPS started ONE morning.. I had absolutely no urgency, frequency or any problems with voiding that time, I simply woke up in the morning and felt as if some one literally stabbed me in my bladder/groin area (just above the pubic bone). It was not that painful so that I would rush to the ER or anything, but I had this feeling - "okay, this is strange, something is not alright..". I remember that day I stayed at home, rather than going to work.

Now this is how my journey with the pelvic pain started.. the pain subsided and I remember I went to work the other day.. absolutely no problems, I was fine and thought this whole thing was gone for good..

However, few days later the pain returned, yet this time as pressure in the bladder directly and sitting was a little bit uncomfortable.. my girlfriend told me she gets this feeling when she has UTI, and advised me to drink cranberry juice + some pills with cranberry extract, the pain subsided.. Few days later I was in the cinema and I felt the pain moved into the butt, like literally.. all the pain was concentrated in my rectum, this time I decided, alright time to see a doctor, I went to my GP - she prescribed me with atb and sent me home, the pain immediately subsided when I was on atb.

However in 1-2 weeks the pain returned, this time I started to be obsessed about the condition and started reading everything on the internet... this led me to prostatitis, especially that the pain in rectum was getting worse and was pretty much the only symptom I had. I was then referred to a urologist who confirmed prostatitis and gave me "norfloxacin".. the pain immediately subsided and I was 95% cured for more than a month - with occasional slight pain/burning in my rectum, however nothing serious at all.

Now how this turned into chronic state:
It was around May/2015 - Monday I went to the work after a great weekend during which I had zero symptoms, I remember the first thing I did I went to the bathroom and had once again this pressure in my bladder, as I was sitting in the office suddenly this pressure from the bladder moved to awful burning in my butt - it literally moved from the bladder to my rectum (kind of a spasm).

And since then I am struggling with this daily pain in butt condition..

I returned to my urologist who found this time chlamydia - altho I was not cheating on my gf and she was my first sexual partner, my gf did not cheat on me either, I just know that.. she's that kind of super attached girl.. so it's super mysterious to me till day. Anyways, the chlamydia was treated with strong dose of azithromycin and since then ALL the cultures were negative - however the pain persisted. No atb since the "sudden spasm" helped - not even a little.

How things become super confusing:

• Now, chlamydia is known to be causing urogenitary diseases, so it was a great candidate to be the reason behind all this havoc, however since clearing it with ATBx it was always negative, despite the fact I had the same pain.
• 2 months later I woke up with bad pain in my rectum, urethra, bladder, and I pee'd for the first time pure dark blood - went to the ER that time as the pain in my rectum become extremely bad -they didn't find anything on the Xrays.. sent me back home.. the pain subsided - but the ache in rectum presisted, basically it become my daily routine while sitting long in the office.
• 2 Months afterwards, the pain rectum become once again SUPER BAD - I once again urinated blood - this time literally red blood - within an hour developed an awful flank pain + the classic rectal pain however x 100 times worse than usually - was taken to the ER, and again NOTHING!!! I thot this is gonna kill me this time, the awful pain rectum and now horrible flank pain. Went to see another urologist, he said no way, there's gotta be something.. and sent me for CT scan, the CT scan revealed two kidney stones stuck just before the opening to the bladder, it took 2 surgeries to get them our (uretroscopy). My urologist told me, when you get those stones out you will be free of this as they are probably the reason behind my pelvic pain. Nope, the pelvic pain persisted even after extracting those stones : (...
• Since then I gave up on doctors and started searching for answers online.

My current state:

• persisting pain in rectum, buttocks and sometimes perineum - lately moving to my legs, specially left leg with some parathesia specially in my legs, but it moves around my entire body - the parathesia (tingling, numbness) started when I started taking Lyrica which did not do anything for my pain.. subsided when I stopped taking it - however did not subside entirely.
• I am generally a healthy guy, this condition doesnt cripple me or bed rid me like happened with some CPPS sufferers.. but it's super annoying and depressing.
• SITTING is my WORST problem, however there are days, when sitting doesnt bother me - specially if I am relaxed - not stressed out by work and general problems in life... during holidays or vacations I could drive a car few hours in a row and not feel any bad pain.
• Stress is a huge factor for me, a fight with gf or some stressful event and the pain becomes really bad.
• Running, hiking, and generally walking relieves pain - basically if I am not at work and not sitting for long, I'm more or less pain free.
• NO URGENCY/FREQUENCY issue at ALL. Only sometime bad pain after urinating - not during and little dribble - nothing serious tho.
• Sometimes really PAINFUL erections (arousals), however no pain during or after orgasm.
• Lately I am feeling that the pain moves more towards my left side.. with occasional tingling/ stabbing in the left side.. this did not happen before, the pain was all the time in the middle/center of pelvis.
• 2 Chiropractics told me that my body is abnormally sore - especially the muscles on legs and abdomen.
• Gonna start internal therapy - finally find one practitioner, its super hard here in Europe- Slovakia to find someone who does this type of therapies.

I DO NOT BUY THE THEORY OF HIDDEN BACTERIA (I had so much antibiotics that would kill and elephant - not only some hidden bacteria) and I am pretty sure my problem is NEUROMUSCULAR - (considering that sudden spasm). I think (not sure tho) that doing excessive kegels one month before the onset of symptoms + the stuck kidney stones, caused tightness in my pelvic floor. I fear one thing, that I had PUDENDAL NERVE ENTRAPMENT, however people with this condition are mostly crippled by it. However that's not my case as I can work and sit at work for 9 hours daily, but it's uncomfortable.

I thank everyone who took the time to read this long ass paragraph and would really APPRECIATE your opinion/advise.

[webslave]

Looks like you had a case of chlamydia that has gone but left you with CPPS, which is not that uncommon. An infection is one of the known triggers for this condition. You now have central sensitization, hyperalgesia, pelvic spasm and allodynia, so your journey to beat this must begin. Kidney stones are not part of this (you must drink much more fluid, make sure your pee is always light yellow).

[European]

Buddy, I am in the same boat like you (even more I am from same country)...Here are my remarks:

1. I think it is clear that your condition is neuromuscular (maybe psychoneuromuscular is even more precise). Spasm, trigger point, subsequent neurogenic inflammation and anxiety related perception are the key components, I think. I also started with this stabbing, unknown pain in suprapubic/pelvic region - day/two after prolonged sex there was pain which I never knew before. I was scared to death and started (pretty useless) investigation with my 2 urologists. They were pretty useless, unfortunately...My pain also waxed and waned before it became chronic. You need qualified physiotherapist.
2. I also had almost no urgency/frequency issues...(small dribbling after urination and weaker otherwise nothing). Some men do have urination problems, but most with pelvic floor dysfunction not.
3. Sitting is also aggravating my condition, but only when in uncomfortable conditions (e.g. few hours sitting in the meeting room in work, 3-4 hours of driving). Do not fear of PNE (you would have pain which is immediately after sit down...), although irritated pudendal nerve might play one of the prominent roles in this spectacle...Try to completely avoid bike/motorcycle, this might be dangerous for pudendal nerve.
4. Stress is HUGELY aggravating our perception of pain. I know it better than anybody. When I am relaxed, there is always some portion of discomfort/low level of ache, but a stress (travelling, interpersonal conflict) is always increasing the pain to unparalleled levels...Try to avoid the stress as one of the prophylactic measures, try to deal with stress with some of the cognitive-behavioural strategies...
5. If there is some pathology in the pelvis, Xray is useless, these structure are too delicate for Xray, maybe 3Tesla MRI is appropriate tool.

[carbonevo]

Guys, thank you so much for your inputs here! @Webslave, I did not have any symptoms of chlamydia, which is pretty common, I know.. BUT, how on earth would chlamydia cause this stab in bladder/pubic bone area - after which all this CPPS nightmare started, doesn't make much sense.. if I had burning in penis or discharge and then as result of that my pain worsened which gradually led to CPPS I would not argue, as this is a pretty classic onset of symptoms for CPPS sufferers. However, my pain started in ONE morning, literally, I woke up I felt a pain in my groin that never experienced before. Waking up with entrapped pudendal nerve ? sounds RIDICULOUS, I did not ride a bike in 15 years.. nor had any surgery in that area. Another thing, as I am typing this, I am more or less pain free and been sitting for good 2. 5 hours in the office - the only med I took in the morning was Elavil - which I've been taking the last 2 weeks.. so far didn't make any difference.. What freaks me out is that my pain always worsens after sitting - which is a classic symptom of PN. I'm just trying to calm myself that I do not have this : (

@European, I'm so sorry that you're going through this body! life with chronic pain sux hard, what helps me is reminding myself that there are people with FAR worse conditions than what we have.. at least we are not crippled by this thing and can maintain more less a normal life.. well, normal life with some bad pain -. -.. It took me around one year to realize that this condition is not prostate related but more of a pelvic floor dysfunction. Man I literally feel the muscles of my pelvic floor sore after long day sitting in the office. Thankfully, I found a physiotherapist in Bratislava who does the internal work.. have an appointment with next week, will see how things go.. I had two external work sessions with her and she told me that my abdomen and leg muscles are extremely sore, and she can imagine how screwed up my pelvic floor would be.. so that's another sign that there is something wrong with the PF.. I literally feel that I need something up in my butt loosening up things inside, been hesitant doing it myself - damn, I just realize how disgusting creatures we are lol Btw, thank you for the two contacts, seriously considering to see the guy in Brno as he's 1. 5 hour drive from here.. if you want I will share with you a contact on the clinic which I am attending currently in Bratislava.

[webslave]

CPPS often comes on suddenly. And sitting is the worst time for tensing pelvic muscles!

[European]

Carbonevo, thanks for the reply, I would be glad if you can share this contact in Bratislava (my home city), I was not able to find anybody qualified, all those PT were the classical PT without special knowledge of pelvis. This guy in Brno is highly recommendable, I am visiting him once monthly. I wll add some progress to my case, athough still struggling with problems.

[carbonevo]

European, thank you buddy! Definitely gonna see him.

Yesterday I had first session of internal therapy, damn disgusting -. - anyway.. she did work around my coccyx, where I have no pain at all actually.. but when she pressed on the muscles next to the coccyx there was definitely some painful spots (I guess trigger points?), especially on the left side but on the right side as well, then she tried to rub my levator ani muscles, however I felt that she's not that much skilled in this.. I just had this feeling, can't really describe why. She also tried to press on the pudendal nerve from inside, I did not feel any pain however. The other day after the treatment, I could sit 5 hours in a row with pretty much no pain at all.. I guess that means something? However, the pain towards the end of the day returned full force :/

Wanted to ask you, does tramadol work for you ? Man, 100mg extended release work like charm for me, actually I'm more or less pain free when I'm on this.. it lasts the entire day, I just don't like the kind of high feeling when I'm on it. If I fail all the other treatments I'm gonna stay on tramadol.. screw it, there are people who live on this daily and have a pretty decent life.. too early for this tho, there's a lot of work ahead of me, that would be really the last option.

Btw the name of the clinic is: fyzio.sk - it's located in 3 veze, Bajkalska 9.

[European]

Carbonevo, thank you for the contact, I might see her...but I definitely think that this PT guy from Brno is superior over her...he has a lot of PT experience from Germany and wrote a book about Coccyx pain syndrome...so definitely a go to guy...

I was also experimenting with Tramadol, but now I am avoiding it. It calmed a little bit down the pain but it always inflicted an extreme insomnia for me, so the next day after such sleepless night was always a true hell for me...I had better experiences with Clonazepam and Atarax. Of course, if the tramadol works for you, keep it taking. the risks are very low. Many men in pain do that regularly.

I was also speculating about PNE or some irritation of pudendal nerve, but the palpation of the nerve at Alcock channel as well as at dorsal canal was pretty painless and I had distal pudendal nerve block which did nothing. I am sure that this is NEUROMUSCULAR condition, and it is hard to sort out the muscular and neuropathic components aside...The only thing I regret that in the beginning, when I was maybe like you having pain on and off, I obediently ate antibiotics and did not find a qualified PT who might cure me completely. Now it is long and tough fight...Pretty depressed with the quality of life and neverending struggling...

[carbonevo]

I guess now I perfectly know what triggered my CPPS.

It was a kidney stone. In my story I told you that all this started one morning, I woke up with severe stabbing pain in the bladder/perineum. I had no clue what could it be, docs thought it was an infection, but infection usually would not cause this severe stab like pain. Also with an infection I would have burning pain and pain along the urethra, penis. In my case it was however more like a trauma, straight hit, not gradual. The pain subsided within few days, maybe because I passed the stone, however I seriously suspect that it started a process of clenching my pelvic floor and central sensitization, I made a mistake reading the internet and coming across CPPS and the horror stories, things sort of "psychosomatized" ... and my fear, anxiety and depression got me in a vicious cycle of chronic pain. Also the stupid urologists diagnose CPPS made it for my brain much more believable that indeed there is something wrong - hence feeding the cycle of anxiety and pain. That's why a success story about Sarno and Sarno's book helped me to get out of this mess, though not completely as I still suffer with relapses. I guess it took a part of my fear towards the symptoms which directly communicated to the primitive brain that things are ok, i am not in danger.

However it will take a while to get out of this mess completely as the brain/nervous system is still in fight or flight mode (basically aroused) hence I need to keep the stresses at minimum so that symptoms don't flare.

Why I am so sure now? because I passed a kidney stone few days back and it mimicked the old pain I felt when this started.

[webslave]

Seems logical

[carbonevo]

Hey guys, been a while, so I thought I'd give an update on my situation.

My CPPS disappeared. It doesn't exist anymore, no pain in the a-hole, no pain in the prostate, completely gone. Though I absolutely have no clue whether it will return or not. No idea. Lots of people post their success only to return later asking whether this or that will help. So I guess one can never say that he beat the beast for good. At this moment however I am free of CPPS. But not completely out of the woods, I'll explain.

My CPPS disappeared immediately after I passed another kidney stone. It took me 3 months to pass it. That's not the important thing, what is important that why the second kidney stone made my CPPS disappear.

I know for sure that my CPPS was caused by a misdiagnosed kidney stone stuck before the bladder's opening as prostatitis, it took the stupid doctors around 7 months to find the kidney stone and that was because I had a renal colic that landed me in the ER. After a surgery the kidney stones were removed but I was still left with full blown CPPS. I still had prostate pain, still pain in the butt while sitting and erection pain and I had no clue why I still have symptoms.

Let me explain my thoughts on this:

The doctors misdiagnose and my obsessive googling made this thing somatize, despite removing the kidney stone 2 years back the danger singal was not shut down, partly because I saw no correlation between the CPPS/prostatitis and Kidney stones. All I knew that the kidney stone would cause extreme flank pain that would land you in the ER. I had no clue that a stuck kidney stone can mimic prostatitis symptoms. So I was left for 2 years dealing with pain on and off. After reading about the mindbody stuff, things started to make sense but weren't sufficient enough to completely rid me of CPPS, I would go days or weeks without pain then stress would flare up the symptoms, they would always change, from prostate to butt, to bladder.

3 months ago my initial stabbing pain returned when I woke up, the same awful pain that started my CPPS journey, this time I immediately called my urologist to order a CT scan. Ofc it revealed a 6mm kidney stone stuck right before the bladder opening, I was miserable guys, the pain in the prostate, ahole and shooting electrical waves in the penis were awful! The uro told me to try to pass it on it's own and gave me Flomax, if it won't work then I'd need a surgery.

Took me 2 months to pass, once I peed the kidney stone ALL of the symptoms simply disappeared along with the classical CPPS symptoms.
What I think on this, is that the trauma caused the danger signal to be still open, I needed something to convince my brain that there is no more danger and then the pain would mean that it's bullshit, I finally found out what caused my CPPS and it was sufficient for the brain to shut down the danger signal.

Now the problem is that my pain moved from my butt/prostate/pelvic floor to my buttocks and legs, specially the left leg and I'm dealing with piriformis/ sciatica-like pain, nowhere as awful as CPPS, but still not pleasant to deal with, and works exactly the same way as CPPS, flares up during times of stress/ anxiety or emotional load.

Lately it's been attacking my left foot and knee, the sciatica/buttock pain disappears when I get the pain in knee and foot.

[SoraStar]

Hey carb!

Glad to hear you're feeling a lot better and I hope it stays that way and also hope you get to 100%.

The NP I saw when this all started thought I might have a Kidney stone too but never got tested for that, in fact I haven't got ANY tests other than the standard pee test.

I feel a new Uro on Monday and hopefully I'll get some tests finally to at least rule some really bad stuff out.

[carbonevo]

SoraStar, did they find any kidney stones?

An update on my case: going through a nasty relapse, CPPS has not much returned but the buttock/leg pain is really bad, it keeps jumping from a place to another, what also returned is IBS, after the diarrhea I do get symptoms that can be associated to CPPS as sore butthole/pelvic floor, but I guess this is normal with diarrhea, isn't it?

Also as the pain manifests in my buttock I feel that its attacking my left side of coccyx.

Distraction and swimming can take the pain away completely... but I need to get out of my mind completely... then it disappears. Tramadol helps really good, though it doesn't take ALL the pain away as it used to.

What's going in my life right now: not much stressors except change of projects and I will be working from Monday to Friday in London, on weekends back to Bratislava.. so lots of travelling, although I'm really excited about working in London I guess maybe unconsciously it's stressing me out. Other than that everything is just fine.