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 2 years and getting desperate 
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Joined: Tue Apr 12, 2016 11:55 am
Posts: 428
Post Re: 2 years and getting desperate
I read an abstract of a scientific study done that says E. coli can cause pain, acute or chronic, and when it's gone, the pain continues. It has something to do with the E. coli lacking O-antigen, which regulates pain receptor action, according to the study. If the E. coli has O-antigen, then it doesn't cause pain. If you're interested in reading it (the abstract, not the whole article), I'll post the link.


Sun May 20, 2018 11:07 am
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Post Re: 2 years and getting desperate
Hey bro you may want to get off the antibiotics course that has got you nowhere and take a look at bio-mechanical causes. I really feel from hearing your symptoms that you have restrictions in the pelvis. Seeing a pelvic floor therapist that can evaluate you would be great. In your case i'm pretty sure one specific area that is involved is the obturator internus, others may be involved too. You see I refer to it as area and not muscle because it's connected with fascia. So when you think of your body imagine a web and restriction in one specific area will pull on the rest. So one area restricted in your pelvis can effect the whole pelvis. The goal is to find the primary restrictions in your body. When the dominant restriction(s) is effectively eliminated, the body is able to readjust itself as corresponding restrictions in the chain self-correct. Self-stretching areas can not get rid of these restrictions it could make things worse. This is the way to go for you imo. Let me know how you're doing buddy.


Mon May 21, 2018 6:22 pm
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Post Re: 2 years and getting desperate
presto423 wrote:
What is the last abx you had? prior to one you're on now?


Hi presto423. Before Levaquin it was Azithromycin. My list of meds is in the first post.


Tue May 22, 2018 3:36 am
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Post Re: 2 years and getting desperate
Thanks all for your suggestions which I will raise with my Uro on Wednesday. My symptoms continue to worsen btw, pain is more and whereas a year ago I would have some minor relief for a couple of hours in the morning, now I'm in pain all the time. The only time I'm in anyway free is when I'm asleep. But even waking I am in pain. Apart from taking 8 tramadol a day, nothing at all has made any difference. Even the tramadol doesn't really reduce the pain, but just makes me feel a bit better about it.

As an aside to this. Something that really bothers me is scrotal pain, not something I read much about here. My scrotum is very red and really sore, like bad sunburn. It's that pain that spreads behind my left testicle to my anus, rectum, perineum and deeper inside - all on the left hand side. This is added to with stabbing and aching pain all around my left hand side - testicle, perineum etc. It's only recently I have had any discomfort on the right which is like a dragging, aching feeling and that started when I took finasteride. My skin in that area in very sensitive too, even soapy water makes it sting. And I still have never been given a specific diagnosis. I have no common prostate problem whatsoever.


Tue May 22, 2018 3:47 am
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Post Re: 2 years and getting desperate
I have pain nearly all the time too. I have discomfort (allodynia, paresthesia and dysesthesia) in my groin area and pelvis most of the time too. I also get burning / stabbing / aching pain after urination and defecation too. I've tried pyridium, but I get a headache from it and it turned my urine orange (which there is a warning for), and it stained the toilet seat because I have leaking problems. Naproxen and acetominophen only dull the pain or relax me to an extent that allows me to cope a bit easier. I'm in physical therapy, getting myofascial release and other expert massage that isn't helping some of the groin pain. It's reduced some of the perineum pain I think, and is loosening my tightness and tension in my legs, back, neck, and pelvis. I'm considering acupuncture. What other options are you looking into?

Have you heard of N-acetyl-cysteine? Did you try macrobid yet? One of the issues with antibiotics is the immune system can treat them like a foreign invasion, which could reduce or prevent their effectiveness. There's also bacterial biofilms that protect the infecting bacteria from medicines. Antibiotics are a dice roll for sure. Yet if they work, it's one of the quickest solutions.


Tue May 22, 2018 9:14 am
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Post Re: 2 years and getting desperate
Yes have been taking N-acetyl-cysteine for 3 months now (along with the Levaquin) and Bromelain. Also Pro-biotics, Vitamin D, B, Cod Liver Oil. Recently started taking Saw Palmetto, Stinging Nettle Root, Turmeric (Meriva) and Qeurcetin. No changes with any of those things though. No, I haven't tried Macrobid - in fact I've had so many different ABX now I'm loathe to try any more until it is 100% proven that it is exactly the right one to take. Next I want proper testing of any fluid I provide and in the mean time I'm going to go for the fungal meds, thank to Inflamed.


Tue May 22, 2018 11:47 am
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Post Re: 2 years and getting desperate
Here is one guy who got rid of the Enterococcus Faecalis on this forum

viewtopic.php?t=456

As you can see his symptoms were pretty mild though: redness after ejaculation, and infrequent tenderness in the perineum.

I've came across other cases of Enterococcus Faecalis in the prostate and symptoms are mild.

Your symptoms are so left side dominant and worse which imo warrants a look at that area by a pelvic floor specialist. All it would take is one appointment for an evaluation.

This person can evaluate the whole area and let you know what they find, could help with lots of your symptoms.

Just food for thought, I don't want to come off as trying to force something on you but just letting you know don't get into the thought process of this gut bacteria
being responsible for all your experiencing. There have been people who got rid of that gut bacteria from the prostate and still experienced no symptomatic relief as that
ended up not being the cause. Best wishes!


Tue May 22, 2018 5:22 pm
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Post Re: 2 years and getting desperate
Saw the uro again last week. Waste of time. He greeted me with “What do you want me to do?”. Erm, you’re the Doctor, you tell me! No empathy, no sympathy – didn’t even ask how I was. He then proceeded to pretty much dismiss everything I said or asked of him. I had a very detailed letter from a Microbiologist that made some very good recommendations. He read it and pretty much ignored it, but did manage to bring up old information that had been sorted out in the past (do these people even read the notes on file beforehand?). It seemed that he couldn’t wait to see me out. I’ve seen 6 Urologists in the last 2 years and bar one they’ve all been pretty poor when dealing with CPPS/Prostatitis (is this the norm for UK uros?). He wouldn’t/couldn’t prescribe anything and told me to go back to my GP, same as when I mentioned PT referral. My wife was with me and she couldn’t believe how poor the service was (she has recently had some major eye surgery and her treatment was amazing from her consultant). I was so annoyed at the time, still am, but at least I didn’t lose my cool with him as I am known to get very mouthy in situations like this.

So, I’m left with a Ganglion Impar block 21 June. After that, this uro will see me again and then possibly go for a cystoscopy/prostate massage under a general. I am seriously thinking of paying a private Urologist – anyone knows of a decent one in the NW of England?

I went to my GP yesterday and I asked him for Diflucan. He has prescribed itraconazole for a month.

Can anyone recommend somewhere in the UK that can do decent PCR testing. I don't care aboput the cost and I've googled around, but unsure.


Thu May 31, 2018 4:54 am
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Post Re: 2 years and getting desperate
So, an update. I convinced my GP to try me on Itraconazole for a month. Finished these last week - no difference. I also had my Ganglion Impar Block 21 Jun. That's another thing that I can add to the list that hasn't helped at all. Even with the initial local, the pain was still there. More worryingly though was that a couple of days later the the pain intensified to such an extent I felt physically sick. That has died down now, but I feel no different than I did beforehand, maybe a bit worse to be honest. I see my urlogist on 04 July, but I'm really not holding out any hope whatsoever. He still wants to give me a cystoscopy and prostate massge under a general anaesthetic. I will likely be going back to pain management in a few months - I suppose the next thing to try would be a pudendal nerve block, but I'm speculating there.

I've increased my Tramadol intake to 8 a day now - I could just manage on 6 before. I supplement that with 1200mg of ibuprofen, paracetamol/co-codamol. With that concotion I can just about cope, but life is pretty dismal these days and God knows what is happening to my liver.

My wife and I have booked a holiday later this year but I'm a bit worried. Moving and travelling is the worst for me, but it's unfair to her to never go on holiday again. And it's exactly 2 years now since we last had sex; she has been very understanding in that respect, but I can't let this carry on anymore.


Tue Jul 03, 2018 6:26 am
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Post Re: 2 years and getting desperate
Lux_d, I can relate to your frustration with the Urologists. its the same here in the states, try every pill they can prescribe first and send you on your way. least yours were willing to run bacteria tests.i couldn't even get that. also found going into doctors office and telling them what you wanted was a quick fire way to shut doctor down.....treated me like I'm a pill popper.(yeah antibiotics are THAT good) smh...

anyway.. Do you have a copy of your MRI? like a disc you can look at on your computer.. since your right side seems more or less pain free, you might compare left and right lower abdomen scans and just see whats different.. my pain in my lower abdomen was one sided only, and could easily see swollen seminal vesicles on my left side. I ended up carrying pics and entire scan from doctor to doctor, finally found surgeon/urologist that agreed with me and did several procedures that have (knock on wood) 85% cured me..

I agree with MrPK that you have some type of restriction in the pelvis, obturator internus seems to fit your symptoms and u may be able to see that on MRI..his recommendations seem spot on

might google " MRI-guided percutaneous chemomyolytic treatment of the left obturator internus muscle and chemoneuroplastic treatment of the pudendal nerve"

I would also start seeing your pain specialist more to work on your inner workings and LESS urologist. that is if u cant find a pelvic floor specialist close by.. my pain specialist/chiropractor does acupuncture which i reluctantly found....works..quite well.


Fri Jul 06, 2018 12:01 am
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Post Re: 2 years and getting desperate
magnagreg. Thank you for the input. Some great points there for me to chew over. I saw the Uro the other day and I convinced him to delay the Cystoscopy and massage until I've seen the pain people again, which will be in a couple of months. The pain doctor did say to give the impar block upto 2 months to take effect - so I used that argument with the Urologist. The Uro doesn't seem to know much about this anyway, so maybe that's because it's rare or they simply have no idea how to treat apart from ABX - which I 've taken so many of so far. I do think I need better testing though and I may do one of those online tests (anyone know of a good UK one?)

I will ask for a copy of my MRIs too. I don't think they could withold it in the UK anyway under data protection rules.

Thanks again and anyone else I've not thanked. I do read all the replies.


Fri Jul 06, 2018 7:05 am
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Post Re: 2 years and getting desperate
Hi again. No further forward. Just awaiting my appt with the pain management clinic next month. Anyway I thought I'd post this letter from a microbioligist after a query from my GP. He basically wrote to them after I gave him a list of abx I wanted to try (Vanco, Linezolid, Fosfomycin etc). I can't fully decipher it I'm afraid. The 2 references are just 2 articles online that I haven't got copies of any more as my uro took them (I doubt he's read them though). Not sure why Erythromycin is mentioned - I've never taken this or mentioned it to anyone. I have only so far taken Ofloxacin, Augmentin and Levafloxocin. Polymorphs? Does that mean WBC? When my uro read this letter he took it that I don't have an infection. Really, despite 4 samples showing EF!

Cheers.

Many thanks for your letter dated xxx, 2018 which I received today.

I am enclosing two extremely useful articles which should be helpful for this patient's further management. Regarding the antimicrobial treatment, Vancomycin does appear to have good penetration to the prostate but would have to be given under the care of Mr. xxx via the Commit Service. Mr. xxx could also prescribe the 3rd line treatment which could cover the alternative treatment in this patient's case which are Amoxicillin or Linezolid. There is limited information regarding the efficacy of Fosfomycin for enterococcus species and I was not able to find a dosing regime for its use in prostatitis. However, it is important to consider the possibility that the chronic perinea! pain is non-infective.

The most recent sample also is mixed coliforms but this continued to be sensitive to Ciprofloxacin if enterococcus faecium is not reliably sensitive.

However I note that at no time have there been any polymorphs in the semen samples. It is important to consider whether the diagnosis of prostatitis is correct and consider other possibilities for chronic pelvic pain syndrome. I do not have the benefit of any MRI examination so I cannot comment on the presence or absence of prostatic abscess. However, as a final comment, please note that the duration of antimicrobial duration of treatment for this condition could be 4 weeks minimum.

Regarding his previous therapy the Ofloxacin course would have been effective. Augmentin would have been effective against enterococcus facaelis but not any of the gram negative isolates Erythromycin was not tested for, it is sometimes effective against coliforms but never against enterococcus. I would not use this particular agent given the enterococci recommendations of management, it may be worth discussing with GU Med if they have any specialist counselling service.


Mon Aug 20, 2018 3:31 am
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Post Re: 2 years and getting desperate
Hi Lux,

If you go the vancomycin route, read up on it's kidney side effects before you do. Iirc, there's another drug called Teicoplanin which should work and seems less harmful, but it's only available in Europe I believe. You would also need to check the prostate penetration.


Mon Aug 20, 2018 11:12 am
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Post Re: 2 years and getting desperate
So. Back from the pain management clinic. Not much to add really. I mentioned the obturator internus and pudendal nerve. But the Doctor pretty much dismissed those as my symptoms don't fit. I disagree as when I searched for "MRI-guided percutaneous chemomyolytic treatment of the left obturator internus muscle and chemoneuroplastic treatment of the pudendal nerve" the first site that came up, the guy had the same symptoms as me (I even showed him the site on my phone but didn't want to look). Anyway he did agree to a PN block and put me back on amitriptyline. This time building to a higher dose and for longer than a month. I asked him for different antibiotics (Linezolid, Fosfo or Moxi). As expected he woudn't give me them. So off to see the Uro on 26th Sep. All in all everything is on par - going nowhere fast. Oh yeah almost forgot. He is referring me to a clinical psychologist - not really sure why.


Mon Sep 10, 2018 11:34 am
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Post Re: 2 years and getting desperate
Lux_d,

I suggest you don't go to the clinical psychologist. A pelvic floor physiotherapist tried to coerce me into going to one by saying she wouldn't treat if I didn't go. I told her no still, and she said she wouldn't treat me. So I left. I know your situation is different, but it's a protocol they are supposedly bound by that you don't have to follow. Most likely they'll try to put you on anti-anxiety / anti-depressant drugs and call for a dozen or so visits to the psychologist to talk through things. They may also attempt to cut you off from seeing other doctors or trying your own solutions. Most likely a huge waste of time, money, and effort. A major distraction from getting to a solution, in my not so humble opinion. Don't give the pain doc the BOTD. Not worth it.

The same physiotherapist initially said she could tell it was something to do with one of my pelvic innervating nerves, mainly either the pudendal or another one. After not even a full number of visits via insurance coverage, and lots of wasted time and her being late for my sessions and ending them early, and getting me to walk on a treadmill half the visits, she said it wasn't those nerves and used her coercive line of "go to the counselor or I won't treat you". That's when I knew it was time to stop, drop, and roll.


Mon Sep 10, 2018 3:32 pm
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Post Re: 2 years and getting desperate
So. Saw my uro again last week. We decided that I'll go for a cystoscopy and prostate massge to collect fluid for testing. I'm still awaiting an appt from the pain management for a pudendal nerve block and I've not heard anything back from the clinical psychologist. My uro is now willing to give me Linezolid (Zyvox), as it turns out it was one of the named ABX that was highlighted from my semen samples - no idea why this has only just been noticed. He can't precribe and a letter is (hopefully) going to my GP for him to do it. Last time that happened I had to wait a month for a prescription due to admin cock-ups.

I've nearly done a month on a high dose of amitriptyline now, but I've not noticed any changes at all.


Tue Oct 02, 2018 5:57 am
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Post Re: 2 years and getting desperate
OK, a small update. After yet another admin cock up I eventually got my prescription. I'm on Linezolid for 2 weeks from Monday gone. If I feel any difference at all I'll try to get it extended to a month. I finished the amitriptyline too, ended up on 30mg a day. At first I thought it wasn't doing anything but as I got to the end of the month I think the pain may have been slightly more bearable - only a very small edge though. Someone from the pain management clinic was supposed to call me regarding the effect of the amitriptyline. No one did though. The problem is, however, I can't take amitriptyline and Linezolid at the same time, but more worryingly than that is I've had to come off the tramadol. Surprisingly I've not had any withdrawal symptoms (was 6-8 tabs daily) but the pain I'm getting is horrendous. By the end of the day I am in agony. Maybe this worse pain is due to the abx rather than coming off tramadol. Mornings are better and I can at least get to work, but by lunch the pain is intensifyng. Paracetamol and Ibuprofen do virtually nothing and I can't take tramadol for a month whilst on linezolid. This next month/6 weeks is going to be awful.

I was looking a the Pudendal Hope website yesterday and I am starting to sway back to my problems being nerve/muscle related again. I don't know if anyone here knows the Nantes Criteria for Pudendal Neuralgia, but I absolutely fit in with that. I've had a Ganglion Imapr Block and that did zero for me. I'm a bit annoyed as the pain management doctor says it can't be PN/PNE as I haven't got any numbness - I did mention the Nantes criteria to him though so maybe he'll look into it more. I got a letter recently saying that there is a huge waiting list for pain manangement treatments and I'll have to wait but I am at least going to have a Pudendal block despite the doctor's incorrect assumption. Also, still awaiting a Uro appointment for a cystoscopy and prostate massge under a general anasthestic.

So this is my take on the Nantes Criteria as it applies to me

ESSENTIAL CRITERIA FOR THE DIAGNOSIS OF PUDENDAL NEURALGIA BY PNE
Pain in the Territory of the Pudendal Nerve: From the Anus to the Penis or Clitoris - YES*
Pain is Predominantly Experienced While Sitting - YES
The Pain Does Not Wake the Patient at Night - IT DOESN'T
Pain With No Objective Sensory Impairment - IF I UNDERSTAND THIS CORRECTLY, THIS IS TRUE TOO
Pain Relieved by Diagnostic Pudendal Nerve Block - NOT APPLICABLE YET

COMPLEMENTARY DIAGNOSTIC CRITERIA
Burning, Shooting, Stabbing Pain, Numbness - YES, BUT NO NUMBNESS
Allodynia or Hyperpathia - YES TOUCH (CLOTHING) MAKES IT WORSE
Rectal or Vaginal Foreign Body Sensation (Sympathalgia) - YES DEFINITELY
Worsening of Pain During the Day - YES DEFINITELY
Predominantly Unilateral Pain - YES - LEFT HAND SIDE
Pain Triggered by Defecation - YES - NOT IMMEDIATE
Presence of Exquisite Tenderness on Palpation of the Ischial Spine - N/A
Clinical Neurophysiology Findings in Men or Nulliparous Women - ??

EXCLUSION CRITERIA
Exclusively Coccygeal, Gluteal, Pubic, or Hypogastric Pain - NO
Pruritus - NO ITCHING
Exclusively Paroxysmal Pain - NO
Imaging Abnormalities Able to Account for the Pain - NO

ASSOCIATED SIGNS NOT EXCLUDING THE DIAGNOSIS
Buttock Pain on Sitting - NO
Referred Sciatic Pain - ??
Pain Referred to the Medial Aspect of the Thigh - NO
Suprapubic Pain - NO
Urinary Frequency and/or Pain on a Full Bladder - NO
Pain Occurring After Ejaculation - SLIGHT
Dyspareunia and/or Pain After Sexual Intercourse - SLIGHT
Erectile dysfunction - NO
Normal clinical neurophysiology - NO PN SYMTOMS SHOWED UP ON MRI SCANS

*I've also been studying the path and innervation of the pudendal nerve and it certainly branches (left hand side for me) to the areas I have the pain - anus, distal urethra (penis tip), deeper in anorectal region, scrotal skin (not testicles or epididymis). Whatever is causing this in me and the reason for this horrible pain (be it infection, compression, entrapment, injury) I'm believing now it is pudendal related.


Wed Oct 17, 2018 4:59 am
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Post Re: 2 years and getting desperate
Thanks for sharing, Lux. I have lots of the same symptoms that you answered yes at in the questionnaire you posted. I think mine is also pudendal related, especially in regard to where the nerve crosses over from the right to the left (since I have had pain in both sides, and it has switched at different times from primarily one side to mostly the other). I've also had a pain referral that's consistently around the areas my pudendal nerve innervates.

There are one or two other nerves that branch in the pelvis, but I haven't looked at those thoroughly enough yet to think much on it. Do you ever get a sharp, burning pain in your glutes? I have it occasionally, and was getting it more often while going to physical therapy. Have you looked up vasoconstriction at the capillary level? I've read it can produce nerve pain via the sudden expansion of capillaries, which then pushes or irritates surrounding nerve fibers (most likely the smaller/smallest branches and nerve endings). It's one of the primary causes of neuropathic pain. One place I read about it was in an abstract of a journal article that discusses thermobalancing therapy.

I think it is more likely that your going off the tramadol has resulted in increasing pain over a whole day than the abx. Tramadol has an additive effect, so it builds the more you consume, similar to anti-anxiety drugs or replenishing a nutrient there's a deficiency in. Yet, abx are known to cause problems, so I see how you'd suspect that too. My thought is if it's not building, then it's being depleted cumulatively, and resulting in the actual pain levels you're at without taking it over a day. Another idea is stress levels are often highest at night, especially in anticipation of another day of pain. I don't intend to confuse or mislead you. I don't work, and my pain levels are high at different times of the day. It could also have something to do with weather conditions. Humid weather often exacerbates my pain. Low air pressure with low temperatures is also an irritative combination.


Wed Oct 17, 2018 10:49 am
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Post Re: 2 years and getting desperate
presto, thanks for the reply. A quick response to your question:

No, never had a glute pain. Mine seems very focussed, in the morning I can identify the exact location of the pain (about 1.5 inches left of my anus and up 1 inch, almost aginst the inner bone of my pelvis). By the end of the day it has spread and becomes a painful mess in the places I've mentioned. Never heard of vasoconstriction at the capillary level - I'll research that thanks.

I understand what you say about stress being a possible cause. In my case I think not though. Now that I'm not on pain relief of any worth my pain levels increase like clockwork. Even as I write this at 1045am I'm getting to the point where it's going to be at the near maximum (that hits around 6pm). In fact there are no factors that I can identify that make things any better or worse, except the sitting, standing, laying down.

May I ask what pain relief you've tried and what you think works? You may have read my list of meds earlier in this thread and I've had all of the obvious ones only to a max of one month though. The only thing that has made any difference was tramadol (maybe amitriptyline if I took for longer). I've also tried various stretching/yoga exercises, but I can't feel any noticeable effect from these.

Thanks again and if there is anything I can do to help or advise you or anyone else with this horrible condition, please just ask.


Thu Oct 18, 2018 6:54 am
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Post Re: 2 years and getting desperate
Lux_d,

Thanks for replying. I read your initial post that started the thread before, but haven't again. I'll read it again soon. As for pain relief that works even somewhat effectively, I usually have naproxen (660 mg. 1-2x per day, an as needed basis, but I try not to take it too often) or acetominophen (1000 mg - 1500 mg once per day, twice if needed). I also was in physical therapy getting myofascial trigger point release and massage, and they had me doing yoga exercises too, which usually exacerbated pain or at least didn't help for more than 15-20 minutes. The pelvic floor physiotherapist I went to also had me doing yoga exercises (pelvic bridges, cat stretch, etc.), which involve tightening my abs and pulling my gut in while pressing my back to the ground or table and also one where I lift my pelvis into the air while pulling my gut in. I think those are some of the worst exercises to do in a case of prostatitis / CPPS since they agitate the nerves and are too intense for the muscles in the area of the pelvis since those muscles are so tight/tense and weak, at least in my condition. I don't understand why they think it wouldn't do damage or cause more pain and tension to do those exercises in my condition. At physical therapy, I got more relief from being stretched (hip flexors, hip adductors, calves, glutes, and other muscles of the pelvis) and from basic massage and trigger point release, and also from electrical stimulation, than from any exercises they had me do, including riding the stationary bike. I had to push a bit and reiterate that it causes me pain to ride the bike before they finally relented and stopped having me do it. I also get relief from walking around the house for a few minutes or so every 1-3 hours, but it's not full relief all the time. Same with most things I do for relief. The only full relief I getfrom the pain is hot bath or shower, laying in bed to rest or sleep, and for an hour or two from the pain relief meds (naproxen, acetominophen, and I also take ativan 0.5 mg twice per day). Ativan is a muscle relaxant, and I initially took it for panic attacks, but it helps most of the time in relieving pelvic pain. The worst time for me is usually in the afternoons and early evening too. Occasionally I get intense pain in the morning, and shortly before going to bed, but it's nowhere near as often as the intense pain I get in afternoon and evening. I don't work currently, so I get bored quite frequently, which I think is an influence on pain levels and my ability to cope and relax. The other things I've tried for relief are:

hot epsom salt bath (about the same as a regular hot bath)
quercetin pill (a little relief)
bee pollen extract pill (not sure)
eating fresh, raw mint leaves (made it a bit too cold down there)
biofreeze (rubbing on my perineum; worked for a half hour or so, then felt like a sprained perineum or something, don't advise it)
icyhot and tucks (rubbing on my perineum, about the same as biofreeze yet less intense)
heating pad (sitting or laying on it, somewhat relieving)
cold pack (sitting or laying on it, somewhat relieving)
a fluoroquinolone antibiotic (ciprofloxacin or a similar one) 5-6 days, felt like I was getting the flu, so I stopped
modifying diet to reduce inflammatory effects (I think this has helped reduce higher intensity pain some of the time)
cranberry juice (not sure, could be a relief)
coconut oil (rubbing it on my perineum, similar to biofreeze effect with much less subsequent pain)

I've several basic urine tests, all of which came up negative for bacteria/infection, and one of which was high ketones and 5.5 pH. I have Medicaid insurance, so I'm not able to do certain things in regard to testing that I can't afford, such as the DNA sequencing test that's at least $200+ for one sample. For a long time, I mostly only had perineum swelling and pain. For a year or so, actually. Now I have penile pain, perineum pain which is more intense than back then more often, and I've had a number of inexplicable pains in my legs, arms, neck, back, and now a chronic pain in my head that I never had before. The physical therapists were able to mostly get rid of a constant tension headache I had in the back of my head. Now the pain I have is above my ear and a bit back on the right, always on the right, and almost always feels like it's concentrated at a point about 1-2 inches in diameter. Massaging my temples or the sides of my head helps relieve it while I'm massaging and for a little bit after, but I can't sit and massage my head all the time to prevent it from returning. That's most of my pain problems. The other aspect of it is the nerve dysfunction and hypersensitization, also known as paresthesia, dysesthesia, and allodynia. Before all this, I was a bit overweight by age 25, but didn't have chronic pain or chronic neuropathy. I had migraines almost weekly when I was in high school. I'm also diagnosed by my PCP with hypoalphalipoproteinemia, which means my body doesn't produce enough good cholesterol. One time it was measured at 3, when it needs to be at 30 at least. Triglycerides are also usually high, but bad cholesterol is usually kind of low. I've done quite a bit of research and haven't come to any complete or guaranteed solutions.


Thu Oct 18, 2018 2:48 pm
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Posts: 20
Post Re: 2 years and getting desperate
Chronic Prostatitis is so hard to get rid of because the bacteria creates a bio film that acts as a glue to hold itself to the cell walls of your body parts. The bio film creates a hard shell that hides the bacteria and prevents your body from attacking the invader. Your going to need to get Serrapeptase which is a enzyme created by a silk worm for escaping the hard cocoon it puts around its body. When it needs to leave it creates this enzyme that breaks down any tissue that is not alive. Anything alive will not be affected but bio film in your body will have its structure broken down and this allows the body to attack the bacteria. I would also take colloidal silver to attack the bacteria.

I started taking Serrapeptase in mid August of this year and had good results. I got up to about 1 million SPU which is a high dose. It can make you herxheimer react and you might feel lethargic and feel weird anxiety. This is the toxic stuff the dying bacteria create. Then I went down to one pill of 120,000 spu a day thinking it would be enough but the pain came back and just the last week I was forced to go back to the 1 million SPU. My pain in my testicle has dropped almost over night but I do feel lethargic now and easily annoyed and some anxiety.

It is worth it to get the pain down. Look into Serrapeptase. It is wonderful stuff that I was told about by some US Military guys. They told me people are taking this for deep hard to get rid of infections. The medical industry is not promoting this because honestly they make money by treating the symptoms of illnesses. Big Pharma does not make money by curing anything. Cures are kept for the connected and powerful. The little people are used as a economic resource.

Colloidal Silver and Serrapeptase. Do it. It your having no relief you must try it. You do not have anything to lose.


Tue Oct 23, 2018 10:26 am
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
presto423,

Thanks for the comprehensive reply. Sorry I've not come back sooner, I've been away for a while.

The only thing I've tried that has any impact at all is Tramadol (maybe amitriptyline too). Naproxen does nothing for me, or ibuprofen and paracetamol. As you, nothing physical has helped me. Other
things that are commonly tried I think I've done them all. I.e. Quercetin, bromelain, saw plametto, colloidal siler, serrapeptase blah, blah, blah. I'm not wasting my time or money on any of those
things anymore.

Your other symptoms sound awful, I'm sorry. I can't relate to any of those at all - my problem is very specific to one area.

Next week I'm booked in for a cystoscopy and prostate massage. Under a general though - my first one ever which I'm dreading tbh. I think the uro has nothing else he can think of to try, so I'll see
what comes of that. At least he is expressing prostatic fluid for analysis. But my opinion is semen is better as it comes from the prostate - and other places. If I have eneteroccocus again, then at
least I know it's the prostate. If not I'll ask for another semen analysis. If that is then showing eneteroccocus then it's coming from somewhere else.

I finished the linezolid (zyvox). As expected, no improvement, but even worse pain. But likely that's been caused by coming off the tramadol. I still have to wait another 2 weeks before I can take the
tramadol again.

Still waiting for the pain management clinic to give me a date for a pudendal nerve block. That could be some time as they're maxed out. That's the NHS I suppose.

Again thanks for the response, and me, well I'll keep plugging away - though I'll be running out of things to try soon.


Mon Oct 29, 2018 8:07 am
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Gurgi wrote:
Chronic Prostatitis is so hard to get rid of because the bacteria creates a bio film that acts as a glue to hold itself to the cell walls of your body parts. The bio film creates a hard shell that hides the bacteria and prevents your body from attacking the invader. Your going to need to get Serrapeptase which is a enzyme created by a silk worm for escaping the hard cocoon it puts around its body. When it needs to leave it creates this enzyme that breaks down any tissue that is not alive. Anything alive will not be affected but bio film in your body will have its structure broken down and this allows the body to attack the bacteria. I would also take colloidal silver to attack the bacteria.

I started taking Serrapeptase in mid August of this year and had good results. I got up to about 1 million SPU which is a high dose. It can make you herxheimer react and you might feel lethargic and feel weird anxiety. This is the toxic stuff the dying bacteria create. Then I went down to one pill of 120,000 spu a day thinking it would be enough but the pain came back and just the last week I was forced to go back to the 1 million SPU. My pain in my testicle has dropped almost over night but I do feel lethargic now and easily annoyed and some anxiety.

It is worth it to get the pain down. Look into Serrapeptase. It is wonderful stuff that I was told about by some US Military guys. They told me people are taking this for deep hard to get rid of infections. The medical industry is not promoting this because honestly they make money by treating the symptoms of illnesses. Big Pharma does not make money by curing anything. Cures are kept for the connected and powerful. The little people are used as a economic resource.

Colloidal Silver and Serrapeptase. Do it. It your having no relief you must try it. You do not have anything to lose.


Gurgi,

Thanks for taking the time to add to this thread. I appreciate your explanation and I'm happy for your improvement. In fact it makes sense what you say about biofilm. However I have previously
taken colloidal silver for 2 months, along with serrapeptase. Quite high dosages as well. Unfortunately they did absolutely nothing for me. I may as well have drunk water. I'm leaning more to
nerve issues in my case now. I've taken so many abx and a myriad of different supplement type products and not one has done anything.


Mon Oct 29, 2018 8:08 am
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Joined: Wed Oct 24, 2018 6:46 pm
Posts: 31
Post Re: 2 years and getting desperate
Hi Lux_d:

My first attempt to respond to this post doesn't seem to have survived... grrrr… so here we go again...

I'm new to this particular forum, and am not a medical doctor, merely a fellow 49-yr-old, dare I say 19+ year sufferer.

My problems likely started w a UTI in my bladder that spread to the prostate. I suspect that either the ABXs taken were the wrong ones, or taken too late, to prevent the initial infection to the prostate. My prostate became swollen and boggy/droopy, which made it painful to walk w/o scrunching it in pain. Also had all the usual symptoms of urgency, frequency and pain in the perineum. 2x6-week courses of Cipro and another quinlonine ABX, and the swelling was completely gone, but the pain remained. A cystoscopy ruled out any serious bladder issues, and did reveal redness in the urethra near prostate area, but is otherwise a useless test.

This condition has waxed and waned over the years like a Sine curve, but did gradually reduce a bit in terms of intensity and degree of flare-ups. My only saving grace was 650mg enteric coated ASA (1-4 pills per day depending on severity) and a red air-filled donut cushion (I go for the larger size) avail at Shoppers Home Health Care. Although I have had periods of time-off from work (including recently), I have for the most part learned to sit very anxiously and bear the pain. Thankfully, I could bear sitting in a movie theatre w/o my cushion, as well as most meetings. My pain only became unbearable after very prolonged sitting, or the occasional bad flare-up (due to eating or drinking something I shouldn't inadvertently, or sometimes w/o a known trigger) requiring 3-5 days of rest. For many years, I was only able to pee while sitting - did have a few years where I had enough pressure to stand and go - and now sadly back to sitting. Since you are in constant pain, it's very hard to know when you have to pee, so you tend to go by the clock say every 3-4 hours or so.

Though you probably know all of this, it bears repeating: avoid stress (a killer but hard to avoid), alcohol (occasional beer followed by some water is ok), spicy foods (deadly), caffeine (decaf coffee/tea is ok). Drink lots of water (if you are dehydrated, it's harder to pee, and inflames the prostate). NAIDS galore. Ibuprofen and Aleve didn't do much for me. ASA and Tylenol work somewhat. Hot sithz baths (w or w/o Epsom salts) and a massage (see Naipo cordless massager on Amazon) provide temp relief at best. I've tried every supplement out there: saw palmetto, broccoli juice protocol, Prosta-Q, several generic general health prostate pills, cranberry juice (helps women not men), selenium, Omega 3/6, multi-vitamin, zinc, magnesium, pumpkin seeds, tomatoes and tomato sauce, apple cidar vinegar w the muther (horrible stuff, unless you take it in pill format which I didn't know about), yada yada yada the list goes on. I am now trying Oregano P73 oil, D-Monnaise & Cranactin, and a few others recommended by a 25yr sufferer (see his 21 cures book on Amazon), albeit he had ultimate success w silver nitrate and/or hydrogen peroxide/GMO?/salt-water irrigation, prostate massage, and microwave therapy. A few veterans out there also recommend taking colloidal silver (likely same as silver nitrate) orally, like you did. Some folks have had success w injections done in China by Dr. Song (who avoids anal puncture), others w Dr. Bahn in Cali (injections pass thru the anal canal - at lesst he is honest and says 75% of patients have a 75% reduction in symptoms). If you have a partner who can perform a limited prostate massage, this provides some temp relief. Have had a few uros and taken some ABXs on occasion if flare-ups get really bad.

Early on, I visited Dr. Curtis Nickel in Kingston (the supposed guru in Canada), but his assistant was unable to get a prostatic fluid sample, and at that time they were in the midst of doing Cipro ABX studies (and I wasn't a good candidate, cause I had already been on Cipro w/o permanent success), and I was not impressed by the fact that Curtis spent only a few minutes with me after driving 2 hrs to get there and waiting to see him. Today, his clinic boasts an 80% cure rate, but I think this is dubious.

Recently, I tried Ilia Kaploun at the MSH Koffler Centre (tad cheaper than his private clinic but takes longer to get in). He's an ok guy once you get to know him, and genuinely wants to help. After spending $500 or so on the tests/ultrasounds (first time any uro did this!), they detected calcification (stones) in the prostate and 2 common bacteria (I don't recall their names, likely mycoplasm?, not ecoli, doc figured I have more than 2, they just can't detect them all) and then 3 months of occasional prostate massage (massage, no, it's more like complete drainage and hurts) and several courses of multiple ABXs and a few supplements to improve penetration/efficacy later, and I was no better off than when I started (despite seeing a vast reduction in white puss cells in my prostatic fluid over that time). In fact, my condition MAY have gotten worse as a result of this arduous process, so I do not recommend it ligthly. I was off work for 9mos (it took 3 mos just to get an appt and test results w Illya - they try to turn you away once you've seen a rookie uro at MSH but I persisted), 3 mos of painful but bearable treatments, and 3 mos to recover. Came back to work for a few mos and now faced with needing to take a longer leave. Like others have said, Ilia recognizes that prostatitis may be caused by an infection, or by sore pelvic muscles near the prostate. Tried internal PT once at Ilia's suggestion but found they don't go anywhere near the prostate area where it hurts. Fellow patient indicated he tried internal PT for 3 mos w v limited success and gave it up. I've also tried some of the Wise-Anderson exercises but gave up after a few days.

Sadly, after the Ilia affair, death in the family, work stress, etc. I now experience perineum pain constantly. CBD oil worked great for about 6 mos but no longer takes the edge off of the pain. Experimented occasionally with Ultracet (Tramdol w Tylenol, as they supposedly work better together), but need to try stronger dose of Tramadol soon. I also take loads of Tylenol and Celebrex anti-inflammatory. Need to go off work again until I find a solution.

My condition is particularly nasty because I also have OCD (excessive hand-washing, which after the prostatitis lead to fear of peeing/defecating in one's pants or on nearby furniture, etc. A true nightmare. So I am considering taking CBT counselling for the OCD soon. The OCD and prostatitis feed off of each other no doubt, and I am only able to get by when the pain is under control, lessening my OCD symptoms. Many prostatitis sufferers have another underlying mental health condition that MAY be the reason why their pain doesn't go away long after the infection has supposedly cleared up.

In terms of sex/masturbation, in the beginning you need to take it easy, and eventually build-up to say once every 2-3 days. Abstinence doesn't work in the long-run, cause you likely need to clear out the infected semen/fluid from time-to-time. Recently, I've found sex to be a problem again (no pain during but merely a few hrs after for several days), so not sure what to do about that. Sometimes you can literally clear-it every day, and it helps, but those days seem to be over for me.

I've heard it all when it comes to potential causes:

1) TMS - it's all in your mind, and caused by underlying stress/rage due to unconsious feelings of inferiority, perfectionism, etc. that causes your mind to unconsciously create painful symptoms to distract you from these hurtful feelings - read Dr. Sarno's books [No doubt stress makes this condition much worse, but not sure my unconscious mind is the root cause.]

2) OCD - To reiterate, many CPPS/prostatitis sufferers have associated anxiety disorders (OCD, PTSD, IBS, etc.) that c/b the cause of their prolonged pain, long after the initial injury or infection has healed. [No doubt OCD makes the condition much worse and vice versa, but not sure it is the root cause.]

3) It's a bacterial/viral/fungal infection [No doubt mine all started with a bacterial UTI, and I suspect the ABXs just aren't able to penetrate the bio/germ films and/or get at all of these microgerms. Unclear whether calcification is a mere remnant of such recurring infections or helps to trap/protect this bacteria. The bacteria may in fact be viral or fungal (for which standard ABXs won't kill it). [I still believe this is the most likely answer, and that direct injections (preferably non-anal) are best, but many have mixed results from getting them and unclear whether it's safe. Also very costly and risky. Sure wish they offered this option locally in Toronto.]

4) It's a pelvic floor dysfunction - read Wise-Anderson [Sure your pelvic muscles near the prosate are going to hurt... heck even other nearby muscles hurt because we all tend to unconciously "hold/protect" ourselves down there sometimes, but surely an infected prostate amidst said muscles may be the root cause, not the muscles themselves. To reiterate I tried Standford-Wise inspired exercise for a few days and gave up.]

5) It's an allergic reaction to gluten or something else [seems kinda dubious to me, but some have found success in avoiding wheat, etc. Personally, I have enough trouble avoiding alcohol, spicy food, and caffeine, so I really don't want to avoid wheat otherwise I'll be on a diet of beans and broccoli the rest of my life lol.]

6) It's caused by excessive uric acid [This shows some promise... I have had excessive uric acid causing kidney stones and gout, but was able to control it by limiting salt intake. Nevertheless, uric acid c/b the cause of aggravation to my bladder/prostate, so I'm going to try a uric acid cleansing supplement. Clinical trials of reducing uric acid had mixed results, so I am not optimistic. You'd think that drinking lots of water w/b sufficient to dilute the acidity of one's urine though.]

I too have occasionally researched the internet desperate for a diagnosis and a cure. Is it IC, IBS, prostatitis/CPPS? Yada yada yada. Basically, your prostate hurts and there doesn't seem to be anything we can do to cure it. Be weary about recommendations to take this or that w/o consulting a doc - albeit we're all guilty of doing this - especially when it comes to invasive procedures like injections, irrigation, massage w a sex toy, microwave therapy, or surgery. Ilia tells me that even if you have the damn thing removed w/o complications, this still might not stop the pain. No one in North America performs such risky surgery anyway. One gent had 100% success via surgery with Dr. Konrad in US (but this doc no longer operates likely due to lawsuits).

One myth out there is that eventually the prostate will burn itself out (you will see some reduction in burning), that your immune system will kill the infection, and that eventually w age you will outgrow it. Well 19 years and counting, I'm still waiting for that to happen. Obviously, if we could find some way of stimulating our immune system (largely dictated by gut flora, etc.), we might be able to find a cure. Probiotics are a must when on ABXs but don't think they will do much otherwise.

It sure w/b nice if the medical community would spend the research dollars to at least figure out what causes this damn disease let alone how to cure it. They say 5-10% of the male population suffers from this, or 3 million American men, but that seems grossly exaggerated to me. Obviously the odds of having CPPS/prostatitis and another anxiety disorder is even more remote. I know of only one other case in Toronto of a fellow prostatitis/CPPS sufferer who also has identical OCD fears as mine. Someday, somebody is going to stumble on the cause and a cure; I just hope it's before I turn 90.

ADMIN NOTE: Your first responses went through... but they have to be approved to be seen. It's a pain in the back side, but it keeps the nasty stuff from being posted. You would not believe the amount of porn and spam people attempt to post here. I generally come through every hour or so during the day and evening EST.(New York time) I know you are new - no problem! Thanks for your understanding


Mon Oct 29, 2018 11:59 pm
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Joined: Wed Oct 24, 2018 6:46 pm
Posts: 31
Post Re: 2 years and getting desperate
… Ooops forgot to mention another possible cause of CPPS/prostatitis: autoimmune disorder (your body still thinks you have an infection and the area gets inflamed).

I also tried acupuncture w/o success. It was kinda funny in the beginning... I had needles sticking out of my forehead and nose - only eventually did the practitioner put them near the area that actually hurt lol. Very relaxing but a waste of time.


Last edited by Rocky007 on Tue Oct 30, 2018 1:16 pm, edited 1 time in total.



Tue Oct 30, 2018 12:08 am
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