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 2 years and getting desperate 
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Rocky007,

Thank you for the very informative reply. I can relate to some of things you mention, but not all. My pain never flares up (or down). It's constant and nothing seems to improve or worsen it, whatever that may be. Drinking alcohol, or not, makes no difference, nor does any other food stuff. Every day is the same for me. As I awake I'd say the pain level is at a 2, but as the day goes on it starts to worsen, and by the evening is probably at its worst - to about an 8 or 9, when I can barely sit at all. Then the same routine the next day and so on and so on. Laying down is the best postion for me, then standing and sitting the worst. I can feel exactly where the pain is in my pelvis as it presses down against the left hand perineum, almost againt the bone

I can't relate to stress or OCD as anything to do with my pain. And that's all I have, is pain. I have no urinary type problems and all manual examinations and 2 MRI scans have not found any problem with my prostate gland at all. Sex is a no go for me. I'm just too worried about the pain to enjoy it.

You've seen in my post earlier regarding PN and the Nantes criteria, as my symtoms fit that exactly. Even the pain I feel tracks the route of the pudendal nerve (left hand side only in my case). As I'm in the UK though I have to rely on the NHS. And whilst this is an amazing organisation, it can be frustratingly slow in certain areas. Like pain mamangement where I live. Who knows though maybe this is an infection of some sort (I have had enteroccocus present in my semen 4 times) and it's just a matter of find the right abx. I've tried so many now though, even 3 months on levaquin. The only abx I'd take now would be fosfomycin or moxifloxacin. Only because others on this forum have reported some success with fosfo; and moxi has the best penetration in the prostate from what I've read.

Like you I've tried so many different supplements. All have been a waste of time for me and in hindsight I wished I'd not bothered. But I guess we all cling on to that slight hope that this next thing might work.

I'm having a cystoscopy and massage next week, so I'll see what comes of that. Then hopefully a PN block. Other than that I'm going back on tramadol and I'll ask for a longer course of amitriptyline (longer than a month anyway).

P.S. It confused me too when I first posted here. I thought I hadn't posted until I realised all are vetted beforehand. What an amazing job the admin does here btw. Thank you for that.


Tue Oct 30, 2018 11:06 am
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Update. So I had a Cystoscopy and a prostate massge yesterday under a general anesthetic (first ever one, very weird). Anyway, urethra and bladder are absolutely fine. He tried to get some fluid from my prostate, but couldn't manage it, so took a swab instead for testing. Interesting to see what comes back. As I've had 4 semen samples showing EF, a postive or negative would show something. A postive, then I have a prostate infection. If negative for EF I'll ask for a another semen test. If that the shows EF then it could be somewhere else it's coming from (Seminal vesicles?). Well, that's my plan anyway. Still waiting for a PN block appointment. And I can restart tramadol on Monday at last. This last 4 weeks without it have been unbearable. I'm also speaking to my GP again tomorrow and I'm going to ask for amitriptyline again as I think as I ended the last months course it was helping maybe. I think I need it for longer and higher doseage. I'm off work sick too as I can't drive due to the general.


Thu Nov 08, 2018 8:01 am
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Joined: Wed Oct 24, 2018 6:46 pm
Posts: 31
Post Re: 2 years and getting desperate
Agreed, admin is great.

Cystocopy will rule out serious issues like bladder cancer but won't say much about prostate. I'm currently unable to work as pain is constant now and sitting makes it worse. How are you able to work?


Fri Nov 09, 2018 9:53 pm
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Agree about the cystoscopy. But my Uro wanted to rule it out as a cause, so at least that one can be crossed off.

Work wise is terrible. I can at lease take regular breaks from my desk though, which I do whenever I can. But as things worsen I may be taking more time off. I did take tramadol today after 4 weeks off it. Made a difference immediately, which is a massive relief. I also managed to get amitriptyline again, but at a higher dose, so I'll start that again before bed tonight and hopefully go longer than a month this time.

Something very odd has started to happen though. As I've described previously my pain is all on my left hand side, but as the day wears on I've noticed the pain moving to my right side. At times by the end of the day it's almost totally switched from the left to the right. But this pain (ache and dragging) is more around my right testicle, rather than the perineum/anal/rectal pain on the left. I've no idea how something like that could happen. It's not every day though. Right now (14:30), the pain is purely left hand side, but last night before bed the right was agony. Strange times and I wonder if nerve problems could cause this.


Sat Nov 10, 2018 12:15 pm
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Joined: Sun Jul 15, 2018 2:52 am
Posts: 20
Post Re: 2 years and getting desperate
Lux_d wrote:
Agree about the cystoscopy. But my Uro wanted to rule it out as a cause, so at least that one can be crossed off.

Work wise is terrible. I can at lease take regular breaks from my desk though, which I do whenever I can. But as things worsen I may be taking more time off. I did take tramadol today after 4 weeks off it. Made a difference immediately, which is a massive relief. I also managed to get amitriptyline again, but at a higher dose, so I'll start that again before bed tonight and hopefully go longer than a month this time.

Something very odd has started to happen though. As I've described previously my pain is all on my left hand side, but as the day wears on I've noticed the pain moving to my right side. At times by the end of the day it's almost totally switched from the left to the right. But this pain (ache and dragging) is more around my right testicle, rather than the perineum/anal/rectal pain on the left. I've no idea how something like that could happen. It's not every day though. Right now (14:30), the pain is purely left hand side, but last night before bed the right was agony. Strange times and I wonder if nerve problems could cause this.

Please try Serrapeptase. I have am doing one million spu a day. It is amazing. Google it . Research Serrapeptase.

It will help bio film is the secret of why the infection is impossible to get rid of. Serrapeptase destroys biofilm. Do it. Google it . You need help and this will do some wonderful things.

Colloidal Silver helps also. But Serrapeptase is an amazing enzyme.


Sun Nov 11, 2018 4:27 am
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Gurgi,

I've taken serrapeptase and colloidal silver for 2 months already. I responded to your last post in this thread on the matter. Neither did anything for me. Am I supposed to take it for longer? What strength?

I took these:

"Lindens Serrapeptase 80,000IU Tablets | 90 Pack | High strength and phthalate-free enteric coated tablet to pass through stomach for maximum absorption".

Can you recommend a UK seller as to what I should be using.


Sun Nov 11, 2018 12:46 pm
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Joined: Sun Jul 15, 2018 2:52 am
Posts: 20
Post Re: 2 years and getting desperate
Lux_d wrote:
Gurgi,

I've taken serrapeptase and colloidal silver for 2 months already. I responded to your last post in this thread on the matter. Neither did anything for me. Am I supposed to take it for longer? What strength?

I took these:

"Lindens Serrapeptase 80,000IU Tablets | 90 Pack | High strength and phthalate-free enteric coated tablet to pass through stomach for maximum absorption".

Can you recommend a UK seller as to what I should be using.

Right now I am taking 3-4 120,000 spu three times a day. For about one million spu a day. And about three table spoons of colloidal silver. I am 330 lbs and six foot one inch. But when I went down to two pills of 120,000 spu the pain came back in the testicles and midsection. So I read up more on trying to clear a major infection and the sites I went to said high doses for at least two months. I had only been on a high dose for about two weeks before.

I have been back up to this round of high doses for about three weeks. Perhaps almost a month. The help is dramatic. One other person in England responded to another one of my post yesterday that he finally started taking it and had major improvement. Check my post and you can find your fellow UK mans post.


Mon Nov 12, 2018 5:19 am
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Joined: Tue May 22, 2018 7:06 am
Posts: 12
Location: England
Post Re: 2 years and getting desperate
Lux,

I have sent you a PM


Wed Nov 14, 2018 3:12 pm
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
A small update. 03 Jan I had a Pudendal Nerve block. This seemed a lot more invasive than the Ganglion Impar block I had a few months back. It was done left hand side as that's where the majority of my pain is. When the procedure was taking place I could feel sensations shooting down my nerve in the areas where I feel most pain, but unfortunately since, it has made no difference to the pain. I was holding high hopes for this procedure - ho hum. Other news is that I'm now on month 3 of amitriptyline, up to 40mg a day, soon to be 50mg. I'll keep persevering with amitriptyline as I've read it can a long time to make any difference. Still on a combination of tramadol and ibuprofen throughout the day and have a uro appointment next month. Interesting to see what he says next time as he must be out of ideas now.


Mon Jan 14, 2019 6:40 am
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Joined: Sun Feb 03, 2019 7:10 pm
Posts: 6
Post Re: 2 years and getting desperate
Please read my post on "6-year sufferer".

I have been mostly symptom-free for almost 10 years. Have faith, brothers! You can get rid of this thing!


Mon Feb 04, 2019 8:55 am
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Joined: Sun Mar 03, 2013 8:58 am
Posts: 15
Post Re: 2 years and getting desperate
Hi Lux,

I don't know where you are in the Uk but it really sounds to me like you have a pelvic floor disorder rather than an infection. Get yourself to Edinburgh to see Bill Taylor at Taylor Physio.

He specializes in the pelvic floor. You will need internal massage and trigger point release. Also check the muscle tightness in your stomach(abs) Glutes etc. All these can pull on pelvic floor. You have to learn how to do reverse kegels and Relax, Relax Relax those muscles. If you are in the South then phone and speak to Bill and he will put you in touch with someone down there to do the same. I hope it works for you. It certainly helped me. Life has been much easier for me with a flare up a couple of times a year. (Usually after overdoing something in the pelvic region.) Be Well...


Tue Feb 05, 2019 4:03 pm
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Joined: Mon Jan 29, 2018 6:42 am
Posts: 42
Post Re: 2 years and getting desperate
Steve wrote:
Hi Lux,

I don't know where you are in the Uk but it really sounds to me like you have a pelvic floor disorder rather than an infection. Get yourself to Edinburgh to see Bill Taylor at Taylor Physio.

He specializes in the pelvic floor. You will need internal massage and trigger point release. Also check the muscle tightness in your stomach(abs) Glutes etc. All these can pull on pelvic floor. You have to learn how to do reverse kegels and Relax, Relax Relax those muscles. If you are in the South then phone and speak to Bill and he will put you in touch with someone down there to do the same. I hope it works for you. It certainly helped me. Life has been much easier for me with a flare up a couple of times a year. (Usually after overdoing something in the pelvic region.) Be Well...


Steve,

Thanks for the post. I live in the NW of England. I saw my Uro earlier this week and he has effectively washed his hands of me now, saying there is nothing more he can do (which wasn't much tbh). He is writing to my GP for a referral to a specialist pelvic PT. So I'll see what comes of that, but thanks for the information I'll keep it mind if I don't get anywhere more local. Saw my GP as well yesterday and I've upped the Amitriptyline to 60mg a day, and can go to 100mg if need be. Still on the Tramadaol as it's the only thing I've ever taken that helps at all. Uro refused point blank to prescribe Fosfomycin - I'm tempted to buy it myself online if I had a reliable source.


Thu Feb 07, 2019 10:53 am
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Joined: Sun Feb 03, 2019 7:10 pm
Posts: 6
Post Re: 2 years and getting desperate
It sounds like you are going through alot. I had symptoms for nearly 2 years and I did everything that was non-invasive, hypnosis, drugs, diet adjustment...

I read the book, "Headache of the Pelvis" and with a PT releasing trigger points in the rectum and perineum, stretching and attending a seminar with fellow sufferers in NYC (Useful but not necessary) I was able to escape the nightmare mostly within 4 months and completely within 7-8. I would be curious to know if people followed the Wise protocol and succeed or failed. For me and two others that I gave the book to, it was a strategy that worked.

Also, the Physical Therapist I found was amazing, pushing on the trigger point in the anus until it released If you have ever had this done in your neck or back, it's VERY painful until it releases, you need someone who knows how to do this. My PT read the book and applied the technique. As a side note, she specialized in 'female" issues but understood the pelvic floor.

The book is not expensive and I hope that helps! Hang in there and let me know what you think!!

Look for it on Amazon.


Thu Feb 07, 2019 12:08 pm
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Joined: Sun Feb 03, 2019 7:10 pm
Posts: 6
Post Re: 2 years and getting desperate
I had symptoms for nearly 2 years (Pain in the penis, anus, perineum, frequent urination, general disaster, life-impacting) and I did everything that was non-invasive, hypnosis, many pain drugs and antibiotics diet adjustment... Worse in times of stress, too much caffeine or ejaculations. Cut that out with some minimal relief.

I read the book, "Headache of the Pelvis" and with a PT releasing trigger points in the rectum and perineum, stretching and attending a seminar with fellow sufferers in NYC (Useful but not necessary) I was able to escape the nightmare mostly within 4 months and completely within 7-8. I would be curious to know if people followed the Wise protocol and succeed or failed. For me and two others that I gave the book to, it was a strategy that worked. I am convinced in my case it was muscular/nerve related, not bacterial.

Also, the Physical Therapist I found was amazing, pushing on the trigger point in the anus until it released If you have ever had this done in your neck or back, it's VERY painful until it releases, you need someone who knows how to do this. My PT read the book and applied the technique. As a side note, she specialized in 'female" issues but understood the pelvic floor.

The book is not expensive and I hope that helps! Hang in there and let me know what you think!!

Look for it on Amazon.

Good Luck!


Thu Feb 07, 2019 5:34 pm
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Joined: Sun Jul 15, 2018 2:52 am
Posts: 20
Post Re: 2 years and getting desperate
Take a table spoon of Colloidal Gold a day. Take a table spoon of Colloidal Silver a day. Take three 120,000 SPU doses of Serrapeptase a day. Never take Ibuprofen ever again, it really fucks with your prostate.

Do this for three months and tell me if your Chronic Prostatitis does not get dramatically better. You can do your own research on why all three things can really help.

I am dramatically better.

I got Chronic Prostatitis in 1994. Suffered the whole time. Took Cipro and Penisilian multiple times over the decades. No long lasting help.

Not kidding. Do it. What do you have to lose?


Thu Feb 07, 2019 6:51 pm
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