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 I really am suffering......please help if you can. 
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I really am suffering......please help if you can.
Guys,

Well it's only been a few days, symptoms returned already, getting me down this. Thought I'd have been used to this, but this time it's back with anger. Damn weakness is my problem, inner leg pains and damn stabbing sharp pains near your rectum. :(

Praying something comes of the latest culture and microbiology. I mean who prays for something to be wrong with them in this day and age! But sadly I am so I can at least do something about it..........


Mon Mar 18, 2013 3:14 pm
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Joined: Sat Dec 08, 2012 4:30 am
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Post Re: I really am suffering......please help if you can.
england wrote:
Guys,

Well it's only been a few days, symptoms returned already, getting me down this. Thought I'd have been used to this, but this time it's back with anger. Damn weakness is my problem, inner leg pains and damn stabbing sharp pains near your rectum. :(

Praying something comes of the latest culture and microbiology. I mean who prays for something to be wrong with them in this day and age! But sadly I am so I can at least do something about it..........


England, I remember the first time I went through test after test I was just like you. I prayed someone would tell me they found something, anything, but not another negative test result. Not many people understand how frustrating and depressing it is to keep hearing the same thing over and over. We just want someone to find something we can fight.

So when I say I hope they find something, you know what I mean. It's impossible to fight shadows, but that's what many of us are faced with day after day.


Mon Mar 18, 2013 3:55 pm
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Joined: Thu Nov 29, 2012 1:46 pm
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Post Re: I really am suffering......please help if you can.
There Dr. Kongrad in Miami that remove prostate for prostatit!!! Why dont you try injection in California... 1400 for 3 injection you could see if it works for u?


Mon Mar 18, 2013 5:44 pm
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Joined: Thu Dec 06, 2012 8:17 pm
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Post Re: I really am suffering......please help if you can.
This probably won't put anyone at ease but I spoke to two of the top private GUM doctors in the UK, they both told me similar stories.
I got my issues through oral sex as well , there's all sorts of bacteria in the mouth which can cause problems.

Mine was uti - then prostatitis with testicle pain, still having mild issues now 8 months down the line. Sometimes your body will eventually kill the infection but the inflammation and pain will persist, as your immune system will continue with its response, no one knows why.
One urologist did 35 prostate cultures then tested the culture in the lab, I think 99% of them were free from any bacteria. However these men all had an enlarged prostate , even young men who got the infection through sex or what ever.

His point was the prostate is a funny thing and anything can set it off.

Don't give in , treat the symptoms but you may have to accept that no infection is present.


Mon Mar 18, 2013 7:55 pm
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Joined: Sat Dec 08, 2012 4:30 am
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Post Re: I really am suffering......please help if you can.
cosworth60 wrote:
One urologist did 35 prostate cultures then tested the culture in the lab, I think 99% of them were free from any bacteria. However these men all had an enlarged prostate , even young men who got the infection through sex or what ever.

His point was the prostate is a funny thing and anything can set it off.

Don't give in , treat the symptoms but you may have to accept that no infection is present.


Dr Polacheck has a thread here where he tested 600 men and 99 percent had bacteria or bacteria like organisms in their cultures. This is what makes it so difficult on patients. No one can agree on anything when it comes to prostatitis cause or treatment.


Last edited by Madcap on Mon Mar 18, 2013 10:32 pm, edited 1 time in total.



Mon Mar 18, 2013 9:09 pm
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Joined: Thu Nov 29, 2012 1:46 pm
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Post Re: I really am suffering......please help if you can.
Madcap I so agree with you!!! What is difficult for sufferers is not to know what wrong!!! The only dr who have help people are dr who deal with it like infection!!!

Im only 30 and i dont want my prostate no more!!!

why would are prostate be boggy enlarge full of calcification if there no infection?

If women would have a prostate we would have a cure by now...


Mon Mar 18, 2013 10:10 pm
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Joined: Thu Oct 11, 2012 5:35 am
Posts: 21
Post Re: I really am suffering......please help if you can.
It can come back after massage, but regular massage can help.

Its all so frustrating I agree as so little is known and so little can be done. I don't have a boggy prostate but have symptoms and some BPH type problems. I am having a TURP this week. I hope it improves things some men have reported improvements and even a cure from this op.

I think the Konrad clinic solution deserves wider support and research if the claims are correct then the radical removal might be the gold star treatment for the future. Taking all of us out of this for good.

Jack


Tue Mar 19, 2013 8:02 am
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Joined: Tue Feb 05, 2013 7:57 pm
Posts: 225
Post Re: I really am suffering......please help if you can.
cosworth60 wrote:
This probably won't put anyone at ease but I spoke to two of the top private GUM doctors in the UK, they both told me similar stories.
I got my issues through oral sex as well , there's all sorts of bacteria in the mouth which can cause problems.

Mine was uti - then prostatitis with testicle pain, still having mild issues now 8 months down the line. Sometimes your body will eventually kill the infection but the inflammation and pain will persist, as your immune system will continue with its response, no one knows why.
One urologist did 35 prostate cultures then tested the culture in the lab, I think 99% of them were free from any bacteria. However these men all had an enlarged prostate , even young men who got the infection through sex or what ever.

His point was the prostate is a funny thing and anything can set it off.

Don't give in , treat the symptoms but you may have to accept that no infection is present.



Which urologist did 35 prostate cultures and tested in the lab? I'd need to see him :S


Tue Mar 19, 2013 10:21 am
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Joined: Sat Jun 09, 2012 2:06 pm
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Location: England
Post Re: I really am suffering......please help if you can.
Guys,

Inner thigh leg pains / weakness. A common symptom ?..... My legs inner thighs/testicle ache is my worst syptom.


Tue Mar 19, 2013 2:16 pm
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Joined: Tue Feb 05, 2013 7:57 pm
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Post Re: I really am suffering......please help if you can.
england wrote:
Guys,

Inner thigh leg pains / weakness. A common symptom ?..... My legs inner thighs/testicle ache is my worst syptom.


Oi, england. I sorta know what you're talking about.

I dont know your full story, so I'll give you mine. I've had issues before, but in short I had a gastrointestinal infection, and my colon and pelvic muscles went into a spasm from all the trauma. From what I'm told, it lasts a long time. I'm going to physiotherapy. The goal is to relax the pelvic muscles, as the tension in all the supporting muscles (which "hold everything in place") can refer pain to just about everywhere, including the upper legs AND the testicles.)

I was convinced at one point that the testicular pain I was feeling was some type of severe infection. But my physiotherapist assured me that men can feel testicular pain from pelvic floor tension.

Treatment is usually relating to...warm baths..(to relax the muscles).

As far as my physiotherapist goes, she gave me a ton of exersizes (stretching) you can do multiple times a day to reduce pain.. .. IDEALLY you could get a prescription for Xanax or Diazepram, but of course you run the risk of experiencing major fatigue or other symptoms. Yoga is ideal but its something I haven't had the time to get to yet. I'm still in my early stages of dealing with this overall.

I've been told rectal suppositories help. I haven't tried these very much although I did get a prescription from my urologist for Diastat which is Diazepram in a gel. You inject a syringe (NOT a needle...that would hurt) of 1-2mg and it relaxes thearea. I dont like to use this very much for various reasons. The addiction level can still be the same as taken orally and you still can feel SOME side effects as far as sluggishness and wahtnot goes, but less extent probably.


Tue Mar 19, 2013 3:45 pm
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Joined: Thu Nov 29, 2012 1:46 pm
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Post Re: I really am suffering......please help if you can.
Guys i think its really complicated thing but why would England have muscle spasm problem when he had relieaf from antibio at the beginning again im no dr but i think we put are head in the sand when we try to find other thing then infection... I think there is for sure some muscle spasm issue for certain people,,,

England stated that is prostate was enlarge,,, that no muscle problem issue

Lets be honest when the last time that a guy stated on the post he was cure?

If it would be a muscle problem we could fix it

I hope your right with the muscle issue but why is my sperm level count low and i have pus cell in prostate liquid and the doc stated prostate boggy

Afterward is diagnostic was Nonbacterial prostatit

I wish i had answer but when you pee and it burn and you have a tooth ache in your ball that no muscle spasm!!!


Tue Mar 19, 2013 6:32 pm
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Joined: Sun Mar 17, 2013 6:53 pm
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Post Re: I really am suffering......please help if you can.
England,

You asked if people could post their other symptoms: well mine are so many hard to list them all but here goes:

prostate tenderness, hard to sit at times, bladder pain/inflammation, IBS, gastro issues, allergies, probable intollerences, aching joints, tiredness (not quite chronic fatigue but getting there), muscle aches, neck aches. Just a whole host things really and when in flare everything comes up at once.
I get a tenderness, ache, bruised feeling in the perineum on my left hand side. Pretty sure I am sensitive to yeasts and candida too.


Tue Mar 19, 2013 8:50 pm
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Joined: Thu Oct 11, 2012 5:35 am
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Post Re: I really am suffering......please help if you can.
I sought of agree with Shaey. On the British site we go on about this and that causing it without any data to support much of it.

What puzzles me a bit on the USA site is the evidence of the Kongrad Clinic. There has been speculation here in the UK about this as to whether his claims are genuine but a surgeon here has tried laparascopic removal and claims that it works in most cases. Does this work as well as he says. I have friend who is desparate here and is considering a radical is it worth his while going there?

Any comments welcome on that one.

Problem is that people who improve or get over this - yes men do - rarely post up the positive results, they just get on with their lives again.

I see the injections and the Kongrad solutions mentioned but rarely do we here from those who are helped.

I will post up my improvements I have had a hell of time with this recently but with massage my pain has reduced loads. Yep I have real problems and I am having a TURP tomorrow in the hope that some of this can be reduced as a few good guys have posted here in the past.

Jack


Wed Mar 20, 2013 6:43 am
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Joined: Sat Jun 09, 2012 2:06 pm
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Location: England
Post Re: I really am suffering......please help if you can.
Thanks Lakes.

Your symptoms are quite broad. Where mine are quite limited to perineal pain/inner thigh & testicle ache. Some arm leg weakness.

I wonder if prostatitis derived from gastro illnesses differs somewhat to probable " infectious sexual" prostatitis. I say probable.....just curious. Thanks for posting your symptoms mate.

Shaky,

Only people I have heard from who have been cured are those who choose injections or direct removal.
But it would depend in the definitions of each poster, some may say regular massages/ baths/ antibiotics eased symptoms enough to lead a near normal life, others have found different routes to cope. Seems your pretty adimant on it being a "infection". I can't disagree, but what I can say, is that if the injection works for you mate, it's just got to be a clear indication of either 1. Relaxing the prostate muscles 2.killing the infectious agent. But why can't any infection be found on testing prior to injection?

Truly funding and research need to be pumped into this terrible affliction, it's all a bit of a guessing game for us right now. But we can all help by posting what we know helps relieve symptoms and what doesn't.

All I know is before I go to sleep and when I wake up.......it's still there.


Wed Mar 20, 2013 6:50 am
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Joined: Thu Dec 06, 2012 8:17 pm
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Post Re: I really am suffering......please help if you can.
LAkes - did you take a large course of cipro , or similar flox drug ?


Wed Mar 20, 2013 7:01 am
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Joined: Sat Jun 09, 2012 2:06 pm
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Location: England
Post Re: I really am suffering......please help if you can.
Jack,

Best of luck with the procedure tommorow mate. Sadly my previous post missed your reply, or I would have touched on that futher.

Take it easy mate


Wed Mar 20, 2013 9:36 am
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Joined: Thu Oct 11, 2012 5:35 am
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Post Re: I really am suffering......please help if you can.
The truth for me about posting up was that mine died down to such an extent in the late 1990's that I hardly knew I had it.

I didn't post that up and just got on with my life as normal.

I wonder how many there are out there like that.

As I said before I will post if my operation gives me some long term benefit. We need all the encouragement we can get.

Jack


Wed Mar 20, 2013 9:37 am
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Joined: Sun Mar 17, 2013 6:53 pm
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Post Re: I really am suffering......please help if you can.
Yes, like most I was given a 6 week course of Ciprofloxacin. I wish I had only taken one of them - because I did not get side effects until well on in the course. Whole body rash and blow up on the last week of the course and left with peripheral neuropathy, tendon problems, twitching. Some people have tendon rupture a day after taking it. Cipro is an appalling drug and should be banned. It never does anything to help prostatitis yet urologists and doctors continue to give it out here in UK (don't know about elsewhere). They immediately reach for the Cipro without any regard as to what it is actually going to do to your DNA.

I would urge everyone to think very hard about taking any fluroquinolones. Google the cipro wall of pain/fluroquinolone walls of pain and research about toxicity of fluroquinolones. As well as all the other CNS and tendon rupture they cause, they completely mess up your gut and destroy oxilobacter formigenes - these are the bacteria that break down oxalates. Fluroquinolones are some of the most appalling drugs around.


Wed Mar 20, 2013 10:03 am
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Joined: Thu Nov 29, 2012 1:46 pm
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Post Re: I really am suffering......please help if you can.
England they are ways of finding infection Polacheck, Toth almost always find bacteria... If you read the story of Goran he explain it very well... If doc would do the testing like Polachec and use direct injection to kill it maybe we would gave a chance!!!

Toth explain in is book that the wbc count is low because prostate get use to infection...

The only thing i know i dont know one Uro using antibio and fomax who cure no one!!!

England we were perfectly healthy before this


Wed Mar 20, 2013 10:07 am
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Joined: Tue Feb 05, 2013 7:57 pm
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Post Re: I really am suffering......please help if you can.
England was that your first time getting a prostate massage? Hopefully you will get results sooner than later, but in the mean time, just hang on and try to be positive about all this. If you experienced relief for any length of time after a prostate massage, that is a very good sign. It means your lessning the tension allaround the prostate as well as draining whatever fluid and potential infectious agent there couldbe in there.

IT will take time . keep us all posted.


Wed Mar 20, 2013 10:09 am
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Post Re: I really am suffering......please help if you can.
GC Jack wrote:
I sought of agree with Shaey. On the British site we go on about this and that causing it without any data to support much of it.

What puzzles me a bit on the USA site is the evidence of the Kongrad Clinic. There has been speculation here in the UK about this as to whether his claims are genuine but a surgeon here has tried laparascopic removal and claims that it works in most cases. Does this work as well as he says. I have friend who is desparate here and is considering a radical is it worth his while going there?
Jack


You would be hard pressed to find a Dr in the States willing to remove a non cancerous prostate. The risks alone, sexual dysfunction, incontinence, make it a less than appealing alternative. If you did find a Dr who would do it you would then have to either pay out of pocket, and considering the cost most people would be unable or unwilling to pay it, or try to convince your medical insurance company to cover it. That would be just as difficult because insurance companies are not likely going to do it when there is little if any evidence to support it.

Here in the States, even TURP is not recommended by a majority of urologists as a successful way to treat prostatitis. It's a successful method to improve urinary flow if that is your basic problem, but if you have many symptoms like a lot of people here, my urologist said it can make those symptoms worse, not better.

The general feeling in this country is the less you disturb a inflamed or painful prostate, the better. My Dr will not even do a DRE when I'm having symptoms, and I can honestly say that when I made the mistake of having one from another Dr during my first bout with this disease, it caused my symptoms to spike overnight and sent me into 6 more months of hell. So injections and massage are not going to be recommended by very many Drs, because again its invasive therapy and not considered a beneficial. I know it has worked for some people here, but as everyone knows its only offered by a handful of Uros.

Urologists are at the bottom of the ladder when it comes to funding research. This is why we have no cause, or standard cure for prostatitis.


Wed Mar 20, 2013 11:19 am
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Post Re: I really am suffering......please help if you can.
Lakes wrote:
Yes, like most I was given a 6 week course of Ciprofloxacin. I wish I had only taken one of them - because I did not get side effects until well on in the course. Whole body rash and blow up on the last week of the course and left with peripheral neuropathy, tendon problems, twitching. Some people have tendon rupture a day after taking it. Cipro is an appalling drug and should be banned. It never does anything to help prostatitis yet urologists and doctors continue to give it out here in UK (don't know about elsewhere). They immediately reach for the Cipro without any regard as to what it is actually going to do to your DNA.

I would urge everyone to think very hard about taking any fluroquinolones. Google the cipro wall of pain/fluroquinolone walls of pain and research about toxicity of fluroquinolones. As well as all the other CNS and tendon rupture they cause, they completely mess up your gut and destroy oxilobacter formigenes - these are the bacteria that break down oxalates. Fluroquinolones are some of the most appalling drugs around.


Cipro is the first antibiotic prescribed in the States as well. If not Cipro, Levaquin, and then Bactrim. You are correct, it is a terrible drug and should be banned, or at the very least Drs and pharmacists should be forced into disclosing how dangerous it can be. Yes it has a black box warning, but many people just swallow anything their Dr hands them.

The fact that the problems can start 6 months after you finish a dose makes it more of a concern. I noticed this week my Achilles' tendon is bothering me, so now I have to be concerned it could snap just walking up and down stairs.

Anyone offered it should refuse. Ask for Bactrim. If you have to take something, Bactrim is a safer alternative for short term use.


Wed Mar 20, 2013 12:22 pm
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Post Re: I really am suffering......please help if you can.
In reply to Madcap why is my URO recomending it?

Are you saying the Kongrad clinic is wrong then?

I never suffer after a DRE or massage and in fact benefit from a massage. If you search TURP in this site you will find that some benefit from the procedure in fact there are some on the British site that have.

The sad truth is that so little is known and few URO's have little interest in it so fail to consider possibilities.

For some incontinence and other problems would be preferable to living with the pain levels they have to endure

Jack


Wed Mar 20, 2013 12:24 pm
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Post Re: I really am suffering......please help if you can.
GC Jack wrote:
I will post up my improvements I have had a hell of time with this recently but with massage my pain has reduced loads. Yep I have real problems and I am having a TURP tomorrow in the hope that some of this can be reduced as a few good guys have posted here in the past.

Jack



Jack, just wanted to wish you the best tomorrow. It sounds like your biggest problem is urinary flow, and TURP should make a major difference for you. When you feel up to it give us an update.


Wed Mar 20, 2013 12:28 pm
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Post Re: I really am suffering......please help if you can.
GC Jack wrote:
In reply to Madcap why is my URO recomending it?

Are you saying the Kongrad clinic is wrong then?

Jack


This is what I'm saying. In the USA, its all about money. So if something works for a vast majority of people, its going to be offered by a majority of Drs. Just think about it. If a Dr can make money from a procedure, there is no reason not to offer it if it works. They are only concerned about 2 things, the first is does it work, the second is the patient or insurance company going to pay me for doing it.

In the USA everything follows the money. I'm not saying anyone or anything is right or wrong, I'm saying its about getting paid. If you offer a service or treatment not generally offered, people will have to go to you to receive it. Now if this same service or treatment was universally recognized to work, and you know you are getting paid for it, there is no reason not to do it.

The fact is no one knows what does or doesn't work, and everyone has to roll the dice and hope they make the right choice. We are all in the same boat with this problem. There is no right or wrong treatment, only what works for the individual.


Wed Mar 20, 2013 1:26 pm
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