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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.
Hey everyone,

Thought I would update.

Just back from the doctors - what a waste of time that was. Told them that syptoms are no better, had a very bad few days last week after I had a few beers. Been alwful ever since, damn testicle ache / abdomen pains/ bad inner thigh pains and constant urethral discharge on bowel movements accompanied by the obvious frequent urination and weakness. Realy at a point now of almost giving up, waiting for this appointment to see the new urologist and just praying he/ she can help or at least agree with my syptoms. The doctors keep looking at me and saying they have no clue! Seriously seriously making me feel worse today. So far I've lost my family house and almost my job. Now I'm in a one bed flat and just living on pain relief and baths. Socially isolated myself due to being utterly depressed and alone. Bad times, stress no doubt playing a part as well as some anxiety thrown in for good measure.

Meds : 60mg Amitriptyline per day
: 2 x 400mg ibuprofen per day

I've given up on the tamsulin it's useless and doing nothing other than shooting my junk into my bladder.

Having severe problems with post ejaculation. Pain/weakness and testicle pain. :(

All the best everyone


Tue Dec 11, 2012 1:07 pm
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Joined: Fri Mar 23, 2012 5:18 pm
Posts: 73
Post Re: I really am suffering......please help if you can.
Damn England,
Sound's pretty messed up.
Yeah, stress is a big part of the problem and your story ain't helping that brother.
I just read on here about doing enema's. I may just go and buy one.
They say it helps a lot.
Flomax sux's
It made me worse as you said, the junk in the bladder.
IB's have helped but whats next from that's / Ulcers ?
They say booze inflames us but it sure makes me feel better for awhile.
Hang in there......


Tue Dec 18, 2012 6:38 pm
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Joined: Thu Dec 06, 2012 8:17 pm
Posts: 10
Post Re: I really am suffering......please help if you can.
England , sorry to here what you're going through..
I had something similar , only my symptoms seem to be improving.
I have some research on bacteria etc I could send you which you might find useful .
Also a tonne of links to other similar cases. I'm also based in the UK - LND.
What's your email address ?


Tue Dec 18, 2012 6:43 pm
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Joined: Sat Dec 08, 2012 4:30 am
Posts: 817
Post Re: I really am suffering......please help if you can.
Sorry England, wish you were feeling better. You're right about going to the Dr. My wife always says to go when it gets bad, but as I always tell her the only thing that will be different when I leave his office is I will have less money in my pocket and the same problem.
If your stomach can take it you might try alternating between ibuprofen, naproxen and aspirin. Also Ativan seems to help.
I also quit flomax a couple of days ago. It makes me feel like I have the flu sometimes, light headed and dizzy. Not worth it.
I'm going in for a physical tomorrow, if I have any news that might help I'll post it.
Hope you feel better soon....


Tue Dec 18, 2012 9:59 pm
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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.
Hey everyone,

Realy appreciate the support, I can understand what you guys are/ or have been going through. It's been a testing time for me this last few months. But I've had some real bad "flare" ups that realy do knock it out of you.....

I'm still awaiting the referral to the new Urologist, I'm trying to arm myself with as much information as possible, as I know the time you have to sit/explain and go through symptoms etc with them is very limited. My last urologist took 30secs to dignose and prescribe yet more Cipro :(

On a plus note, I've decided to get back training and hit the gym and walking far more. Eating realy healthy and it seems to help slightly. But then I go for a bowel movement and all hell breaks loose. This damn urethral sticky clear discharge after going to the toilet, pours out my urethra and makes me feel like going to the toilet every five minutes after. Inner thigh pain and testicle ache..... Worst.

At night I'm taking Amytrip to dull the thigh ache / perineal pain and testical ache.

So it all hinges on this next Urological visit for me, it's priority that it goes well and I can explain my syptoms well enough for him/her to investigate. Any help on things to say or ask for would be awesome....

Hope all you dudes are well,
Many thanks


Wed Dec 19, 2012 5:13 am
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Joined: Wed Dec 19, 2012 8:32 pm
Posts: 1
Post Re: I really am suffering......please help if you can.
i'm interested in the neurological report. e. Be it a neurological network that has formed to compute the regularity of the need for white blood cell release and reporting to the brain the symptoms, depression won't help as your immune system will weaken despite its extensive production of your white blood cell count. recipe for exhaustion. I wonder if fasting, eating 5 times a week in small child size portions and low intake of all fruit on 2 days, only the peels, apple, pear, potato or if no peels the juice and matter. (if your brave) wonder if it would help. It would certainly drop your ign-5 levels, cholesterol levels and engage your body into "cellular repair" mode. (starving yourself for 4 days can also do the same buts it extreme and not recommended) Rather than the normal "go go go" mode. As you also lower your food intake you're brain will "boost its cognitive functionality" as you. Maybe a system reboot will help. If you've had flu symptoms load yourself up with vit C. you go fairly heavy on it too. it boosts white cell ability reasonably. and go on holiday, away from where you are, away from life, easier said than done. but worth it. go see the sun from a different view from the world.


Wed Dec 19, 2012 8:49 pm
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Joined: Thu Sep 13, 2012 7:08 pm
Posts: 23
Post Re: I really am suffering......please help if you can.
Have you read the cures at bbbb/forum ??

I have been following a form of the Wise Andersen protocal, and it has made me about 75% better. Not 100%, but I feel I am moving in the right direction at last !!


Fri Dec 21, 2012 10:03 pm
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Joined: Sat Dec 22, 2012 12:57 am
Posts: 1
Post Re: I really am suffering......please help if you can.
England,

Very sorry you are in so much pain. I'm not in such a bad condition as you are but I've been suffering from Prostatitis for several years.
I've done several treatments with antibiotics and it seems to help but only for a while. However, I believe I've developed some side effectsI like a disease called Pheripheral Neurology. I cannot lay on the right side because my pelvis hurt a lot. I also have pain in my inner right thigh. Additionally, I have problems with my ankle, loss of feeling in my feet, pain in my feet and sometimes with legs. I had scheduled an appointment with a neurologist but I cancelled because I think I'm getting better. I'm just getting started on another round of antibiotics. One thing i have always been concerned about is that I do get oral sex from my wife. This does not seem to help. However, I dont know if this is a problem or not but we all know the mouth is loaded with germs. I also went about 10 days with minimum sex and my symptoms seemed to get better. I have recently gotten over another problem which was bad acid reflux. It took several years to get better but I did. I also think you will get better. The body is looking for ways to heal itself all the time sometimes it takes time. If I were you I would probably see a neurologist as it appears you have some kind of nerve damage from medication. I would also focus on relief for now rather than root cause for a while. I would try, exercise, very healthy diet, vitamins and the messages they seem to recomend here. At one point last year I just started stretching every morning and that seemed to help.
Good luck partner and keep us informed of your progress. I'm sure soon we will hear good news.


Sat Dec 22, 2012 1:19 am
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Joined: Wed Jun 08, 2011 11:45 pm
Posts: 122
Post Re: I really am suffering......please help if you can.
I do not think our problems are neurological .. I have had the leg pains , back pains , feet pains.. Butt pains etc. etc. also sweaty foot .. All of these have went away after injections. I went to a neurologist when i first got this. He did nerve blocks and all sorts of things that did not work.


Sat Dec 22, 2012 12:47 pm
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Joined: Thu Dec 06, 2012 8:17 pm
Posts: 10
Post Re: I really am suffering......please help if you can.
England , where in the UK are you ?

I see you're not having much luck with Urologists. Try a good a GUM specialist , private if you can , not cheap at £220 for initial visit but they know a lot more than the uro's on bacteria . ( I know two in London if you want contacts )

Did you pay for the expensive PCR DNA tests for bacteria? The wet mount and culture one's are useless. Also did you test the discharge + seaman + urine ?

For the prostate issues , try the broccoli protocol just google it , I think it really helped me along with some anti's , it works by raising the immune system.
For your join issues etc the cipro will just make them worse, its VERY nasty stuff , and i refuse to take and floxiquinilie now after doing some research on it .
Its best to get that sh-t out of your system , cipro bonds with magnesium , this one is good : http://prostatitis.org/redirect.php?lin ... 6bbd739d0a
Also check out http://www.thefinchleyclinic.com/shop/a ... 6bbd739d0a - this will boost your immune system, as well as get rid of any toxins in your system. I take both of these, just dont take them when you want the anti to work ! i.e. if you go on doxy , metronidazole etc etc.

If you prostate has calcification pockets you could benefit from prostate massage , its controversial. Not all uro's will do it , this guy will : http://prostatitis.org/redirect.php?lin ... hah.co.uk/ again private and not cheap. Think his initial consult is £325 then £200 .

Don't give up hope , you might have to treat yourself but you will get better.

I have a list of NSU , NGU bacteria and drugs if you need it ... all the best .


Sat Dec 22, 2012 5:53 pm
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Joined: Thu Sep 13, 2012 7:08 pm
Posts: 23
Post Re: I really am suffering......please help if you can.
My post was edited to remove the link to another forum.

why ??

i thought we are supposed to be helping each other here ??

:roll:


Sun Dec 23, 2012 8:05 am
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Joined: Mon Dec 17, 2012 5:56 am
Posts: 6
Post Re: I really am suffering......please help if you can.
I taught myself how to do prostate massage on my own.

Its not pretty, the pain spikes doing it but the relief later on is substantial. After doing it a few times, it becomes no big deal.

Good luck, i feel your pain. i was verging on suicidal for a while when the doctors just weren't helping and the pain drove me crazy. Try meditation - I meditate every day now, it helps a lot. One or two meditation classes will teach you a lot of skills to calm yourself, your mind, your body. you can learn to detach from it more than you realize.

Hope that helps, it was my turning point.


Sun Dec 23, 2012 8:55 am
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Joined: Thu Nov 29, 2012 1:46 pm
Posts: 345
Post Re: I really am suffering......please help if you can.
So Englend what happening with you?


Sun Dec 23, 2012 11:39 am
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Joined: Tue Jan 01, 2013 8:27 pm
Posts: 1
Post Re: I really am suffering......please help if you can.
Hi there everyone! I HAD the same problems for 8 months. I've seen atleast 15 doctors in 3 countries then I finally went to a private clinic in my home town. They sent me to a spine clinic. The doc said my scoliosis causes the pain in my testicle(s) n all around that area. The muscle which moves my hip got shortened on the right side and couse of that a muscle in my right thigh was tighten constantly. That coused inflamation in my testicles which spreaded to my testicle cord, epididymis tummy and to my leg. Im doing fisiotherapy and I get trigerpoint massage too. Now I'M HEALTHY AGAIN! Please share this message to everyone who has similar problems. It was very scary that time I had to quit my jobs I thought I wont be able to work again. I'm sure not everybody has the same spine problem but maybe you do. It's important to check it out! Go to a spinde MRI then u'll see. Sorry for the typing I'm not an english speaker. Hope everyone gets better soon.


Tue Jan 01, 2013 8:40 pm
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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.
Hey everyone ,

Hope your all doing ok. Thanks so much for getting on here and posting.

Urology appointment has arrived now and is going to be on the 11th of this month. Strangely the appointment is at my doctors? And I've been told I will be undergoing a series of tests lasting approx 4hrs untill midday. I am waiting for the information to arrive via the post as to what this consists of? Il update when the letter hits my mailbox.

Still getting moderate/ severe penile discharge during bowel movements, resulting in urinating a lot. Do you guys experience the same? As well as deep inner thigh burning and aching?

Any thoughts views on this would be great.

I've been trying desperately to get back into shape, walking and hiking, been limited by the testicle aches and just utter leg weakness but I've persisted. It's helped me mentally as at times I've realy struggled with that drive to carry on, but I'm just not ready to give up yet no chance, I'm not gona let this beat me and all I want is to get well. Some days its worse than others - stress and anxiety make it so much worse I've discovered that.

Im hinging everything at the moment on this urology visit, hoping he / she can find relief for me.

Stay well mates hope your all doing ok, apologies for my lack of postings its been a sad christmas and new year haven't been the most talkative I know il get updating this tread more now.

All the best


Thu Jan 03, 2013 8:21 pm
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Joined: Sat Dec 08, 2012 4:30 am
Posts: 817
Post Re: I really am suffering......please help if you can.
England, glad your appt with Urologist is soon. Maybe now you can get some answers to help you through this.
I have experienced the aching in thighs in the past, but never any discharge. As for the exercise my urologist is always telling me to get as much as possible but in my case it only makes my symptoms worse, but if its working for you that's a plus. Not being able to exercise is what I miss most.
Best of luck with your appt and keep us updated.


Fri Jan 04, 2013 6:40 pm
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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.
Thanks Madcap mate,

Yup that damn inner thigh burn/ache is realy bothersome, that with the testicle ache is realy getting me down.

As regards to the urethral discharge during bowel movements - does anyone experience this frequently?

Cheers guys


Fri Jan 04, 2013 8:07 pm
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Joined: Thu Nov 29, 2012 1:46 pm
Posts: 345
Post Re: I really am suffering......please help if you can.
You really should do a Dna test to check for mycoplasma... Those little bug are really hard to culture!!!


Fri Jan 04, 2013 8:54 pm
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Joined: Mon Oct 08, 2012 2:16 am
Posts: 3
Post Re: I really am suffering......please help if you can.
England,
I have mention to you before that I had discharge with almost every bowel movement. It was after I would strain. It was always clear and very sticky. Since taking a months worth of cipro I have had the discharge only three times. The constant burning thighs are very annoying to me as I have a desk job and my groin and thighs really start burning and tingling more when sitting. Is yours worse when sitting?


Sat Jan 05, 2013 12:43 am
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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.
Hey Flamin mate,

Yes that's it very sticky clear /cloudyish fluid. Sometimes quite bad during after the bowel movements ( it only happens then) I've found that after a long drive or not ejaculating enough its at it's worse. The leg cramps inner thigh pain seem to be persistently there. Along with testicle ache on one side and some abominal discomfort.

My urology letter arrived just now! It says the Uroligist wants me to have semem and blood and urine tests as well as Flow test for bladder and wants me to fill out a time and amount of urinary frequency chart over the next 7days. It's a One stop Fast track urology test it says to get me a faster diagnosis.

Woke up this morning after a good sleep and legs feeling like they are on fire / but shaky and dull horrible ache in them. Visiting the toilet has and always will be the worst part of my day, as after the bowel movement I will have all the syptoms as described above. The discharge will trickle out over the next few hours causing me to urinate (or try to urinate) the rest of the day.

But to be honest I'm just realy happy that I have another urologist to see this week.

Hope you guys are hanging in there all my best
England


Sat Jan 05, 2013 8:20 am
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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.
Hey again everyone,

So I just started my chart of amounts of urine / what I have drunk & at what time I urinated.
Everything was going ok 1st urination of the day was fine. But then I had a bowelmovement and collected the urine
In a measuring jug, the urinate was tinged with green and was extremely cloudy 125ml. I recorded the results on this chart and photographed the jug contents for the urologist. My penis discharged sticky liquid for around 10mins after - even dribbling this fluid down my legs. Very much looked like seminal fluid with the same viscosity and texture. No smell or pain.
Legs also aching and burning and I now feel the need to urinate every 5-10mins with little or no urine being expelled.

Going to have a hot bath now as this eases the symptoms.

Post if you can - il keep updating all the time, hoping a miracle cure can be found with all the data I'm collecting to present to the Uroligist.

Cheers guys


Sat Jan 05, 2013 10:48 am
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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.
Hey everyone,

I've seen my employers and GP today and placed on sick leave for a period of 3months pending investigation.

I have had many many cultures and urine tests privately and with the health service. Although after doing some research I've found only the HIV & Hepitatis were the PCR DNA type. So due to the symptoms I can only conclude that it may well be a bacteria agent that is causing the prostatis. Either that or a nerve issue surrounding the prostate itself. I'm no doctor or urologist but as your all aware it's not the most well know or researched problem.
So I've decided to ask for these tests to look deeper to find the issue. As well as a blood culture.

If all fails I'm going to turn to a private prostate clinic and seek their advice and treatment to cure this problem. Injections seem the way forward, mycoplasma testing and ureaplasma testing was urine tests last time and I was tested twice, as well as Herpes l & II blood tests all negative after 18mnths. But as usual I'm just panicking again, legs burning weak and frequently pissing with the usual discharge at BM.

Cheers for reading. Would like to hear from dudes who have tried injections and had more detailed searching tests

All the best


Tue Jan 08, 2013 2:35 pm
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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,

I'm at the urologists tommorow morning. From 9am untill midday. Any suggestions/ testing/queries or things u think I should bring up? Taken me 12weeks to get this chance so I want to be armed to the teeth with help/advice and forum questions. I want to come away from tommorow with anwsers - if you have anything atall u need help with or on my case please post it before then. I have complied a portfolio which I can add to and present to the Uroligist.

All my best dudes and thanks


Thu Jan 10, 2013 1:16 pm
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Joined: Thu Dec 06, 2012 8:17 pm
Posts: 10
Post Re: I really am suffering......please help if you can.
I did a symptom spread sheet on excel .

So date on the left then :

2/2/12 - burning started
12/2/12 - one course doxy
15/2/12-- slight improvement in burning

etc

Then when you sit down you rattle off everything in ten mins .
Doctors love structure , and its hard for them to ignore when its in a EXCEL sheet .. good luck !


Thu Jan 10, 2013 4:18 pm
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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.
Hey again everyone

Not sure who's following these posts but I'm much more happier after today's Uroligist visit...

Did the flow and urine tests, all ok apart from low stream flow, which both the Uroligist and myself already knew.
Explained all my syptoms with dates and timings and then he did a testicle exam and a DRE. Adominal check and a good good look over my history spanning almost 2years now.

He was without doubt the nicest and most knowledgable doctor I've seen yet. He covered all the bases, he has booked me a pelvic MRI and for a general anesthetic to perform a "vigorous prostatic massage & secreation of prostate fluids to test for unlikely "bugs". He has also referred me to the physiotherapist for "pelvic muscular disfunction" explaining that his diagnosis of CPPS & Chronic prostatis is the only reason for my problems. He has also hinted at the idea of a biopsy and a futher cystoscope examination after he viewed the previous report which stated a "small growth on the upper left side of my prostate. He debated the idea of futher antibiotics but wishes to see the test results before doing this, a good idea. Failing that he has insisted on me using Amytript at an increased dose to counther the bad sleep patterns and leg pains.
He also explained a lot about pelvic floor dysfunction and insisted that this disorder with proper rest , STRESS FREE attitude and a good set of pelvic exercises with good fluid intake and healthy diet will pay dividends in perhaps not freeing me entirely from this knightmare but certainly making it far far more managable. Overall he was I felt the best discriptive and sympthetic towards this grief I've been getting. But did not rule out even if no "bugs" we're found in trying antibiotics at all levels to see if any improvements follow.

I've left much more oppertmistic and hopeful that I can get feeling better. I've given up on the reasoning or as to why I was inflicted with this nasty prostate /pelvic dysfunction and I'm concentrating on just getting damn well and trying to relax much much more, why worry when worrying makes this stuff flare up and make u feel like crap? He said Anxiety and stress are huge factors that play a evil hand in this problem.


All the best dudes


Fri Jan 11, 2013 12:46 pm
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