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 I really am suffering......please help if you can. 
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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 posted before stating I have had almost all the exact symptoms as you. Your pain and or tingle/burning sensation in your legs, does it increase when sitting? I have had hypersensitivity in my groin and legs ever since the beginning. My thighs all the way to my feet tingle like tv static looks. I think it's due to nerve endings in the prostate. Not to sure though. But I also think anxiety sometimes too because I feel it mostly when I'm stressed but it is for sure something physical becuz when I sit my legs light up and are relieved when standing. My scrotum skin is also really really red and tingles and burns. I have been diagnosed with contact dermatitis and prostatitis no test have showed anything. For some reason I think it's yeast or fungus even tho no OTC creams have worked. Stomach totally messed up horrible gas and unusually bowel movements with discharge clear and sticky from penis. My meatus is constantly red and swollen. Things have calmed down but are still very distracting and annoying. I'm just hoping this will eventually go away someday on its own. Its been 13 months of hell, anxiety over this has really messed with me.


Thu Oct 18, 2012 1:27 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.
Flamin,

Mate whatever it is that you have mine seems to be exactly the same. It's nasty and very dibilitating - I've struggled greatly over this for 18mnths now.
I found that its best not to manipulate your urethral passage by "milking out" the discharge after bowel movements. It just irritates more. Also don't keep examining your penis, u will develop soreness and redness and it leads to more anxiety.
As for the weakness and pain that "radiates" down the inner thighs and the burning sensations I visited a neurological consultant. He took quite a few not so common blood tests and also did a nerve conduction test. I have been asked to return to him this month, so I'm keen to find out if this yields any answers.

Failing this, I realy don't have many ideas. Pelvic floor muscle weakness is also a possibility, I remember way back when this started I was lifting some insane weights, so I may consult a physiotherapist, also il take yet another urine/microbiogical sample/s for culture and testing again.....but that will be more for my anxiety as I still feel I have contracted some STD due to the exposure I had around the time of developing my problem. But after 18mnths and numerous repeated STD tests / bloodwork/ urine and semen cultures....I think I will soon give up, it's pointless, but my anxiety certainly isn't going anywhere. It's a major factor I think.

I'm sorry I can't give you any answers either man - I just don't know what to try next......

All the best


Sat Oct 20, 2012 3:20 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 have all the pain down my legs as well . Pain everywhere from the back to my ass . Penis to my legs, my foot was hot at times. Beyond horrible!!! All the leg pain and thigh pain went away after i had my third round of injections .I have been all over. Its not your back or nerves or anything. I hurt all over my body for years . Felt like i had the flu alot . Burned from my ass to the tip of my dick. All that has went away after injections . The prostate is the center of the man and it can destroy your entire being ! im 95% better sometimes 100% i still get injections every now and then. its been 8 months since my last round. As for anxiety as long as i dont hurt i have no anxiety plain and simple ! Dont need a shrink ! Dont want to kill myself ! Doctors need to get on board with injections. After you have had this hell for sometime nothing penatrates the prostates but injections. This is just my story ! I get so disgusted reading everyone, like myself going from one doctor to the next spending tons of money and time and still living in hell . ITS NOT RIGHT! Good Luck To All ! Peace And Light!


Sat Oct 20, 2012 1:18 pm
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Prayer and faith

What are the injections you find helpful?
Cheers


Sun Oct 21, 2012 4:51 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.
here is a link to Dr. Bahn He saved my life! http://prostatitis.org/redirect.php?lin ... treatment/

Peace And Light!


Mon Oct 22, 2012 10:56 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,

Has anyone in the united kingdom tried these injections?
It's not common I don't think.

Please post if anyone has / or has had the injection procedures.


Wed Oct 24, 2012 1:30 am
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Joined: Tue Oct 30, 2012 8:39 pm
Posts: 1
Post Re: I really am suffering......please help if you can.
TO ENGLAND

I think you could have cipro poisoning. Google cipro is poison.
Talk at ya,chad


Wed Oct 31, 2012 4:29 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 man,

Yes I've asked the urologist about the cipro - they deny it could cause it?

I keep worrying and have now for almost 2yrs that I contracted a Sti/std but after all my negative results,
And damn googling keep making me worry constantly as doctors are not giving me any answers. I keep worrying thinking the worse and I'm so worried for my partner too. So I'm booking my ninth std testing I think, I just keep worrying
And worrying......if my partner has a head cold or aches I just feel sick ......terrible place I'm at now.


Mon Nov 05, 2012 1:53 pm
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Joined: Sat Nov 10, 2012 1:46 pm
Posts: 6
Post Re: I really am suffering......please help if you can.
Have the antibiotics ever made a difference? In my case the right antibiotic will relieve my symptoms which is proof bacteria are involved. The offending bacteria tend to be sequestered deep in the prostate. According to data compiled by Dr. Polacheck, it takes a vigorous prostate massage several days running to have a good chance of getting bacteria to culture. I have sometimes been able to get bacteria out in the EPS but sometimes not. To succeed at this it is best to be off of antibiotics for some time, 3 weeks if possible. Also, the bacteria involved are not likely of the "STD" type. In my case they are an enterococcus and a staphylococcus epidermidis, which is not even regarded as pathogen by some doctors. The laboratory needs to be instructed to culture *any* bacteria found, and type and sensitivity test them. There is a tendency to disregard "normal" flora, not understanding there is no such thing as normal flora deep in the prostate.


Sat Nov 10, 2012 2:40 pm
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Joined: Sat Nov 10, 2012 2:33 am
Posts: 2
Post Re: I really am suffering......please help if you can.
Hi England. I've just read over your ordeal. Doesn't sound fun at all...

I'm not a doctor, but the fact is that the Doxycycline worked while you were on them is a good sign. Just because the cultures are coming back negative doesn't mean there isn't an infection. Your GPs/Urologists need to apply an empirical approach to this. If the antibiotics worked then there is an infection. Your Inner thigh pain post the Doxycycline may have just been a side-effect to it, or just another symptom of the Prostatitis. It normally takes 4-6 weeks worth of anti-biotics before all symptoms completely disappear.

The fact that your symptoms presented after a sexual encounter seems to suggest that you probably have a form of Chlamydia infection in your prostate rather than a gram + or gram - infection. As such, I suggest you try Clindamycin (http://prostatitis.org/redirect.php?lin ... cology.htm) or go on the Doxycycline for a much longer period

The other pains/aches in your arms and legs are most likely due to a side effect of the Ciprofloxacin. Quinolones have a long list of side effects and Ciprofloxacin only stops bacterial growth rather than kill the bacteria so it's possible that due to your low immune system your body wasn't killing off the infection. Another Quinolone you can try is Norfloxacin which has worked for me (while Cipro didn't seem to do anything for me). When you meet with your GP next, I think you need to start pushing to go on antibiotics. The fact is that they did reduce the symtoms previously so there's a very good chance they'll work again.

If you have time, I suggest you read this post. Sounds like this guy had very similar symtoms to you and was able to cure it with Clindamycin.

http://prostatitis.org/redirect.php?lin ... /bill3320/


Sun Nov 11, 2012 3:18 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 mate

Well I'm visiting the urologist tommorow for "pain management and nerve block studies?"

But I think il be insisting on a forced prostatic discharge culture and push to be placed on an extended
Course of Doxycycline. The cipro was certainly a bad bad choice for me and has left me not so well.

Still experiencing heavy urethral discharges with bowel movements so perhaps some stool softeners also.

My last 3 semen cultures have come back with "Normal Skin Flora" so this time I may ask that the screen be widened
To exactly what is in my semen in detail.... To yield a possible offending bacteria.

Failing all of these - I will attempt the other stronger anti biotic and push through the side effects and hope that this knightmare ends. It's totally soul destroying and effects every thought of each day.

Many many thanks for everyone who has posted - keep well dudes.


Sun Nov 11, 2012 1:20 pm
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Joined: Sat Nov 10, 2012 1:46 pm
Posts: 6
Post Re: I really am suffering......please help if you can.
Staphylococcus epidermidis is so named because it is "normal skin flora" but that does not mean your immune system will be non-responsive to it inside your prostate. Nor should it be, since otherwise the bacteria would be quite happy to go on multiplying. In any case it is a champion biofilm builder and has been implicated in chronic prostatitis. See here:
http://prostatitis.org/redirect.php?lin ... 0659.x/pdf

"Bacterial strains were isolated from patients aged >18 years with symptoms of CBP NIH-II, present for at least 6 months. ...From these well-characterized patients with CBP (NIH-II) a population of bacterial strains causing the infection was isolated. A total of 150 bacterial strains were evaluated: 50 E. faecalis; 50 Staphylococcus spp. (three Staphylococcus aureus, 23 Staphylococcus haemolyticus, 10 Staphylococcus epidermidis,...)"

So declarations by the lab of "normal skin flora" are unacceptable. Those bacteria need to be typed and antibiotic sensitivity tested.


Sun Nov 11, 2012 4:03 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.
Just a short word. I have had prostatitis for 15 yrs.
Before I knew what it was my buddy told me he had the same pain coming back from Nam in 69.
Stress caused it for him.
I now know with the advance of my problem the past 3 yrs. after losing my wife at an early age and now
having to deal with a mom with Alzheimers, stress plays a big big roll.
All I want to say is, I wake some times maybe at 12 am and know I can't sleep so I take 1/4 dose of Xanex.
Guess what, even the next day I have no pain. STRESS RELEASE is needed in any way shape or form.
I just read Dr. Wise P,HD on this front home page and he confirms it to me.
What out brothers ! STRESS IS A KILLER.
I also use Advil if pain gets real bad.


Sun Nov 11, 2012 4:04 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.
I just worry extremely as I don't want to pass anything onto my girlfriend.
It pre-occupies my thoughts daily. So much so that I've asked her to accompany me to get
Checked out at the std clinic this week also. I KNOW the tests will be negative on all counts

But the worry is just overwhelming and I need to make sure , but as for the urologists how would you guys
Suggest I proceed from here? ......the urologist dept I see are not interested in my concerns - they dismiss everything I say, even when I say "I'm having urethral discharge on bowel movements" they say it's not a syptom of Prostatis it's the CIPRO!!!! :-(


Sun Nov 11, 2012 5:08 pm
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Joined: Sat Nov 10, 2012 1:46 pm
Posts: 6
Post Re: I really am suffering......please help if you can.
If the doc is not taking you seriously it seems to me you need to find one who does. It may require travel and spending money. To say that your urethral discharge is due to the cipro is completely nuts. Be that as it may, cipro has its share of side effects and if it is not helping you there is no sense in taking it.

The other alternative to the uncooperative doc is to do it yourself. If the doc is unwilling to put you back on the doxy which was helping you there are plenty of places on the internet you can order it from, although I don't know how UK customs is about letting such through. Veterinary supply is another possibility. But the best alternative is to go to a prostatitis specialist, many of whom are listed on this site.

If were going to pass anything on to your girlfriend most likely she would be already symptomatic, since the STD clinic has already ruled out the kind infections that would be asymptomatic in women.


Sun Nov 11, 2012 10:18 pm
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Joined: Sat Nov 10, 2012 8:04 pm
Posts: 1
Post Re: I really am suffering......please help if you can.
England. Was the sex you had with the person anal or vaginal?


Tue Nov 13, 2012 5:04 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.
It was vaginal intercourse protected, one week after
I developed the syptoms of epididmitus, and eventually prostatis
Symptoms. Never anal.


Tue Nov 13, 2012 5:23 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.
I decided against re visiting my consultant urologist and will ask my doctor for a referral to another urologist.
I will also be taking urethral discharge samples and urine in for culture this week. I will be insisting on a full write up of
ALL bacteria found in these tests (normal skin flora is not acceptable) - and also sensitivity testing to find the most suitable antibiotic to try.

Hot baths & no spicy food help me a little

Cheers everyone and thanks - il continue posting as my results and updates arrive


Tue Nov 13, 2012 5:33 pm
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Joined: Thu Oct 18, 2012 10:06 am
Posts: 9
Post Re: I really am suffering......please help if you can.
Hi England

How are you getting on mate, i am in England to struggling with similar symptoms under the same diagnosis as you, chronic prostatitis / cpps.

I have tried all the medications you have for long periods of time all to no avail, even the amitriptyline dont help me much at all.

I have constant burning in my bladder and penis, frequent painfull urination and low bladder volume of 300ml due to the pain it causes when filling. I have reduced urine stream and reduced amount and force of ejaculation plus pain with erection and pain after ejaculation normally, the worst of it is with this i get aroused so easily its ridiculous! My whole groin area feels painfully cold with a weird pressure feeling which produces a need to pee sometimes just by coughing/ shifting position, breathing etc.........this really is horrendous and as you i am getting nowhere with the NHS, bowel movements are no fun for me either causing rectal pain for hours after.

I am currently only taking co-dydramol for the pain as nothing else has helped.
This has ruined my worklife , social life and sex life and i am only very early 30s so like you i am very distressed with it, i have had it on and off quite mild for over a year till march this year when they did a cystoscopy and it went terrible since then and hasnt settled since. I feel like i am being fobbed off by my GP and my urologist just saying i have to learn to live with it and time is a healer. Anyway mate let me know how you are, i think it would help both of us to talk about it if you are willing mate, i am an ex pads brat was brought up with the army so have a but in common there to!
Take care mate
Dan


Thu Nov 29, 2012 8:30 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.
Dan, hey mate

Yup it's a knightmare mate, I'm trying my hardest at the minute to just stay on top of it and not let it get me down man,
I have another urology appointment coming up soon, and another GP visit this Monday. Il
Be asking her to take another discharge culture and a blood culture to see if that yields anything?

What meds you tried mate? And what's your syptoms ? Leg pain weakness/arm weakness/ difficulty urinating / inner thigh pain and urethral discharge are my main ones.

Yup I'm dosed up on 100mg of Amytript and tamsulin - neither are helping atall man.

My 12th STD /STI tests all proved negative again - so I'm
Dismissing that route of enquiry now......

Let me know bro, sure we can solve this with some hardwork, I'm suffering a little from the Cipro I took also, it's played havoc with my legs and arms causing severe bruising and no weakness. Tbh I feel worse now than ever.

All the best man - was ya based out in Germany? I'm down in Hampshire now.


Thu Nov 29, 2012 11:22 am
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Joined: Thu Oct 18, 2012 10:06 am
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Post Re: I really am suffering......please help if you can.
Hi mate

I was born in Germany in BMH Munster (closed now!) in 1981 and stayed in various places in Germany till my Old man was posted back to the UK in 1997, then on to Northern Ireland for 2 years then back to Germany for a few then i finally settled in England when i met my wife and got married, best years of my life and something i look back on now with very fond memories! I live in Suffolk now.

My main symptoms are, pain in the groin which changes all the time, sometimes a pressure feeling sometimes a stabbing cold pinching feeling, the pain makes me want to urinate all the time which also hurts and i always feel like i need to go and cant hold much without the pain building up, its really distracting and i find it difficult to concentrate on anything for very long. I also get leg pain and pain in my rectum after bowel movements, the leg pain is more if a generalised ache through my arse cheeks down my legs, i cant say i have had arm pains but i am really tired most of the time which makes me feel bad anyhow. Also painful erections and painful ejaculation and pain for days after which is a right bummer.

Meds i have had are:
Amitryptyline only up to 40mg didnt help much
Tamsulosin for about 4 months did nothing (made ejaculation a nightmare and i think it made the burning in my penis worse)
Solifenacin for overactive bladder did nothing
Urispas for urinary tract pain......did nothing
Ibuprofen and paracetamol taken all the time helps a bit
Cocodamol up to 30/500s just made me feel like a zombie so dont take them
Just taking Codydramol in the last few weeks which helps with the pain a little but nothing has ever helped the urinary pain or frequency which is my biggest issue.

Antibiotics i have tried for long periods of time are
Cipro 1 3 month course 2 years ago and 4 months from march this year didnt help but no side effects
Doxy didnt help gave me severe headaches and made me worse
Co Amoxiclav didnt help gave me bad guts
Amoxicillin, helped last year on 2 occasions gave me a few months of normality each time but hasnt worked since and i have just finnished a months course a few weeks ago.

I have had blood tests, urethral swabs, semen cultures and been to STI clinic, nothing has ever been found

I have also had flow rate tests which are always bad, an IV urogram which was fine, ultrasound which shows i retain about 50ml after urinating which they so is normal and 2 cystoscopy procedures in march and june this year.
The first cystoscopy found a benign urethral polyp which they thought was the cause of all this but everything has got worse since the yanked it off ( while i was awake ) and the second cystoscopy the did because of all the incresed symptoms got so severe just showed inflammation, they wouldn,t say where or how bad so this is where i am now, i wish i had never had either cystoscopy because my consultant now thinks the polyp was incidental and not actually causing my problems so they have diagnosed Chronic Prostatitis / CPPS even tho they say my prostate looks and feels fine. I dont know where to go with this anymore but am back at the urologist in December and have my first pain çlinic appointment next week for what good it will do because i am sure i have had all the hard stuff already. I am also looking in to hypnotherapy.

I have also been advised to adjust my diet but i dont think it makes much difference but for me beer seems to make it all worse which again is a bummer.

How are you getting on with work? I have been off since march which is causing problems and most days feel at my wits end but i am trying to keep going for my family and hoping one day i will improve to a point where i can start doing more again. This is the a horrible thing to put up with and everyone seems to have different symptoms but it all seems to come under the same thing. Do you have any problems with intercourse at all?

Keep going we will get there in the end
All the best
Dan


Thu Nov 29, 2012 4:26 pm
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Joined: Fri Mar 23, 2012 5:18 pm
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Post Re: I really am suffering......please help if you can.
Holy Moly mates !
I read some posts and see how fortunate I am. I have had this for 15-17 yrs. now and the last 2 have been worse.
I guess as time goes on it gets worse.
All the chronic pains in the penis/groin.golf ball in rectum etc.
My 1st bout sent me to ER 17yrs. ago with unbelievable pain in the pelvic area.
Anyway, I too had burning in the penis head. Thought I had UTI.
Maybe so and I swear it was from taking Flomax for 2 months.
I took it for an experiment again since I had some in stock.
Retro ejaculation I believe gave me UTI so I took Cipro for 2 weeks 200mg.(I had that in stock too) :-)
It's better.
Now, I was on Cardura my Chinese Dr. put me on 1 1/2 yrs. ago and it worked good.He also tells me to do the Saw Palmetteo with it.
So I went back on it last week and the stream has been good again.
No side effects from this drug.Google it.
But I still pee my brains out all day long. More when I am home. I guess cause I know I am near a bathroom so why not.
I read on here how ejaculating helps with the pain so I tried it and I think it subsides to a degree, but I know when I am hot and heavy on a weekend going at it 2 times a day for 2-3 days (with my wife may I add) really gives me a ball pain. But I always said this is how I wanna die ! Just kidding mates.
I could go on and on but just wanted to let you know about the Cardura verses FloJack


Thu Nov 29, 2012 10:32 pm
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Joined: Thu Oct 18, 2012 10:06 am
Posts: 9
Post Re: I really am suffering......please help if you can.
Hi Parrotnotes

Have u been really bad for 17 years or has it come and gone? Does it stop you from doing what u want with your life like working, socialising going put etc.

This is severely interfering with my life at the moment to the extent i dont go out much or do the things i used to enjoy, i am hoping i will get a little bit better to atleast get some of my life back.

Take care mate
Dan


Fri Nov 30, 2012 3:23 pm
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Joined: Sat Nov 10, 2012 1:46 pm
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Post Re: I really am suffering......please help if you can.
dannyb: The only clue in all of this is that the amoxicillin helped. There are a lot of other antibiotics in the same general class - the "beta-lactams" - many different penicillins and cephalosporins, other than amoxiclav/augmentin. Maybe you can get your provider to try some others. You should also try Macrobid (Nitrofurantoin) which will kill most bugs present in the urine.


Fri Nov 30, 2012 3:47 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.
Dan,
My 1st bout was 17 yrs. ago and almost crippled me.
Then it let up for some time with and I only felt minor pain
that I attribute to stress. But the last 2-3 years I found myself
needing to urinate much much more to the point I never pass up
a bathroom when Im out and about. So my prostate is swollen.
I found out that Prostatitis gives a false PSA reading as well and
mine jumped from a 3.1 to a 5.1 in 2010 so I went and insisted on a PCA3 test
which also tests for cancer but of course the U dr. wanted to do a biopsy ($$) and
I knew better that it causes 7 out of 10 men to get an infection.
So my test came back neg.
I now the past 2 yrs. have had more pelvic headaches,some bad some not too bad.
It never stops me from doing anything as working etc. I would take many things to
help subside the pain, IB's, Xanex, Booze,
So anyway, I seem to get most of the same traits the guys have here on this site
but I am sure a lot of men here have it worse then me. And yes, I hope mine never gets that bad but....
I have had down days with depression from it if you no what I mean.
But more better days then bad. This site helps me a lot and I try many remedies they talk about.
Even ejaculations and hope I don't go blind now. But too much sex (with my wife) does aggravate it sometimes.
I did it last nite then this morning and so far I am good. By Sunday/Monday I may start feeling lousy.
Well, hope I answered your questions and maybe others can get something from this.

Bruce


Sat Dec 01, 2012 5:54 pm
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