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 Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC, etc 
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Joined: Mon Jun 11, 2018 1:43 am
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Post Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC, etc
Hello All. Like most of you, I have been through the ringer of doctors that do not have answers for a long time. 10 years ago, I was diagnosed with chronic non bacterial prostatitis and would have flares helped by a month of Cipro. Whee. Then I was flare-free for a couple years. Now, for the last 18 months, I have something different and I would GREATLY value your insights/ideas/thoughts.

34 White Male, non smoker, light drinker. What happens to me is this: Swelling, redness, and irritation of meatus/urethra opening within 2-24 hours after sex or masturbation. The lower part of the meatus area (near the frenulum) seems a darker color as well. Has happened 6-7 times since beginning of 2017. Only known changes at that time was switching from Cymbalta to Viibryd (depression and anxiety since a teen) and a new partner (has tested clean for STDs). Oh,
EDIT:This may or may not have bearing, but this all started up after my first case of balanitis, which was caused by unprotected anal sex with my (now) fiancee (we all make stupid choices at times).

Usually feel better in 2-3 weeks with meds (cipro, with and without diflucan) or without meds, but ejaculating during this flare makes it last longer (had sex and masturbated twice during current "flare", going on 9 weeks of length). Occasional minor discomfort after urinating, especially when the urine is more concentrated. No discharge or itching. Dull ache and occasional sharper pain when touched around the opening, around the backside of glans, and sometimes a bit down the shaft. Also have slight red rash on upper head/glans that is more prominent after sexual activity or the shower - not itchy, not scaly, no bumps - just there. Fairly constant sensitivity in the glans, more noticeable after urination for a while and for hours after ejac.

Urine and blood tested neg for chlamydia, gonorrhea, syphilis, trich, hep c, HIV, and e coli. Cystoscopy in November found nothing except a soft stricture 16 FR in proximal urethra. CT in November found nothing (except a 19mm kidney stone. Two procedures to get rid of that. Scope during kidney stone procedures found same stricture description). Multiple DREs found nothing off about prostate.

PCP thought urethritis (but no discharge or pain when urinating), yeast (not itching, on a no-sugar diet, meds did nothing), so out of ideas. Urologist out of ideas, except to use more lube (using same amount as I have my whole life, though this did start after being with a new partner for a couple months). Dermatologist said contact dermatitis, gave me hydrocortisone 2.5. Didn't help. Gave Eucrisa. Didn't help. All specialists basically said that they could not see anything physically wrong. Recommended using condoms and lube. Saw another Uro this month - did basic physical exam and heard my history, said Interstitial Cystitis without a beat. Now it may be possible, but I do not have the typical IC symptoms - urgency, frequency, night urination, pain with bladder filling, obvious trigger foods, etc.

Went to ER beginning of May with "epidydimitis" - swelling, discomfort, and some shooting pain in upper right groin area and right testicle. Ultrasound of testicles was fine. 2 weeks of Doxy for this seemed to help.

Also noticing more urine dribbling after every time I pee. Stop peeing, but get between 4-6 drops worth up to a small weak stream within a minute after finished. Gets a bit better when not flaring.

Have been seeing a pelvic floor physical therapist. Found some painful points in hip adductors, perineum and a couple other spots on teh outside, nothing internally. And these spots hurt, but did not cause any pain in my penis.

During this whole time, I have used: Cipro twice, diflucan 3x, nystatin cream for balanitis, nystatin oral, uribel, azithromycin, moxifloxacin, (doxycycline for the epidydimitis).

At this point, I have an appointment scheduled with a pain-related neurologist and an appointment in september (1st available!) with an IC specialist at a top 10 urology hospital in the United States (second opinion).

I have a few random longshot thoughts, and will highly value your thoughts on these and anything else I have not thought of:
Some/most of these flares have occurred within two weeks after feeling guilty about something in life, either sexual or relationship based, or under a solid amount of stress. Perhaps I need CBT/anxiety medication (psychosomatic symptoms)? Granted, I have been under major stress before in life and did not have this happen.

Thinking it could be a rarer infection/virus that hasn't been tested for as of yet, such as entero, ureaplasma, herpes (no lesions or obv. symptoms), or similar. I want to curl up in a ball thinking about a swab (they almost had to cancel my cysto because the numbing medication swab made me scream, cry, and shake for 5-10 minutes), but would take urine/blood tests no problem.

Could it be referred pain from the pudendal nerve, sacroiliac joint issues, or spinal misalignment?

Thank you in advance with my whole being.


Last edited by Darty17 on Tue Jun 12, 2018 1:18 am, edited 1 time in total.



Mon Jun 11, 2018 2:30 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
I dont want to sound like a broken record, but i suggest microgen lab for pcr and dna tests of semen nd urine. Then you can rule out bacteria or fungal as they test for everything. I have EXACT symptoms...red meatus after ejaculation and redness of penis head. My results came back neg for every std including myco and urea. I do have high ecoli and a few other bacteria is semen that could be issue. But now i know its not fungal or any std which is a relief.


Mon Jun 11, 2018 10:14 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Yeah, I was thinking that was the route I will need to take. Convincing my PCP or uro to order the kits will be a challenge though.

Have you started treatment for your results? If so, any luck so far?


Mon Jun 11, 2018 12:21 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
I have an appointment on thursday with an infectios disease microbiologist. I will update you with what he says.


Mon Jun 11, 2018 8:20 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
FYI you don't need a doctor to order the kits for you, microgen will ship them to you directly for $20 / kit so $40 if you do urine and semen or $60 if you do urine, semen, and EPS.

All your doctor needs to do is fill out the order form that comes with each kit, and maybe help you collect EPS if you're not able to do a self prostate massage with your finger or a prostate massager. You can collect urine and semen on your own in private and ship it all back to microgen using the prepaid return labels in the kits.

Because they do DNA sequencing and PCR instead of bacterial growth cultures, time sensitivity is not a problem (their customer service reps told me this). Most old school bacteria cultures need to be started within 24 hours or the bacteria may die, but PCR next gen DNA looks for the unique DNA of up to 25,000 bacteria and fungi in your samples which requires no growth of bacteria.

The test costs $199 / kit so it's $400 - $600 depending on if you do 2 or 3 samples, plus the shipping mentioned above, but the peace of mind and knowledge is probably worth the price. I haven't ordered mine yet because I've been gathering info but I plan on doing it soon.


Mon Jun 11, 2018 8:58 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Freakin- To help me understand, why are you seeing an infectious disease doctor instead of a urologist or your primary care physician? If you have the results and the recommended treatment, why go that far? Asking so I know if I will need to go that route.


Tue Jun 12, 2018 12:41 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
ManOutOfMind wrote:
FYI you don't need a doctor to order the kits for you, microgen will ship them to you directly for $20 / kit so $40 if you do urine and semen or $60 if you do urine, semen, and EPS.

All your doctor needs to do is fill out the order form that comes with each kit, and maybe help you collect EPS if you're not able to do a self prostate massage with your finger or a prostate massager. You can collect urine and semen on your own in private and ship it all back to microgen using the prepaid return labels in the kits.

Because they do DNA sequencing and PCR instead of bacterial growth cultures, time sensitivity is not a problem (their customer service reps told me this). Most old school bacteria cultures need to be started within 24 hours or the bacteria may die, but PCR next gen DNA looks for the unique DNA of up to 25,000 bacteria and fungi in your samples which requires no growth of bacteria.

The test costs $199 / kit so it's $400 - $600 depending on if you do 2 or 3 samples, plus the shipping mentioned above, but the peace of mind and knowledge is probably worth the price. I haven't ordered mine yet because I've been gathering info but I plan on doing it soon.


Thank you for this great information. I messaged my PCP today, and he is willing to sign the "order", but admits that if he cannot understand the results, that I would need to find someone else to help me. From what I see on their website, it should be somewhat easy to understand.

Going beyond the Microgen testing, do my symptoms and story sound like anything anyone has heard before? The symptoms, the on/off cycle, the constant sensitivity/irritation in the glans (sensitivity especially right after urinating, and for a couple/few hours after ejaculation). Oh, I also forgot to mention (may or may not have bearing) that this started up after my first case of balanitis, which was caused by unprotected anal sex with my (now) fiancee (we all make stupid choices at times).


Tue Jun 12, 2018 1:15 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
i suggest u get prostate EPS test,that will tell u if theres anything there and what it s,have them culture it and sens test,go from there.


Tue Jun 12, 2018 3:20 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Hey Darty, I had very similar symptoms as you and still have some lesser extent. Specifically with the sensitive glans and pronounced meatus. It’s been over 2 years now and the glans sensitivity has calmed down substantially. I recommend getting some tighter soft underwear and avoid boxer shorts or any loose clothing down there. My glans sensitivity was so bad I couldn’t even wear jeans for several months. It was a living hell. I also had frequent burning urination and pain during ejaculation. The good news is that things get better over time, but you have to be patient and stop obsessing over some hidden/cryptic infection. If nothing was found and antibiotics haven’t helped, you should try some of the other treatments mentioned on this forum.

I’ve been through the ringer with antibiotics and tests for every STD in the book. Unfortunately nothing was found and antibiotics didn’t give much relief, if any. I think initially it could have been some kind of NGU, but now it’s more of a pelvic floor issue. I never had high white blood cells or discharge. It’s a long road my friend, but you will get better.

Here are some things that have helped me: the underwear I mentioned, lidocaine gel for the meatus/glans until it isn’t so sensitive, quercitin twice per day, relaxing as much as possible, and staying busy to keep your mind off it. Researching nonstop on the internet for cures and potential causes will cause you more anxiety and depression, so try not to obsess like I first did. It slows down the healing process. Best of luck to you.


Tue Jun 12, 2018 3:32 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
LabMonkey333 wrote:
Researching nonstop on the internet for cures and potential causes will cause you more anxiety and depression, so try not to obsess like I first did. It slows down the healing process. Best of luck to you.

Darty, Lab Monkey just gave the best advice you are going to get. This constant searching and testing for this and that trying to discover who knows what will literally drive you mad. I’ve said before and will continue to say it. The 1st time I dealt with this was over 20 yrs ago, different symptoms but when it comes to prostate issues the number 1 thing is focusing on making yourself feel better. There’s a 98 percent chance that no matter what you might find, and these labs will find something because that’s why they’re in business, it won’t make any difference whatsoever.

You can think you’ve figured it out but you’re more than likely wrong. My 1st time lasted close to 9 months, pissing blood, miserable most days and more miserable because all I did was obsess over every little issue. I learned my lesson the hard way. When it started going away I wasn’t doing anything different other than not doing as much.

In other words when I started finding ways to manage it, and stopped the stress, I got better, and for the record that was the piece of advice I received early on from my Doctors. If I had listened in the early stages I could have saved myself a wasted year out of my life. My opinion will differ from some others here but that’s what makes this place a valuable resource for people looking for answers.

So you know, I’ve had numerous recurrences over the years but none like the first because I learned to deal with the reality of illness. As long as men have a prostate they will be at risk of prostate related problems. That’s a fact. Accept it and manage the best you can with the least amount of time devoted to thinking about it and live your life. My humble advice.


Tue Jun 12, 2018 2:59 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Madcap wrote:
LabMonkey333 wrote:
Researching nonstop on the internet for cures and potential causes will cause you more anxiety and depression, so try not to obsess like I first did. It slows down the healing process. Best of luck to you.

Darty, Lab Monkey just gave the best advice you are going to get. This constant searching and testing for this and that trying to discover who knows what will literally drive you mad. I’ve said before and will continue to say it. The 1st time I dealt with this was over 20 yrs ago, different symptoms but when it comes to prostate issues the number 1 thing is focusing on making yourself feel better. There’s a 98 percent chance that no matter what you might find, and these labs will find something because that’s why they’re in business, it won’t make any difference whatsoever.

You can think you’ve figured it out but you’re more than likely wrong. My 1st time lasted close to 9 months, pissing blood, miserable most days and more miserable because all I did was obsess over every little issue. I learned my lesson the hard way. When it started going away I wasn’t doing anything different other than not doing as much.

In other words when I started finding ways to manage it, and stopped the stress, I got better, and for the record that was the piece of advice I received early on from my Doctors. If I had listened in the early stages I could have saved myself a wasted year out of my life. My opinion will differ from some others here but that’s what makes this place a valuable resource for people looking for answers.

So you know, I’ve had numerous recurrences over the years but none like the first because I learned to deal with the reality of illness. As long as men have a prostate they will be at risk of prostate related problems. That’s a fact. Accept it and manage the best you can with the least amount of time devoted to thinking about it and live your life. My humble advice.


Thank you, LabMonkey and Madcap. I appreciate the time and effort to comment! :D

As I assume you both know quite well, it is challenging to to stop hunting, searching, stressing. At this point, I do not care what label it has. I want to find something that will help me feel better for the longer term. I would love to let it go and live my life - the stress and anxiety have wrecked me and severely damaged my relationship. I am going for CBT in two weeks and plan to see the counselor every week for the next couple months. Even if that doesn't help this issue, it will help my overall well-being, so I count it as a win.

It's especially hard for me to "give up" as I am a researcher and believe in the scientific method. As such, there are still hypotheses to test about what may be causing my issue, so my mind wants to test them. None of the doctors I have seen have mentioned examining prostate fluid or semen, which I find a little odd, nor have I been tested for mycoplasma/ureaplasma. Is the answers to be found in one of these things? Probably not. Convincing myself that itisn't worth examining is a challenge though :(.


Tue Jun 12, 2018 4:08 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
HI DARTY ur an american?.THE usa HAS A BAD RECORD ON PROSTATITIS TO SAY THE LEAST,INCOMPETENCE AND ARROGANCE WOULD BE POLITE WORDS TO DESCRIBE docs ATTITUDE.so please try the EPS way,culture and sensitivity test.use that info and find a good urologist toth or ventura .shockes maybe.get on a plane perhaps,head to manila or greece.thats dependent on your test results of course.could be a few things but get to the bottom of it and then move on.


Tue Jun 12, 2018 6:40 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Darty17 wrote:
Freakin- To help me understand, why are you seeing an infectious disease doctor instead of a urologist or your primary care physician? If you have the results and the recommended treatment, why go that far? Asking so I know if I will need to go that route.


My urologist said he had no clue what was going on and referred me to a infectious disease doctor who also didnt know. My uro asked for me to go back again to i.d doctor and i just happened to get my results now. I have been booked for a few months for this appointment.
Ilia who requested i go to microgen is busy and i cant see him for a month....it just worked out that i am seeing this guy again. BUT, i think he is most qualified to read my results and determine which bacteria is likely causing the issue. I have at least 3 bacteria in semen that could be problem.... e-coli, corynebacterium and bacillus in high numbers could all be the culprit.


Tue Jun 12, 2018 7:28 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Jonjon, yes, I am in the United States. And I would agree with your assessment. The doctors I have been to seem 100% confident in the fact that they have no clue. To top that, haven't found one yet that actually seems willing to continue trying things to see what might turn up. That's why I haven't had a semen culture done yet, or things along those lines. I'm not at the point yet where I could just up and fly to another country for treatments , but if life continues to suffer, it will be something I will consider.

For that matter, if anybody has any doctors that they could recommend and the Southeast, or anywhere within a 500 mile radius of Nashville, that would be fantastic.

Freaking, That makes perfect sense. I would imagine most urologists would not have a clue about things beyond the obvious and more common causes of similar symptoms. I deeply trust virologist that handled my kidney stones, but as far as this other stuff goes, he doesn't have a clue and told me to get a second opinion. I hope that the infectious disease doctor is able to make a determination on what the likely causes, and get you started on a treatment for it. Please keep us updated on how it goes :-).


Tue Jun 12, 2018 7:52 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
All this interest in microgen recently. I'm curious, what do you plan on doing with the results? If it identifies some random bacteria, which you can't even prove is actually causing your prostatitis, what's the plan? You'll be prescribed more abxs. You've already taken a ton of them - Cipro, Moxi, Zithro, Doxy. What possible bacteria could this new test detect that wouldn't have already been treated by the previous four abxs? The constant treatment of abxs, and let's not kid ourselves, that's the only possible outcome of this testing, will lead to far worse problems than your prostatitis ever was. And it won't make it go away. Look at it objectively. What could it possibly find that is resistant to all those abxs that you're already tried? Your only other abx choice is basically an IV of vancomycin and the side effects from that, if you could even find a doc to do it, would be worse than prostatitis. Its a fool's errand. Lab and I have been there so we can appreciate where you're at mentally. We each have to find our own way but it disheartens me to see bros suffering needlessly on these snipe hunts for mythical pathogens.


Tue Jun 12, 2018 8:28 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Well, at the very least i am very confident that i do not have an std like myco or urea that are difficult to test for by normal culture testing. Also, each bacteria i tested positive for come with a antibiotics susceptibility page and i have not taken any antibiotic that is suggested for corynebacterium which was found in high volume in my semen and known to cause prostatitis.
The thought of having an std was killing me but i am extremely confident in these results.
Maybe it leads to a cure..maybe not, but if i dont try every option i will always wonder.


Tue Jun 12, 2018 9:24 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Freaking and Prostate - I completely see both of your points. On the one hand, taking more abx without knowledge that it would specifically treat something found would be stupid. I know that abx can mess you up - I am taking a high quality probiotic right now to try and repair some of the die off from the abx use. So on those lines, taking the "lesser of two evils" makes sense. However, if there WAS a way to find what could likely be causing the issue and address it, my quality of life would skyrocket compared to how it is know.

I have not decided to go with Microgen yet, but keeping it in mind. At the least, I will ask my Uro for a myco/urea urine test, and may ask him for EPS and/or semen cultures as well .Why urologists don't suggest culturing these things is beyond me.......or they may know that it is unlikely to turn up anything, IDK.

I will be VERY interested to see how Freaking's treatment goes and the results.


Wed Jun 13, 2018 1:08 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
FYI - Mycoplasma and Ureplasma urine tests have been shown to only be like 60% accurate, and often need to grow for much longer periods than labs typically tend to run cultures for. Most labs in the US will culture your samples for 1-3 days, and if nothing grows, they say you're all good - but I've read some NIH studies that said Mycoplasma/ureplasma didn't grow until 7-9 days or longer in the study, if it even grew at all.

I'm not telling you NOT to get the tests, but your confidence level can only be as high as the percentage of accuracy, in my opinion. That is ultimately why I am considering microgen - because the 99.9% accuracy of DNA testing in the sample will give me confidence that I don't have any of these obscure STDs. Even if it comes back and says I have something else like ecoli or other bacteria in the prostate that I can't really 'attack' easily, I will still be happy to know I am clear of any STI.


Wed Jun 13, 2018 12:57 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Interesting you mention this starting after anal sex. I've read of other cases like this. I am heterosexul as many of us sound like we are, but I wonder what the issue of prostatitis is like among homosexual males?


Thu Jun 14, 2018 10:56 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
it appears that this type of bacteria isnt about anal sex although that obviously could be a factor it occurs in mostly heteros,the anus and vagina are close so that where and why it happens,that was from a doc.enterics across the board.i thought it may be useful info.


Thu Jun 14, 2018 11:59 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
AC1972 wrote:
Interesting you mention this starting after anal sex. I've read of other cases like this. I am heterosexul as many of us sound like we are, but I wonder what the issue of prostatitis is like among homosexual males?


That would be an interesting study. I bet those numbers are out there, somewhere. I am hetero, and interested for the sake of science.

Anal sex could explain how bacteria normally found in the digestive tract winds up in the prostate.


Thu Jun 14, 2018 12:32 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Ok. Decided that I need to know, so I went and ordered the MicroGen Urine and Semen tests (no one will do a EPS collection and I didn't see it on MicroGen's site). The kits should arrive tomorrow. I hope to send them back tomorrow, as I am leaving town for a week Wednesday. I will update as soon as I know anything.


Mon Jun 18, 2018 11:53 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Crap, forgot to update. Saw a pain/neurologist. Thinks that it might be a different presentation of post-coital migraines. Gave me a light dose of topamax for a month and will revisit. Does not believe that it is a different nerve-related issue. Also started up with my awesome chiropractor again. Xrays show a poor curve in my neck and a hip bone misalignment (one side is 9mm higher than the other), but the vertebrae in the back that house the nerves for the groin area all have great spacing and no clear signs of degeneration. So, likely not a spinal misalignment issue.


Mon Jun 18, 2018 11:57 pm
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
darty sorry to hear of your ongoing problems.may i be brutally honest,well im gonna be,USA urologists are a disgrace and a bunch of charlatans,so far up their own prostates that the cant see the light of day.get some time out.do somewhere u can get a full micro deal thats accurate completely. post massage urine,EPS and also semen.then u know where u r,you have bacterial prostatitis.so yu need to know which bugs r in there,after run a sensitivity test.you know what meds work then.after go to a doc thatll give massage of the prostste to open it up,this will push the bugs out let the wbc in and let abx do its job,itll take a while but thats about the only way to go.try philippines or europe if you have to.theres toronto shoakes perhaps and maybe toth your end but even they have such high regard for themselves ,cant blame them really looking at the local competition.this disease manifests itself in many ways,nerve issues is a good example.good luck and stay clear of the snake oil dealers who think theyre gods in white coats.its all in your head as i cant be wrong!!classic.arrogant incompetence of the 1st degree


Tue Jun 19, 2018 1:34 am
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Post Re: Diagnosed as Chronic Prostatitis, as Chronic NGU, as IC,
Darty17 wrote:
Crap, forgot to update. Saw a pain/neurologist. Thinks that it might be a different presentation of post-coital migraines. Gave me a light dose of topamax for a month and will revisit. Does not believe that it is a different nerve-related issue. Also started up with my awesome chiropractor again. Xrays show a poor curve in my neck and a hip bone misalignment (one side is 9mm higher than the other), but the vertebrae in the back that house the nerves for the groin area all have great spacing and no clear signs of degeneration. So, likely not a spinal misalignment issue.


Did you ever get the results back from Microgen? I'm thinking about using them to test my urine and semen also.


Thu Aug 09, 2018 2:08 pm
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