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Posted

I am looking for a specialist on difficult to diagnose urethritis/prostatitis. Extensive and repeated urine testing negative for any sort of bacteria. It seems that many urologists here are primarily surgeons and not that interested or experienced in treating non-surgical issue like this. So I am trying to find a urologist or maybe infectious disease specialist who specifically has experience with this sort of thing. I am located in Bangkok. Thank you in advance.

Posted

If there is no bacterial infection, this is famously challenging and frustrating.

 

To quote the Merck's Medical Dictionary:

 

"Chronic prostatitis/chronic pelvic pain syndrome

 

Treatment is difficult and often unrewarding. In addition to considering any and all of the above treatments, anxiolytics (eg, selective serotonin reuptake inhibitors [SSRIs], benzodiazepines), sacral nerve stimulation, biofeedback, prostatic massage, and minimally invasive prostatic procedures (such as microwave thermotherapy) have been attempted with varying results."

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Posted

I'm aware of the non bacterial prostatitis. However every time I get symptoms my urine shows white blood cells, they prescribe me antibiotic and in one week the symptoms go away completely. Then in a few months the exact same symptoms come back...

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Posted

Thanks. Actually the urologist currently treating me is on this list. He thinks the problem is an infection because I respond well to an antibiotic and referred me to infectious disease specialist who said he doesnt know what it is and refer me back to urology. I guess I will try another urologist on your list :(

Posted
3 hours ago, voyagerUSA said:

Thanks. Actually the urologist currently treating me is on this list. He thinks the problem is an infection because I respond well to an antibiotic and referred me to infectious disease specialist who said he doesnt know what it is and refer me back to urology. I guess I will try another urologist on your list :(

Dr Umaporn (also on this list)

She works at Sukhumvit Hospital every Saturday about 8.30 (she leaves when there are no more patients,  around 10.00), she also works at Bumrungrad (not mentioned on  the list)

She can do culture from prostate massage, and is knowledgeable about antibiotics. 

 

I have seen many other urologists and infectious disease specialists in Bangkok - all exactly like in your OP.

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Posted (edited)

I have the same condition the OP has off and on for years.  I also have an extremely enlarged prostate. 
The fluid from the urethra was tested. It is non bacterial.  
While living in Bangkok I saw a very good urologist.  He is at Bumrungard Hospital IMG_3966.thumb.png.10da9fc0465958d3357ec2bcc442bb1e.png

Edited by swm59nj
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Posted

I can recommend Dr. Suntchai Wirotsaengthong which is also on the list. He did by far the most diagnostic testing in my case after trying out other urologist before. 

Posted

I can also recommend Dr. Sittiporn Srinualnad, practices at Bumrungrad, Medpark & other BKK hospitals.   If you Google him, you will see more information.

Posted
7 hours ago, swm59nj said:

I have the same condition the OP has off and on for years.  I also have an extremely enlarged prostate. 
The fluid from the urethra was tested. It is non bacterial.  
While living in Bangkok I saw a very good urologist.  He is at Bumrungard Hospital IMG_3966.thumb.png.10da9fc0465958d3357ec2bcc442bb1e.png

Yes Dr Charuspong is good and was recommended by Sheryl.

Posted
17 hours ago, voyagerUSA said:

Thanks. Actually the urologist currently treating me is on this list. He thinks the problem is an infection because I respond well to an antibiotic and referred me to infectious disease specialist who said he doesnt know what it is and refer me back to urology. I guess I will try another urologist on your list ????

I had the same problem as you for many decades, and every time one antibiotic or another would seem to work, only for the symptoms to come back a few months later.

 

So I did some research and it appears that inflammation can be the cause of prostatitis/urethritis and quite a few antibiotics do have an anti-inflammatory effect.

 

On the other hand there are many other factors which come into play, namely a biofilm, under which bacteria are able to "shelter" and which many antibiotics cannot penetrate, as well as the prostate being in itself, difficult to penetrate (and yes I did have prostatic massages to try and identify a bacteria, but to no avail).

 

In desperation I sought out to professors who were looking into this very problem, and had been for some time and the information I got from both of them has worked – – namely Fosfomycin (also called Monural here) and doxycycline to back it up if not it first successful.

 

 

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Posted
2 hours ago, xylophone said:

I had the same problem as you for many decades, and every time one antibiotic or another would seem to work, only for the symptoms to come back a few months later.

 

So I did some research and it appears that inflammation can be the cause of prostatitis/urethritis and quite a few antibiotics do have an anti-inflammatory effect.

 

On the other hand there are many other factors which come into play, namely a biofilm, under which bacteria are able to "shelter" and which many antibiotics cannot penetrate, as well as the prostate being in itself, difficult to penetrate (and yes I did have prostatic massages to try and identify a bacteria, but to no avail).

 

In desperation I sought out to professors who were looking into this very problem, and had been for some time and the information I got from both of them has worked – – namely Fosfomycin (also called Monural here) and doxycycline to back it up if not it first successful.

 

 

Thank you for this very informative reply. The urologist treating me never mentioned testing prostate fluid, each flare up he just keeps testing my urine or penis swab including multiplex PCR for STI, culture and a very expensive test called "16S rRNA bacterial identification" - all negative. I found out about prostate fluid testing from my own research, not sure if maybe he is just not comfortable doing this for cultural reasons or maybe because my symptoms are only urethral (I don't have prostate pain or difficulty/urgency  peeing, thankfully). A week of doxycycline clears up my symptoms completely but then they come back in 1-3 months. So for now I decided to try 1 month of doxycycline based on my own research and see if it works better than the standard 1 week course Ive been prescribed several times before. I guess if this does not work I will try to find a urologist who can do the prostate massage thing and see if can catch the bacteria (if any) this way.

 

If you don't mind do you have reference for the professors who finally fixed your issue? I travel a fair amount so is not necessarily a problem if they are outside of Thailand.

 

 

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Posted (edited)
5 hours ago, xylophone said:

I had the same problem as you for many decades, and every time one antibiotic or another would seem to work, only for the symptoms to come back a few months later.

 

So I did some research and it appears that inflammation can be the cause of prostatitis/urethritis and quite a few antibiotics do have an anti-inflammatory effect.

 

On the other hand there are many other factors which come into play, namely a biofilm, under which bacteria are able to "shelter" and which many antibiotics cannot penetrate, as well as the prostate being in itself, difficult to penetrate (and yes I did have prostatic massages to try and identify a bacteria, but to no avail).

 

In desperation I sought out to professors who were looking into this very problem, and had been for some time and the information I got from both of them has worked – – namely Fosfomycin (also called Monural here) and doxycycline to back it up if not it first successful.

 

 

Another question: if you had good response to some antibiotic followed by a relapse after you stopped it have you tried just using a small dose of antibiotic long term as a sort of prophylaxis against a relapse (provided the antibiotic didnt have intolerable side effects)? Since doxycycline seems to work for me, and doesnt produce any side effects I have considered, as a backup plan, just taking a small dose of it permanently as a way to prevent recurrence, but I cant find any research on this approach.. except for treating skin issues

Edited by voyagerUSA
typos
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Posted
8 minutes ago, voyagerUSA said:

Another question: if you had good response to some antibiotic followed by a relapse after you stopped it have you tried just using a small dose of antibiotic long term as a sort of prophylaxis against a relapse (provided the antibiotic didnt have intolerable side effects)? Since doxycycline seems to work for me, and doesnt produce any side effects I have considered, as a backup plan, just taking a small dose of it permanently as a way to prevent recurrence, but I cant find any research on this approach.. except for treating skin issues

See my post.

Posted

Had a similar issue many years ago, recurring urethritis. In the end the doctor asked ME what i thought would work. The best result previously had been one large dose of penicillin, and i assumed that the antibiotic had knocked out most of the bacteria, but left a few semi-resistant ones behind. So i suggested 2 large doses, taken a week apart. It worked.

 

I would say that taking low doses of antibiotics for a prolonged period is dangerous, as it could result in antibiotic resistance occurring

Posted
On 5/1/2023 at 6:25 AM, rickudon said:

Had a similar issue many years ago, recurring urethritis. In the end the doctor asked ME what i thought would work. The best result previously had been one large dose of penicillin, and i assumed that the antibiotic had knocked out most of the bacteria, but left a few semi-resistant ones behind. So i suggested 2 large doses, taken a week apart. It worked.

 

I would say that taking low doses of antibiotics for a prolonged period is dangerous, as it could result in antibiotic resistance occurring

Pleased that it worked for you, but it was a bit of a "shot in the dark", so to speak.

 

However you have hit on one of the conundrums regarding antibiotics and bacteria, because as the Professor of urology I have spoken to, found out, deep-seated bacteria, especially those behind a biofilm, need longer term exposure to some antibiotics in order for them to penetrate that biofilm, which is why he has had success in this field, prescribing antibiotics over the longer term in some cases.

 

OR by turning to an antibiotic which has been little used over the past decades, namely fosfomycin (which is a broad-spectrum antibiotic), so that any resistance to it is minimal, and that has proven to be the case.

 

I think that's probably why it worked for me, and indeed other research I have found has pointed to the same thing.
 

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Posted
On 4/29/2023 at 5:44 PM, xylophone said:

Okay, some more information for you (and thank you for your kind feedback)....... 

 

Doxycycline does appear to work, HOWEVER, I was prescribed one 100 mg per day for 90 days and sure enough the symptoms went away for about two months or so and then returned, and I tried the same again, and the same thing happened, and also again.

 

I then got a prostatic massage to try and identify any bacteria in the fluid, and none could be found (although I did have another one later and that was the same outcome).

 

I have tried just about every antibiotic and anti-inflammatory, and it was then that I found that two urology professors, one in London and one in Sydney had done a lot of research on this and came up with what they considered to be the best outcome they could find – – fosfomycin (monural) one sachet taken every two days, three times and doxycycline 100 mg one per day for a month. And if there were setbacks in this regime, they advocate the use of Methenamine Hippurate (this is sold over the counter as "Hiprex", which if you cannot find here, can be purchased online from a couple of Australian pharmacies), which acts as a sort of urinary antiseptic if you wish, but they are convinced that this can be a great help, especially for hard to treat infections

 

So I tried that regimen and it worked, and when I got in touch with the Harley Street (London) Professor and told him that the treatment had been successful, he was pleased and said that this was the combination that had been most successful for him and his fellow Professor in trying to beat this urethritis/prostatitis/cystitis type symptoms. However he also said that dogged persistence was needed.

 

I have found in my experience with urologists in the UK, New Zealand and here, that their knowledge of what causes the symptoms is very limited/cloudy indeed, and that is why many of them will go down the route of prescribing the "usual suspects" of antibiotics and because there are newer ones than fosfomycin and doxycycline, very often these are not top of mind and not prescribed. This being the case you can be prescribed a fluoroquinolone (ciprofloxacin is one) which can have quite severe tendon consequences for the patient, or indeed any number of other antibiotics, none of which seem to work that well.

 

If I were in your position I would try this combination of antibiotics and luckily enough fosfomycin is a relatively "harmless" antibiotic and doesn't cause much in the way of problems, and you take one sachet and that will be effective for three days, however they recommend taking one every two days, three times, at the same time commencing the doxycycline regimen.

 

I would give that a try and see how it goes for you, and I'd rather you did that before I gave you the names of the two professors, because they both have very expensive practices and I'm not sure they would like phone calls from around the world, seeking telephone cures, all because they helped me a while ago!! I'm sure you can understand this.

 

By all means come back to me if you need more information, or if it's of a sensitive nature, by all means send me a Private Message. Only too pleased to help if I can.

 

More info for you:- 

-- The presence of prostate stones contributes to the persistence of infection and patients with prostate calcifications and CBP are considered to have a biofilm infection and are more likely to experience relapse following antimicrobial therapy; therefore, prolongation of therapy (as already indicated here) is indicated in these patients.38,39

 

--Urinary tract infections

“A 5-year study evaluating over 19,500 uropathogens and resistance patterns suggests the expanded use of FOM (as the tromethamine salt), among a few others, for acute uncomplicated urinary tract infections (UTI) [141]. Among community-acquired urinary tract pathogens, E. coli is the most prevalent [142]. In a study of 52 patients and in other observations, FOM tromethamine administered once every other day(3g) for three cycles was found to be an inexpensive, effective and suitable alternative in the therapy of ESBL-producing E. coli-related lower urinary tract infection [142, 143]. In the treatment of UTIs caused by fluoroquinolone-resistant strains of E. coli and in regions with elevated ciprofloxacin resistance, FOM tromethamine should be further evaluated as a first-line therapeutic approach due to excellent results [144]. A study on resistance rates showed that FOM showed the lowest overall resistance for E. coli in comparison to amoxicillin, co-trimoxazole and ciprofloxacin [145].”

 

PS. FOM tromethamine = Fosfomycin

the problem has not returned after one such treatment regemine?

Posted
3 hours ago, Dart12 said:

the problem has not returned after one such treatment regemine?

Thankfully after trying fosfomycin, with a backup of doxycycline, the problem has not returned and it has been more than a year now, so I'm very thankful for the advice I got from the professor I contacted.

 

Sadly he recently passed away, so my avenue to him is no longer available, but as I said, I don't have the symptoms anymore, so thank you Professor and RIP. 

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Posted
12 hours ago, xylophone said:

Thankfully after trying fosfomycin, with a backup of doxycycline, the problem has not returned and it has been more than a year now, so I'm very thankful for the advice I got from the professor I contacted.

 

Sadly he recently passed away, so my avenue to him is no longer available, but as I said, I don't have the symptoms anymore, so thank you Professor and RIP. 

I've GOT to give this a try.  I've gone thru a horrible year with this.

I can find this over the counter in Thailand at a pharmacy?

Posted
29 minutes ago, Dart12 said:

I've GOT to give this a try.  I've gone thru a horrible year with this.

I can find this over the counter in Thailand at a pharmacy?

Sold as Monurol® in Thai pharmacies.

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Posted

Fosfomysin is quite commonly used for treating acute UTI in women so is widely available. Its use for treating chronic prostate issues in men is somewhat new but there is good data that it works well (provided your problem is actually caused by a bacteria and not something else).

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Posted
1 hour ago, Dart12 said:

I've GOT to give this a try.  I've gone thru a horrible year with this.

I can find this over the counter in Thailand at a pharmacy?

Yes, and if they don't have it in stock, they can order it for you. 

 

As another poster, voyagerUSA, has said, it was often prescribed for women, especially with cystitis, and because it is a broad-spectrum antibiotic, and there is very little antibiotic resistance to it, it is a useful "old" drug that has been revisited for use in those with cystitis/urethritis/prostatitis by a few knowledgeable urologists, and I am so pleased that I found it/was recommended it by a professor specialising in this field.

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Posted

Just some feedback for those interested in this issue I saw both Dr Suntchai at BNH and Dr Umaphorn at Bumrungrad (she is also at Sukhumvit Hospital I think) for consultation. They both seemed fairly knowledgeable about prostatitis/urethritis issues and understand the nuances of this difficult to diagnose and treat problem. They are both easy to talk to, explain their thinking well, and patient about listening to my lengthy disease history, especially Dr Suntchai. However their recommendations on further testing and treatment were different. One suggested MRI of the prostate the other cytoscopy for example, and their thinking on antibiotics was not the same either. Dr Umaphorn seems a bit more up to date, she knew very well about fosphomycin and suggested it as the next thing to try should my current treatment fail. Dr Suntchai seems a bit more "old school" but he seems very open and willing to discuss and research alternative treatments if you point him in the right direction. For anyone who has this sort of problem either of these doctors are probably among the best that we can do here in Thailand. Please note I have not actually started treatment with either of these doctors yet, these are my impressions from a single consultation.

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Posted
18 minutes ago, voyagerUSA said:

Just some feedback for those interested in this issue I saw both Dr Suntchai at BNH and Dr Umaphorn at Bumrungrad (she is also at Sukhumvit Hospital I think) for consultation. They both seemed fairly knowledgeable about prostatitis/urethritis issues and understand the nuances of this difficult to diagnose and treat problem. They are both easy to talk to, explain their thinking well, and patient about listening to my lengthy disease history, especially Dr Suntchai. However their recommendations on further testing and treatment were different. One suggested MRI of the prostate the other cytoscopy for example, and their thinking on antibiotics was not the same either. Dr Umaphorn seems a bit more up to date, she knew very well about fosphomycin and suggested it as the next thing to try should my current treatment fail. Dr Suntchai seems a bit more "old school" but he seems very open and willing to discuss and research alternative treatments if you point him in the right direction. For anyone who has this sort of problem either of these doctors are probably among the best that we can do here in Thailand. Please note I have not actually started treatment with either of these doctors yet, these are my impressions from a single consultation.

I had the opposite experience with doctor Umaphorn about 5 years ago. She was unfriendly, didn't even give me a physical examination and said I couldn't possibly have prostatitis because I didn't have any pain in my prostate, I only had pain in my urethra.

 

I think she told me to see a neurologist, prescribed gabapentin and I never saw her again. Since then I've seen many urologists and they all agree it's chronic prostatitis but it hasn't responded to any antibiotic treatment. I'll have to give fosfomycin a try soon.

 

Posted
On 4/28/2023 at 6:51 PM, voyagerUSA said:

I'm aware of the non bacterial prostatitis. However every time I get symptoms my urine shows white blood cells, they prescribe me antibiotic and in one week the symptoms go away completely. Then in a few months the exact same symptoms come back...

  I  had  s similar problem they kept  keep prescribing  me  antibiotics   until I  became resistant to most antibiotics...then more expense  having to carry out umpteen blood/ urine tests

Posted
5 hours ago, matchar said:

I had the opposite experience with doctor Umaphorn about 5 years ago. She was unfriendly, didn't even give me a physical examination and said I couldn't possibly have prostatitis because I didn't have any pain in my prostate, I only had pain in my urethra.

 

I think she told me to see a neurologist, prescribed gabapentin and I never saw her again. Since then I've seen many urologists and they all agree it's chronic prostatitis but it hasn't responded to any antibiotic treatment. I'll have to give fosfomycin a try soon.

 

This is interesting because my symptoms are also 100% in urethra, I have no pain in prostate or anywhere else. Perhaps the difference is I also get high white blood cells in my urine whenever I get a flare up which made her think is more likely an infection. I deliberately did not try to influence her diagnosis, just described my symptoms and showed my labs, and she was the one to bring in possibility of prostate infection, among other possible explanations, including cancer (not the best bedside manner, I know...)

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Posted
12 hours ago, voyagerUSA said:

Just some feedback for those interested in this issue I saw both Dr Suntchai at BNH and Dr Umaphorn at Bumrungrad (she is also at Sukhumvit Hospital I think) for consultation. They both seemed fairly knowledgeable about prostatitis/urethritis issues and understand the nuances of this difficult to diagnose and treat problem. They are both easy to talk to, explain their thinking well, and patient about listening to my lengthy disease history, especially Dr Suntchai. However their recommendations on further testing and treatment were different. One suggested MRI of the prostate the other cytoscopy for example, and their thinking on antibiotics was not the same either. Dr Umaphorn seems a bit more up to date, she knew very well about fosphomycin and suggested it as the next thing to try should my current treatment fail. Dr Suntchai seems a bit more "old school" but he seems very open and willing to discuss and research alternative treatments if you point him in the right direction. For anyone who has this sort of problem either of these doctors are probably among the best that we can do here in Thailand. Please note I have not actually started treatment with either of these doctors yet, these are my impressions from a single consultation.

Thank you for sharing in great detail! Appreciated Sir. 

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