Hi,
thanks for responding so promptly. I´m 45 years old. I´m desesperate and I don´t know, if the best way is removing my prostate gland. I bet that sexual satisfaction without pain after, will be impossible for the rest of my life. My next step. I have no idea.
I have a question regarding the "Inclusion Criteria" for the LRP study. Why does the age have to be 30 years or greater? I know plenty of other sufferers on their mid-late 20s who may consider the treatment as an option.
I’m 36 years old and I’m from Romania.
Approximate of one year I suffer from chronic prostatitis/pain pelvic syndrome.
Symptoms are:
Pain in all of pelvic area (pubis, penis, testicles, perianal, anus), burn on my urethra, especially after urination.
Urinary disorders: frequent urination, with small quantities of urine, nicturia, sometimes cloudy urine or with bad smell.
Sexual disorders: loss of libido, Erectile dysfunction and abnormal penile sensitivity, performance anxiety.
Treatments were with antibiotics, alpha blockers, pain medications, natural treatment, all with no substantial improvements. Last ultrasound showed calcifications in the prostate.
My name is George i am 25 years old from Bulgaria.
Many years before doctors discovered me glumeronefritis
After several years I began a hemodialysis.
In 2008 i had a successful kidney transplantation.
Several months after transplantation had
complaints expressed in this: difficult urination,
pain on urination, urinary retention in the bladder,
discomfort in the area of gender RA.
From tests of sperm they find chronic bacterial prostatitis
due to E.Coli.I started to take antibiotics.
but without any effect.I think for surgery,maybe that is only option to cured this simptoms and this disease.I'm desperate from this pain and my condition is not good.
I mainly use Benadryl for Interstitial Cystitis and get some sleep, I have not been on Benadryl vary long but I can't tell the difference yet ,you think should get off of it ?
Hello Dr. Krongrad,
I'm 41 and I've had it for 2.5 years now. I've been following you trial since Dec 2008 reading everything silently until couple of weeks ago, when I was not able to access any posts without registration anymore - so had to register.
Symptoms:
Pain - only on the right side. Perineum, right side of the penis, right side of the tip of the penis, right testicle, right side of rectum, right side of lower abdomen, right side of lower back, radiating - you guessed it - right leg! Burning on urination - sometimes, discomfort during sexual climax. I don't really pee that often, but almost always feel like I need to go. I experience difficulty passing urine and stream is weak. I had mostly urinary symptoms in the beginning, but now always discomfort in perineum and pain most of the time.
Treatments:
Levaquin 500 mg 6 weeks, 750 mg 2 weeks
Bactrim 6 weeks
Doxycycline 4 month
Flagyl 4 weeks
Prostate massage - 3 times a week for 3 month simultaneously with antibiotics
Flomax
Sanctura
Detrol
Vesicare
ProstaQ
Lyrica 25mg x 3 times a day, 50mg x 3 times a day, 150 mg x 3 times a day
Don't take any of this anymore.
Ultrasound of scrotum - epididymal cyst
Ultrasound of prostate - calcificaions, small nodule on the right
PSA 0.5
CT abdomen & pelvis w/contrast - nothing
Cystoscopy - nothing
Saw couple of urologists + 2 professors of surgery, one of them "internationally recognized expert on prostatitis". Asked him about your trial - he called you crazy. "Don't go to Miami" - hi said - "You'll wake up with the same symptoms, impotent and leaking urine." At the same time he mentioned a patient of his who had prostatitis and was diagnosed with prostate cancer. Had prostatectomy after which all prostatitis symptoms disappeared. Another professor offered "INTERSTIM" therapy for urinary control www.interstim.comI asked if he thinks it's gonna help and he said: "I don't think so, but I can do it anyway because I've been doing it for 8 years." I respectfully declined.
"Asked him about your trial - he called you crazy. "Don't go to Miami" - hi said - "You'll wake up with the same symptoms, impotent and leaking urine." At the same time he mentioned a patient of his who had prostatitis and was diagnosed with prostate cancer. Had prostatectomy after which all prostatitis symptoms disappeared."
I would refuse treatment off any Dr who contradicted himself so obviously as this. He see's that one of his own patients is cured from prostatitis symptoms, yet still says you will still have the symptoms-PRICELESS LOL....!!!!
What do we know and what do we not know about helping men get rid of their symptoms. Does the expert quoted have a solution for men with severe, treatment-resistant chronic prostatitis other than LRP? If so, can we see the data?
The corollary is this: Is LRP effective in helping men get rid of the symptoms of severe, treatment-resistant chronic prostatitis? Fair question. So how do we answer it?
The first step was the case of the LRP done for David Radford. That LRP provided complete, immediate, and durable relief with no side effects. You can see an interview with David 2.5 years after his LRP on this site and on the Prostatitis Surgery site. David's case caused us to wonder if his was the unusual or the unusual case?
The second step was the initiation of a prospective clinical trial to quantify the symptom response in men with severe, treatment-resistant chronic prostatitis? That trial is ongoing. It will not be the last word on the subject but it is a better word than a single case with a great narrative.
Until the trial is done and reproduced and expanded, we will have only case reports -- with all their attendant limitations -- upon which to base any decisions. Because the idea of LRP is new and because the argument for it is based upon symptoms as reported by patients, not by doctors,we have made every effort to let the patients publicly and directly speak for themselves: This social network and the recorded videos. Perhaps the expert quoted would join us here and interact with David, Ike, Rich, Robert, Christof, and Dr. Muff and see for himself.
I'd be interested in hearing from patients who have had effective treatment with approaches other than LRP for their severe, treatment-resistant chronic prostatitis. Are they available?
Silent Reader, you and I have seen the same doctor. Funny, he basically said the same things to me about the prospects of prostate surgery. Lyrica and Prosta-Q did nothing for me either......
Overall, IMO, a good doctor, just does not agree with the surgery part of things, yet this seems to be showing the best results so far.
None of this is personal. Since the purpose of this forum is to elevate knowledge, the emphasis is on data, from the simplest comment ("Lyrica and Prosta-Q did nothing for me") to the sort of randomized trial as shown here. As to various proposed treatments: Where are the data? With surgery, we have at this stage the video reports of three men who had it. They are men with some of the most severe forms of chronic, treatment-resistant prostatitis. We also have a few more text reports, including a few in this forum. Case reports are incomplete knowledge. For this reason, there is an ongoing clinical trial, to elevate the knowledge to a more firm standing, looking at some of the worst cases of chronic, treatment-resistant prostatitis. The trial results are not yet available. So how can anybody dismiss surgery when these patients' lives are essentially ruined by their illness, when there are no data to show that surgery makes them worse, and when available cases show the results shown in the reports cited above? Nobody should suggest surgery for all patients. Nobody should be doing surgery outside clinical trials reviewed by IRBs and designed to advance our knowledge. And nobody should be doing surgery for other than some of the worst cases of the disease: Severe, treatment-resistant chronic prostatitis. Applying this logic to other proposed treatments for men with severe, treatment-resistant chronic prostatitis: Where are the data? What do we do for men who fail?
Guess 'resume' was a bad idea, sorry.
I guess the point I was trying to make is that it shows where the things with prostatitis stand: Here is a good Doc with great reviews, 30+ years of experience, sitting on every possible and impossible 'prostatitis' board and committee, directing tens of 'prostatitis' trials, having his name under hundreds of 'prostatitis' publications. What's he got up his sleeve? Lyrica and Prosta-Q. And Detrol. And it's not because he is mean or not willing to help. He just does not know any better. Same as everyone else in medical and patient community.
So I am for the surgery trial! I wish it had been already completed. I wish it had 10000 patients and 99% success rate. I wish prostatectomy for CPPS was FDA approved and my insurance did not mind paying for it. I wish... I did not have prostatitis in the first place. Meanwhile I come here often hoping to find another report, good or bad. And when I do, I read it... more then once... So I admire people who make their experience available to the rest of us and who are not so quick to call ideas 'crazy', but take their time to explore them instead.
No harm done. But given that one of our objectives is to draw patients and doctors out of their respective and often fragmented corners, it just seemed useful to take down what might be perceived as a "red flag." If someone thinks a treatment is crazy, he's invited to join us and make his case.
I've heard from colleagues that LRP is crazy but they don't have data to support this and they have not joined us here to review relevant options and data.
Incidentally, the day Radford was referred to me by a colleague I thought the idea was crazy. The trouble was that Radford the man didn't seem crazy and the LRP worked completely, immediately, and durably (he's now 3 years out and absolutely pain free, reporting great erections, great urination, happy a pig in ... um ... a corn field). So the beauty of observation is that it can cause us to change our opinions. Sometimes the earth is really not flat, you know.
Yes, he does seem like a good guy. His problem, like that of all doctors, is that the state of the art simply does not permit a scientific basis for effective action. It is an argument for greater knowledge, which means research: The hard-won acquisition of data. Your post makes a superb case for research.
Nothing I know has a 99% success rate: Not antibiotics, not chemotherapy, not radiation, and not surgery. But moving higher than the current 0% now available to men with severe, treatment-resistant, chronic prostatitis, even 90% would seem like a huge step up.
PS: The FDA is not relevant here in that there are no new drugs or devices being tested. And as for insurance companies, they always mind paying. Which introduces an interesting point: Pay for a remedy that works or pay for 20 years of consultations, tests, and medications. It's an argument I once effectively made on behalf of a patient.Yes, there actually is an economic argument to health.
Thanks for greeting me. To be honest I am not quite fine -- that's why I was looking around for information about prostatitis and stumbled across your site. Now I've filled out my profile, any comments for me?
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The Prostatitis social network is intended for informational and educational purposes only. It is not engaged in rendering medical advice or professional services.
Any person who appears to knowingly solicit and/or render medical advice or promote a professional or commercial service on this site may be removed by the administrators without notice.
Information provided on this site should not be used for diagnosing or treating acute or chronic prostatitis or any other health problem or disease.
The Prostatitis social network is not a substitute for professional care. If you have or suspect you may have a health problem, please consult your health care provider.
Prostatitis Forum & Social Network
Acute and chronic prostatitis discussion. Arnon Krongrad, MD, moderator.
Arnon Krongrad, MD's Comments
Comment Wall (111 comments)
thanks for responding so promptly. I´m 45 years old. I´m desesperate and I don´t know, if the best way is removing my prostate gland. I bet that sexual satisfaction without pain after, will be impossible for the rest of my life. My next step. I have no idea.
Thank for helping. Juan
Thanks
Approximate of one year I suffer from chronic prostatitis/pain pelvic syndrome.
Symptoms are:
Pain in all of pelvic area (pubis, penis, testicles, perianal, anus), burn on my urethra, especially after urination.
Urinary disorders: frequent urination, with small quantities of urine, nicturia, sometimes cloudy urine or with bad smell.
Sexual disorders: loss of libido, Erectile dysfunction and abnormal penile sensitivity, performance anxiety.
Treatments were with antibiotics, alpha blockers, pain medications, natural treatment, all with no substantial improvements. Last ultrasound showed calcifications in the prostate.
Many years before doctors discovered me glumeronefritis
After several years I began a hemodialysis.
In 2008 i had a successful kidney transplantation.
Several months after transplantation had
complaints expressed in this: difficult urination,
pain on urination, urinary retention in the bladder,
discomfort in the area of gender RA.
From tests of sperm they find chronic bacterial prostatitis
due to E.Coli.I started to take antibiotics.
but without any effect.I think for surgery,maybe that is only option to cured this simptoms and this disease.I'm desperate from this pain and my condition is not good.
4 pills.
only had a urine culture don't and it was negative.
The worst symptom would the urge to urinate straight after urinating.
I'm 41 and I've had it for 2.5 years now. I've been following you trial since Dec 2008 reading everything silently until couple of weeks ago, when I was not able to access any posts without registration anymore - so had to register.
Symptoms:
Pain - only on the right side. Perineum, right side of the penis, right side of the tip of the penis, right testicle, right side of rectum, right side of lower abdomen, right side of lower back, radiating - you guessed it - right leg! Burning on urination - sometimes, discomfort during sexual climax. I don't really pee that often, but almost always feel like I need to go. I experience difficulty passing urine and stream is weak. I had mostly urinary symptoms in the beginning, but now always discomfort in perineum and pain most of the time.
Treatments:
Levaquin 500 mg 6 weeks, 750 mg 2 weeks
Bactrim 6 weeks
Doxycycline 4 month
Flagyl 4 weeks
Prostate massage - 3 times a week for 3 month simultaneously with antibiotics
Flomax
Sanctura
Detrol
Vesicare
ProstaQ
Lyrica 25mg x 3 times a day, 50mg x 3 times a day, 150 mg x 3 times a day
Don't take any of this anymore.
Ultrasound of scrotum - epididymal cyst
Ultrasound of prostate - calcificaions, small nodule on the right
PSA 0.5
CT abdomen & pelvis w/contrast - nothing
Cystoscopy - nothing
Saw couple of urologists + 2 professors of surgery, one of them "internationally recognized expert on prostatitis". Asked him about your trial - he called you crazy. "Don't go to Miami" - hi said - "You'll wake up with the same symptoms, impotent and leaking urine." At the same time he mentioned a patient of his who had prostatitis and was diagnosed with prostate cancer. Had prostatectomy after which all prostatitis symptoms disappeared. Another professor offered "INTERSTIM" therapy for urinary control www.interstim.comI asked if he thinks it's gonna help and he said: "I don't think so, but I can do it anyway because I've been doing it for 8 years." I respectfully declined.
I appreciate what you are doing.
I would refuse treatment off any Dr who contradicted himself so obviously as this. He see's that one of his own patients is cured from prostatitis symptoms, yet still says you will still have the symptoms-PRICELESS LOL....!!!!
The corollary is this: Is LRP effective in helping men get rid of the symptoms of severe, treatment-resistant chronic prostatitis? Fair question. So how do we answer it?
The first step was the case of the LRP done for David Radford. That LRP provided complete, immediate, and durable relief with no side effects. You can see an interview with David 2.5 years after his LRP on this site and on the Prostatitis Surgery site. David's case caused us to wonder if his was the unusual or the unusual case?
The second step was the initiation of a prospective clinical trial to quantify the symptom response in men with severe, treatment-resistant chronic prostatitis? That trial is ongoing. It will not be the last word on the subject but it is a better word than a single case with a great narrative.
Until the trial is done and reproduced and expanded, we will have only case reports -- with all their attendant limitations -- upon which to base any decisions. Because the idea of LRP is new and because the argument for it is based upon symptoms as reported by patients, not by doctors,we have made every effort to let the patients publicly and directly speak for themselves: This social network and the recorded videos. Perhaps the expert quoted would join us here and interact with David, Ike, Rich, Robert, Christof, and Dr. Muff and see for himself.
I'd be interested in hearing from patients who have had effective treatment with approaches other than LRP for their severe, treatment-resistant chronic prostatitis. Are they available?
Radical prostatectomy for chronic prostatitis: BJU International, 91 (3cr), 300, 2003.
I would be very interested to know more about that.
Overall, IMO, a good doctor, just does not agree with the surgery part of things, yet this seems to be showing the best results so far.
data, from the simplest comment ("Lyrica and Prosta-Q did nothing for me") to the sort of randomized trial as
shown here. As to various proposed treatments: Where are the data? With surgery, we have at this stage the video reports of three men who had it. They are men with some of the
most severe forms of chronic, treatment-resistant prostatitis. We also have a few more text reports, including a few in this forum. Case reports are incomplete knowledge. For this reason, there is an ongoing clinical trial, to elevate the knowledge to a more firm standing, looking at some of the worst cases of chronic, treatment-resistant prostatitis. The trial results are not yet available. So how can anybody dismiss surgery when these patients' lives are essentially ruined by their illness, when there are no data to show that surgery makes them worse, and when available cases show the results shown in the reports cited above? Nobody should suggest surgery for all patients. Nobody should be doing surgery outside clinical trials reviewed by IRBs and designed to advance our knowledge. And nobody should be doing surgery for other than some of the worst cases of the disease: Severe, treatment-resistant chronic prostatitis. Applying this logic to other proposed treatments for men with severe, treatment-resistant chronic prostatitis: Where are the data? What do we do for men who fail?
I guess the point I was trying to make is that it shows where the things with prostatitis stand: Here is a good Doc with great reviews, 30+ years of experience, sitting on every possible and impossible 'prostatitis' board and committee, directing tens of 'prostatitis' trials, having his name under hundreds of 'prostatitis' publications. What's he got up his sleeve? Lyrica and Prosta-Q. And Detrol. And it's not because he is mean or not willing to help. He just does not know any better. Same as everyone else in medical and patient community.
So I am for the surgery trial! I wish it had been already completed. I wish it had 10000 patients and 99% success rate. I wish prostatectomy for CPPS was FDA approved and my insurance did not mind paying for it. I wish... I did not have prostatitis in the first place. Meanwhile I come here often hoping to find another report, good or bad. And when I do, I read it... more then once... So I admire people who make their experience available to the rest of us and who are not so quick to call ideas 'crazy', but take their time to explore them instead.
I've heard from colleagues that LRP is crazy but they don't have data to support this and they have not joined us here to review relevant options and data.
Incidentally, the day Radford was referred to me by a colleague I thought the idea was crazy. The trouble was that Radford the man didn't seem crazy and the LRP worked completely, immediately, and durably (he's now 3 years out and absolutely pain free, reporting great erections, great urination, happy a pig in ... um ... a corn field). So the beauty of observation is that it can cause us to change our opinions. Sometimes the earth is really not flat, you know.
Yes, he does seem like a good guy. His problem, like that of all doctors, is that the state of the art simply does not permit a scientific basis for effective action. It is an argument for greater knowledge, which means research: The hard-won acquisition of data. Your post makes a superb case for research.
Nothing I know has a 99% success rate: Not antibiotics, not chemotherapy, not radiation, and not surgery. But moving higher than the current 0% now available to men with severe, treatment-resistant, chronic prostatitis, even 90% would seem like a huge step up.
PS: The FDA is not relevant here in that there are no new drugs or devices being tested. And as for insurance companies, they always mind paying. Which introduces an interesting point: Pay for a remedy that works or pay for 20 years of consultations, tests, and medications. It's an argument I once effectively made on behalf of a patient.Yes, there actually is an economic argument to health.
With time I will delve into this site more.
Hope you are well and a spammer I am not!
Thanks for greeting me. To be honest I am not quite fine -- that's why I was looking around for information about prostatitis and stumbled across your site. Now I've filled out my profile, any comments for me?
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The Prostatitis social network is intended for informational and educational purposes only. It is not engaged in rendering medical advice or professional services.
Any person who appears to knowingly solicit and/or render medical advice or promote a professional or commercial service on this site may be removed by the administrators without notice.
Information provided on this site should not be used for diagnosing or treating acute or chronic prostatitis or any other health problem or disease.
The Prostatitis social network is not a substitute for professional care. If you have or suspect you may have a health problem, please consult your health care provider.
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