NIH-Sponsored Chronic Prostatitis Collaborative Research Network
Back to our report on the November 1998 NIH-Sponsored Chronic Prostatitis Treatment Workshop
Symptoms of prostatitis
Causes of prostatitis
Methods of treatment
and forms of prostatitis

The role of prostate "drainage."
Clinics specializing in prostatitis
Pointers to other medical and urologic sites
Archives of patient and doctor comments
Definition of prostatitis

Alphabetic list of files with descriptions
Welcome for doctors
About The Prostatitis Foundation
Washington DC, Nov. 5-6, 1998

International Prostatitis Collaborative Network

Workshop on Chronic Prostatitis Treatment Strategies


For information about how this article was produced , click on the link.
Links on people's names take you to the webpage listing meeting participants. If no E-mail address is listed there, either the participant did not provide an E-mail address or requested it not be included here.
This meeting was called only about three weeks before it occured. Experts on prostatitis from USA, Canada, UK, Germany, The Philippines and Russia attended.
The most striking things about the meeting:
  • There were almost as many theories about the causes and cures of prostatitis as there were attendees;
  • Everyone seemed to agree that their own theories were not scientifically proven;
  • Participants agreed that chronic prostatitis is very debilitating and solutions must be found;
  • Many participants gave brief presentations on their own work and theories. These are covered in a separate article. Most of these treatments will be examined in treatment trials slated to begin in 1999. Further surveys of participants, other experts and patients by Dr. Nickel will be used to prioritize treatments to be tested.
  • NIH, under the leadership of Dr. Nyberg, has made a very strong effort to assure patient input. Prostatitis Foundation representatives and other patients attending the meeting were given full opportunity to voice their opinions and ideas.
  • The main purpose of the NIH cohort study over the next year is to establish some baseline data so that fair comparisons can be made when treatment trials begin. There has never been a national set of prostatitis patients that have been examined using the exact same set of tests.
  • Patient pressure on Congress to continue and expand funding for this research will be critical.
  • Pharmaceutical industry representatives attended the meeting. Industry research can go a long way to begin to address problems in diagnosis and treatment of prostatitis, but will not occur until baseline data are established and FDA's definition of prostatitis is improved. The participants at the meeting resolved to inform FDA about their improved definition of the disease.

Expanded meeting notes:

The session was opened by Dr. Leroy Nyberg:"I'd like to give you the overall reason why we're here. This is a very hastily developed meeting, some people are not able to be here, but we hope to do better next year. NIH is starting today or tomorrow our enrolling patients in a database for patients with chronic prostatitis. At an appropriate time, investigators, a year from now, will start treating patients with chronic prostatitis.

"Our purpose here today is to find out what we can agree on. We all have to be on the same base line -- I don't think there is an expert here on prostatitis. There is not one person who is a real expert. Everybody has their expertise, we all bring something to the table, and I hope we will develop a collaborative expertise. We know very little, some have experience, but nothing is scientific proven.

"But we're NIH, we have to have science to believe in something. We need to find out really what causes prostatitis, find what works in treating it, and to do that we're going to start be deciding how do we subcategorize patients. We hope to come away with some ideas, including ideas about what treatments you are using, and who are the patients you enroll. We'll tell you what we're doing at NIH in our own studies, which is to develop a collaborative network to treat patients. We will get together again here next year to talk about that."

Mike Hennenfent:, President of The Prostatitis Foundation: , spoke next:"This is the culmination of an effort that's been underway for many years. When we arrived more than 3 years ago, many of you had recognized the gravity. When we formed the Internet newsgroup -- we were overwhelmed from the response. What we found out is that after flare-ups and remissions and antibiotics and traveling from doctor to doctor, there is still a lot to learn about prostatitis. The need for research became obvious right away.

"Researchers told us they know it is a problem, but there weren't funds to do something about it. Funds were being used for prostate cancer research. It became obvious prostatitis needed its own prostatitis advocacy group. Our purpose is to educate the public and the government.

"We haven't promoted an empire here, like we might have. The webpage has been instrumental to our efforts, and we get many compliments on our informational packets. Everybody at The Prostatitis Foundation is an unpaid volunteer, and we generally pay our own travel expenses. Informational requests just keep coming, from all over the world. We operate on a shoestring budget. So far, we haven't spent a lot of effort on fund raising and having a group in every town.

"We hear from a lot of spouses and mothers. Dr. Shoskes, who is not here today, told us 'I'd like to get a patient whose history I could take in less than an hour.' We often get asked, is there a connection to cancer. We don't have that answer. Also get that [connection question] about prostatitis and IC. We don't endorse a particular doctor or protocol. "

Curtis Nickel:"Around the world, every urologist is an expert on prostatitis. But they can't agree. In urology, prostatitis is really the black sheep, we stick it in a closet and try to forget it's there. We're a bit ashamed of how we diagnose and treat our prostatitis patients.

"As far as research money spent-- we're way down there. But will take its rightful position. In Bethesda, 3 years ago, we found out we didn't know too much about prostatitis. We weren't sure the 4-glass Meares -Stamey test was working. We didn't know that WBC meant. Didn't know how many patients there were and the impact on society. We came out with a proposed classification of prostatitis, and we're going to go through that at this meeting to see if it stood the test of time.

"What have we accomplished? In terms of epidemiology -- we know prostatitis causes one to two million doctor visits in US per year, and 8 per cent of urology visits. That's probably a low count. We know that 5 o 8 per cent of men, at least, are at risk. We know that most urologists see 150 to 200 prostatitis patients per year. We find out that the quality of life of the chronic prostatitis patient isn't like BPH, it's worse, like acute MI [heart attack] or Krohns Disease, it's an important disease epidemiologically.

"In the NIH cohort study, the basic science, immunology, and molecular biology of prostatitis is being addressed. In the next year, we have to decide what treatments warrant further investigation. We need to look at it from an international perspective, and develop an inventory of prostatitis treatments. At this meeting, we're going to prioritize those treatments, and look at which should be investigated by industry and which by governments. We should look at practice treatments that are still experimental. Some treatments may have justification. We need to look at which ones we should explore. I'd like to see some form of loose consensus, prioritized, on which should be further investigated, which show promise.

"Next year won't have a small group, next year our prostatitis meeting will be more of a routine [medical] meeting."

Dr. Nyberg: :"We're planning on holding that meeting on the first Thursday and Friday in November, 1999."

Curtis Nickel:"There will be a book coming out, 43 chapters on Prostatitis, coming out in new year in time for AUA (June 1999). Libraries should have it.
"Textbook of Prostatitis."
Published by Isis Medical Media
Edited by J. Curtis Nickel.
Isis MML
59 St. Aldates
Oxford OX1 Ist
England, UK
tel +44 1865 202939
FAX +44 1865 202940

[describing his own clinic's methods]"We know, we must know about the leukocyte and culture status. If we have a positive culture of a prostate pathogen, if have leukocytes, have Chronic Prostatitis II, minimum 6 weeks flouroquinolone, or Sulfa, continue antibiotics, perhaps longer than another 6 weeks.

"If we have no improvement, we do TRUS, looking for stones, I do add prostate massage and antibiotics. We can cure 40 per cent with antibiotics alone. Many of them relapse, because the same pathological process repeats. Then w use suppressive antibiotics. But also get recurrence, disease returns, because have the same anatomical or physiological process that got them prostatitis in the first place. If still don't get better, then we consider surgery (total prostatectomy).

Dr. Schaeffer:"In my experience, very few [patients have] bacteria, most of those that do are asymptomatic, unless they have a bladder infection."

Dr. Krieger:"We've found that if we study men when they are asymptomatic, we can often find bacteria."

Dr. Nickel:"In our experience, of men with symptoms, 5 per cent do present with bacteria, and some of them do become asymptomatic with treatment.

Dr.Weidner :"At Geissen [Germany] we do find bacteria in many cases."

Dr. Feliciano :"If you use low dose antibiotics for suppression, doesn't that lead to mutations, resistance?

Dr. Nickel:"Nobody really knows, in the prostate.

Nickel:[continues describing his work]"If leukocyte [WBC] counts are positive, culture negative, my biopsies show in these patients there are aggregates of bacteria, and they have inflammatory prostatitis which has the same response to floxcin.

"If they still don't improve, if they have a big boggy prostate, we do prostate massage. If no improvement, look for obstructive flow, and we try alpha blockade [cadura or hytrin or flomax], if still no improvement, finesteride, phytotherapy [vitamins and herbs]. We've had no success with quercetin. Use TUMT when everything else fails. However, with prostatodynia, TUMT makes matters worse. We use low heat, with higher heat, patients don't get as good an improvement.

"I hardly ever see a patient where initial things [antibiotics and herbal medications and in many cases alpha blockers] haven't already been done. The patients that got better, they've been selected out, I don't see them because they've gotten better. Many times I see them after they fail the alpha blocker."

Dr. Potts:"Perhaps urodynamics [bladder flow studies] ought to be done right off the bat."

Dr. Nickel:"...Or perhaps you need to have a higher cutoff point for doing those kinds of things. We just don't know.

"In recalcitrant patients, we use analgesics, muscle relaxants, alpha blocker, so they can work If that doesn't work, we will use biofeedback, we have a pressure transducer we use to teach pelvic floor relaxation."

Dr. Kaplan:
 "I'm impressed by how lack of evidence this all is."

Dr. Nickel:[referring to his anticipation of the remainder of the meeting:] "It's going to get worse."

[Somewhat later -- Not in response to Dr. Kaplan] "You'll find that many of us believe that some kind of cryptic organism is responsible for the inflammation in prostatitis. [this after comparison to the case of the helicobacter pylori.]"

[even later, in another context]"In a six month follow up on Dr. Feliciano's North American patients we had found all 17 were very good, but following up after 2 years, we find that some are now having problems again." [This comment was in the context of how long you have to follow up prostatitis patients to know if you have "cured" them. In most research published to date, follow ups were on the order of one month.]

[Previous quotes preceded the main portion of the meeting. The following quotes follow the main portion of the meeting:]

Dr. Burbank:
 "Are you (NIH researchers) doing any imaging , developing some baseline imaging on these patients? Not to have a baseline imaging study --mri's and ultrasounds -- would be too bad."

Dr. Schaeffer:
 "I'd like [to see] some baseline data that support the usefulness of MRI."

Dr. McNaughton -Collins:"I'd like to try to get the primary care physicians up to speed. Usually prostatitis patients are simply treated with antibiotics, maybe the patients can let us know what they experience.

"We did a study based on the National Ambulatory Medical Care surveys. We found that primary care physicians are an important part of the prostatitis picture. We found that among prostatitis patients, 46 per cent see their primary physician, compared to 47 per cent who go to urologists.

"We asked 504 urologists about what they do. We found that as regards the Meares Stamey 4-jar test, 47 per cent never use it, 33 per cent use it half the time, but most use it less than half the time.

"We also found that the more frequently urologist were doing the four glass test, the less they were doing antibiotics."

Dr. Krieger:"The FDA definition of prostatitis is one thing we might consider . We could tell FDA to broaden their definition so that a company could have an economic advantage to prove a product or procedure works for this disease, such as pharmaceuticals . We should ask Dr. Nyberg to get in touch with FDA to tell them to re-think their definition. "

Dr. Nyberg :"We can tell them what the definition is."

Dr. Nickel:"I don't expect consensus."

Dr. McNaughton -Collins :"The leaders of the urology community need to learn that prostatitis is something to deal with."

Dr. Nickel:"It might be better to get the urologic community on our side, but also have to go wider. For treatment of prostatitis, we can't wait for exact etiology, before beginning treatment trials."

[Nickel will be writing to program participants for responses on research priorities.]

Dr. Nyberg :"This is the start of a whole new attack on prostatitis that I hope will benefit the patients. "

This information is forwarded to you by the Prostatitis Foundation. We do not provide medical advice. We distribute literature and information relevant to prostatitis. While we encourage all research we do not endorse any doctor, medicine or treatment protocol. Consult with your own physician.
© 2002 The Prostatitis Foundation
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