Cured of Prostatitis

[twerges]

Perhaps some of you remember me. I was a regular poster to this newsgroup several years back. I haven't posted here in a long time, because I no longer suffer from prostatitis at all. Yes, you read that correctly, I have recovered completely from chronic prostatitis. I wanted to make a point of occasionally posting my story to this newsgroup in the hope that others might benefit.

Let me start with a little history. I had prostatitis that was severe and chronic. I had constant pain in the pelvic region that would sometimes extend throughout my abdomen and up to my shoulders. I had pain during urination, pain during defacation, and pain after ejaculation. My urinations were never more than a dribble. All of this continued for more than a year, during which my symptoms got worse, not better.

I tried a variety of treatments without success. I tried antibiotics, I tried the "Krisiloff diet", I tried painkillers. Like most of you, nothing helped me. I was beginning to assume that I would have to live that way for the rest of my life, a prospect I found intolerable.

Eventually I decided to try treatments for muscle dysfunciton. I did several different treatments. I had biofeedback to eliminate the habit of "bracing" the pelvic musculature; I had physical therapy to correct the involuntary muscle spasms; and I stopped sitting all the time (I'm a computer programmer). After the muscle therapy, my prostatitis immediately and dramatically improved. Within 4 weeks, my life went from being "hell" to "tolerable." After that, my prostatitis continued to improve, albeit very gradually, until it disappeared completely after 14 months.

My "prostatitis" was caused by muscle damage that was injuring the nerves in the pelvic region, causing neuropathic pain and neurogenic inflammation ("swollen prostate"). I believe that "prostatitis" is not localized to the prostate. I believe that the swollen prostate is an effect of the disease, not the cause. I believe that "prostatitis" has nothing to do with "invisible super-bacteria," a theory which by now is totally discredited.

I've read the research surrounding the neuromuscular theory, and I feel that it is by far the best supported theory of prostatitis causation. I suspect that it is the cause of prostatitis in a great many sufferers.

I cannot recommend too highly, that everyone diagnosed with "prostatitis" immediately investigate the "Stanford/Wise-Anderson Protocol" or something similar, and have themselves examined by a trained physician for pelvic muscle dysfunction. Please note that I personally have never been to the Stanford clinic (I had similar treatment elsewhere), and I'm not receiving money from them or anyone else.

I wish you all the very best of luck.

Tom W

p.s. I'm not a physician and nothing I say should be construed as medical advice.

[alprost]

Hi Tom, Thanks for posting this. I've been getting myofascial release for the past 5 months for chronic prostatitis / chronic pelvic pain syndrome after my case of prostatitis was cleared up by a course of Abx. Although I have improved by around 80%, my treatment has again hit a bit of a plateau, so it is reassuring to hear that your improvement was very gradual over 14 months, and that you have evantually made a complete recovery.

Thanks for taking the time to come back and give hope and advice to others - I for one really appreciate it.

[Richard.N]

Great to see feedback like that - thanks Twerges. I wonder how many other people who beat this thing don't check in after it is cured or when becomes bearable?

[Bill in NH]

Hi Tom. Thanks a million for your post!

I developed chronic prostatitis / chronic pelvic pain syndrome in Jan 2003 and have since improved greatly. However, it still does significantly decrease the quality of my life and I frequently get very discouraged about the possibility of having chronic prostatitis / chronic pelvic pain syndrome forever.

I also appreciated your previous posts about the ratio of incidence and prevalence and it's implication on duration of disease. Your reasoning is completely correct - if in fact the incidence is as high as reported and the prevalence doesn't increase with age, then the disease should be self-limted in the vast majority of cases.

BTW, I recently read David Wise's book, have been doing the exercises in his book, and, immediately before I read your post, sent him an e-mail about trying his program!

[faceinthecrowd]

Great to hear you've recovered, Twerges. You mentioned that your case was caused by pelvic muscle dyfunction. I think that may be a major component in my CP as well. Before I came down with my case, I worked in front of a computer all day. I'm thinking maybe that squuezed and iritated my pelvic muscles. I wonder what percentage of men with CP can document some kind stress to the pelvic muscles.

[TK]

Twerges,

Glad that you have found the road to recovery.

Would it be possible (With permission, of course) to post the names of your physical therapists and/or any physicians that you found who are knowledgeable in treating pelvic floor muscles?

Thanks for the great news!

[twerges]

Would it be possible (With permission, of course) to post the names of your physical therapists and/or any physicians that you found who are knowledgeable in treating pelvic floor muscles?

TK,

I'd rather not post anything recommending a particular clinician, since I've posted to the internet newsgroup, and speculation is already rife that I'm a lackey for some clinic and being paid to say these things. If I don't recommend anyone specific I cannot be misconstrued as having a personal interest. Additionally, I've seen only a very small number of clinicians and am not competent to judge their level of expertise.

Also, I'd rather not spell out details of what I think would be an ideal PT program, since I don't wish to be misconstrued as an amateur physician offering medical advice over the web.

All I can do is relate a personal experience and point people in a general direction. Sorry I couldn't be of more help, or answer your questions in a more concrete way.

tom

[jn517]

Tom:

How did you manage your career as a computer programmer if you stopped sitting? (I too work in the same field and have had to scale back to less than part-time.)

[TK]

I'd rather not post anything recommending a particular clinician, since I've posted to the internet newsgroup, and speculation is already rife that I'm a lackey for some clinic and being paid to say these things. If I don't recommend anyone specific I cannot be misconstrued as having a personal interest. Additionally, I've seen only a very small number of clinicians and am not competent to judge their level of expertise.

Understood and respected. We all face this dilemma.

If you have looked into the muscle spasm section of the forum, you may have seen discussion about the fact that a broad approach to muscle tension disorder seems to help many, but treatment remains unavailaable because people do not know where to go to find practitioners who are aware of the problem.

Beyond posting our positive experiences here, are there any further ethical steps we can take to make this treatment more widely available.?

[twerges]

Understood and respected. We all face this dilemma.

If you have looked into the muscle spasm section of the forum, you may have seen discussion about the fact that a broad approach to muscle tension disorder seems to help many, but treatment remains unavailaable because people do not know where to go to find practitioners who are aware of the problem.

Beyond posting our positive experiences here, are there any further ethical steps we can take to make this treatment more widely available.?

It's very regrettable that people can't find practitioners. I'm not sure what to do about that. A directory might be helpful, where practitioners could put their locations, email addresses, and credentials. A prominent disclaimer of non-endorsement could be put at the top of the directory. Perhaps we could contact the guy that runs ucpps.men about this, although he's probably already really busy.

Other than that, I suppose all that can be done is wait until the treatment is more accepted and practitioners are more easily found. It would be ideal if, some day, urologists could do a pelvic muscule examination upon diagnosis of prostatitis, then refer the patient to a PT.

tom

[webslave]

I run chronciprostatitis.com.

I would be happy to put up a page with practitioners. I thought someone was organizing this? Matt?

[MS]

I've tried contacting various urological and pain "associations" and "societies." No one will give a list of pelvic floor or chronic prostatitis / chronic pelvic pain syndrome specialists, without me contacting each doctor or therapist for specific permission. I also tried NIH and even the AMA, but no one wants to release info...

So far, the best link
viewtopic.php?f=45&t=6289