Any new novel approaches?!

[emt4747]

I feel like this condition is still not going ANYWHERE in terms of progress! I am an anesthesiologist and I have access to all the journal articles I want - yet I see that except for the MAPP and NIH organizations this condition is still in the prehistoric days with little attention being paid to it. There are no advances in the etiology or remedies and the same disgusting treatment plans that have failed over and over in randomized trials are still being employed today!

If we want to cure this in our lifetime gentlemen we are going to need to come together as a group and help one another with PROVEN treatment plans that HAVE CURED- not just alleviated momentarily. I believe we have the power to do this as a whole but we need data- we need numbers- and we need people who are willing to try NEW NOVEL techniques.

I've tried all the traditional approaches to this debilitating horrible condition with little avail (months of oral antibiotics, anti inflammatories, etc). I have started trying novel approaches that not many would try. For example, I did a 14 day intra-rectal antibiotic route of various antibiotics (including IV versions of amikacin and other aminoglycosides) with remarkable but non-sustained results ( I had a 8/10 to a 1/10 that lasted about a week). I am now trying immunosuppresive therapy- yes extreme but again A NOVEL approach. I am taking a steroid pack and am thinking of trying infliximab or cyclosporin or other T cell inhibitors.

Many of you will tell me to do stretches, pelvic physiotherapy, yoga- TRIED THEM ALL- momentary with no SUSTAINED effective relief.

If anyone of you are out there and are willing to go the extremes to see if we can get our lives back then please CONTACT me - I can help you get novel treatment plans that may or may not work but at least we are trying new things that may have the potential to finally rid of this horrible condition and not depend on moronic professionals who are clueless on this disease.

Trauma/Inciting event/infection---- inflammation ---- chronic threshold obtained with spontaneous firing or misappropriate firing of nerves- muscle pathology/spasm. The above is an insight of what has likely happened to many of us (based on my understanding and hundreds-thousands of hours of research into this field) - how to break this cycle is where we can solve our problems. TOGETHER WE CAN LIVE AGAIN- JOIN ME PLEASE.

[johnnyblotter]

It's a befuddling and extremely frustrating problem. It messes with your head. I'm with you. The fact that there isn't any real treatment is a travesty.

I've been thinking recently that a celebrity spokesperson would really help this cause. I know John Cleese has suffered from it. Perhaps people should start tweeting him or other known sufferers. I'm serious. I hate this feeling like we're a bunch of sad, screwed up guys lurking around these forums, cursed with this misunderstood disease that no one knows anything about.

After reading as much as I can about it, I still have no idea whether it's a hard to treat bacterial infection or muscle spasms that are extremely difficult to deprogram.

As far as an "extreme" solution, I know you mentioned stretches, physiotherapy, and yoga...however there are people whose stories I've read who claim to have beaten it with extreme work put into to fixing their alignment. One such method for doing this is called "restorative exercise". There's a guy in England named David McCoid. You can look up his website. I hired him and did four sessions with him. He claims to have suffered for 14 years, he went through the Wise Anderson protocol (which he says didn't work), and he says he is symptom free after 8 months of doing restorative exercise and I believe him. Personally I have yet to see results working with him, but this is because at about week 10 I tweaked my back doing some of the exercises and had to stop (I had surgery 3 years ago and have to be cautious about pushing it). I'm now trying to figure out what steps to take next as my symptoms are less but still annoying.

In fact the only people who have claimed to have beaten it in a reasonable amount of time seem to be those who take this hardcore alignment approach. Here's another guy who claims to have beaten it by focusing on alignment:

http://liveinyourbodyaligned.blogspot.c ... order.html

Admittedly I didn't get real relief, and I did the restorative exercise stuff pretty religiously for about 10 weeks. It's a lot of work and it was frustrating not to really benefit...however, it took David 8 months to beat it. So, in fairness I wasn't able to maintain the regimen long enough to make any claims.

I've spent significant amounts of money on internal P.T. work and I'm leaning heavily toward calling the whole thing pointless. I'm much more inclined to think that working to align your body would be more likely to be effective.

What makes the whole thing confusing is that it just FEELS like it's infected...when I really don't feel good I start thinking I should go get every test possible...semen, EPS, urine, and see if there's anything in there.

Complicating it further I also have IBS types of symptoms, so I'm thinking about seeing a gastro as well.

The problem is I feel like it's likely to cost me thousands and leave me at square one.

So I think I'm going to try again with the alignment work and possibly medical massage.

It's very rough. Again...I think a celebrity spokesperson is what this problem needs.

[emt4747]

It's not a bad idea - but again nationwide exposure won't solve our problems this year or next- working together and trying new realms and attacking the pathophysiology at different angles will ultimately claim success- just like any other disease process (multiple sclerosis, cardiomyopathy, ulcerative colitis). Understanding this fundamentally will lead to new effective treatments but as of now the research is not there yet so we need to do trial and error on our selves. I've read all the ridiculous things people have done (understandably since this condition is so debilitating) - and I've tried many of them quercetin is the only thing that has proven beneficial so far along with intrarectal antibiotics and narcotics.

If any of you are willing to try neuroablation, nerve stimulators, 5 alpha reductase inhibitor therapy, again new ideas then message me. We need to think sophisticated on this- it's not as simple as an infection- likely there is no infection- the nervous system as a whole is messed up and one needs to think at this angle to cure or get sustained effective results.

Also we don't need celebrities- with social media we can get enough publicity but we need adamant users to post.

There are many ways everyone can help even from this stand point- hiding in the dark behind forums will only perpetuate our misery.

[webslave]

I find it hard to believe that an anesthesiologist who has studied all the research would subject himself to "months of antibiotics" and even intrarectal antibiotics, but it just goes to show that even doctor-patients can be foolish when it comes to CPPS.

If any of you are willing to try neuroablation, nerve stimulators, 5 alpha reductase inhibitor therapy, again new ideas then message me

For reasons outlined elsewhere, the private messaging system is turned off. If you are willing to make your name and contact details known here, then go ahead. If you are inviting men to undertake unusual treatments, you need to be upfront about who you are and not "hide in the dark".

the nervous system as a whole is messed up

Yes, the nervous system is "messed up", but I know of no quick way to correct it. If you come across one, you'll be up for a Nobel Prize.

In my opinion, heroic treatments and Hail Mary passes are doomed to failure when used to treat psychoneuromuscular conditions.

In a month or so I'll post all the latest research and ideas from the 2016 AUA Meeting in San Diego. That should be interesting reading.

@johnnyblotter: the "alignment" stuff is completely unsupported here by any patient testimony, and there is no research. Until further evidence is presented, it seems to be yet more quackery.

[johnnyblotter]

@webslave: I have to disagree. Did you read this?

http://liveinyourbodyaligned.blogspot.c ... order.html

David McCoid also claims a full recovery, as well as a few others on other forums, by focusing heavily on alignment.

Calling that approach quackery seems to be throwing out some very powerful "patient testimony". Why does the testimony have to be here? Who cares where it's from?

Anytime someone says they've recovered from this and they seem reasonably intelligent, I'm paying attention.

You yourself said in a thread here that some men may respond better to something like restorative exercise.

[webslave]

Yes, I read it, and to be kind it's a mish-mash of ideas, including some we recommend:

First off, you have to learn how to relax and let go of your pelvic floor. You are probably not aware that you are holding your pelvic floor tight all day long

In amongst it he inserts completely speculative stuff about "misalignment". This is a de novo, ex nihilo theory made out of whole cloth. But it's harmless, so if it gives you the hope you are looking for, it may have some use.

[emt4747]

Webslave with all do respect you may know about this condition from other people and maybe even from yourself- but I assure you with this disease you become quite desperate and start shooting for any hopes of a proper treatment plan including antibiotics. If you were a little knowledgeable about modern medicine and why I did intrarectal antibiotics maybe you would understand that it's not the antimicrobial effects I was looking for.

My name is Eric Michael - anesthesiologist in Florida. My email is [email protected].

Good luck in your AUA 2016 meeting - I've spoken personally to some of the leaders in the field including Shoskes and up-to-date authors and others- and it's pretty disgusting at how much lack of progress there still exists.

I'm not saying there is a quick fix either- however- the alternatives we have are immensely subpar. The way to advance this field is to start doing new innovative ideas that may conclude a new novel effective approach. And then yes webslave I will go up for my noble prize. Penicillin. Vaccines. You think these treatment mistakes (I say mistakes as they were accidental findings) were accepted at first - eventually things start to work and then they become accepted. But the leap of faith needs to happen first.

[webslave]

Um, Michael, I am knowledgeable about modern medicine (I spent some time at med school and I've spent 26 years studying this disorder), and yes, I do know about the "other" effects of antibiotics, and yes, I am an ex-patient myself (more about me here).

I suspect that if you are looking for a silver bullet cure, it will always seem as if there is a 'disgusting lack of progress'.

But I admire those who are willing to experiment with novel treatments, so have at it.

[greg1968]

It's a extremely frustrating problem. It messes with your head. I have been trying oils and it not helping at all. Hard to believe with all that is out there, there is no real treatment.

[smackman]

I have had this problem over 3+ years now. I have been to many Urologist including Baylor in Dallas, Texas and no Urologist would ever give me a diagnosis of CPPS. Most said they seen nothing wrong. One said I had IC which is possible but for my big issue to be penis tip pain and not have frequency in over 30 months and no bladder pain and also I had A cystoscope done 9 months ago where the Urologist at Baylor found nothing wrong with my Urethra or Bladder or prostrate etc.......

I believe I have CPPS and possibly some bladder irritation. Who the Heck knows........ This Chronic issue sucks and it has taking a major toll on my Life.

[emt4747]

Well gentlemen - as I said- if your willing to start trying new approaches for a problem that is obviously not been adequately elucidated, then start emailing me and I will start giving you data and new point of views that might just work and give us our lives back. Again, the issue with this syndrome is psychoneuromuscular- for the billionth time and the only people who have come to realize this aside from those like webslave and myself who have done extensive research in the field are the new investigators who are just starting to understand this concept. Even the authors of headache in the pelvis and andersonwise protocol have some idea in this realm but the concept as a whole is still grossly misunderstood. This is why so many treatments in the past have failed because the approach has been all wrong. It's similar to saying give antibiotics for a viral problem- until The pathophysiology going is understood no effective treatment can be created.

Unfortunately this may take decades and I'm unwilling to wait for modern science to conclude which receptors, cytokines, chemokines are up/down regulated in each person to create the perpetual cycle we are all in. Thus, we need to start experimenting on ourselves and see what helps and what doesn't. It is my firm belief that all of our symptoms are linked to a common etiology- albeit perhaps different exactly which mechanism perpetuates it per individual. For example patient x has the issue because of autoimmunity towards a receptor on the nerve as opposed to patient y who has chemokine xyz unregulated and firing off inappropriately. And furthermore patient z has a nerve muscular contribution due to ischemi from myofascial suffocation upstream or inability to get rid of waste products from the same concept. However all will display similar symptoms since the area as a whole is under attack per se.

I know it's frustrating and hard to not know- but only trial and error with this concept in mind will lead to eventual success. WE CAN DO THIS- but we need to work together and compile our own data. With the help of this website and perhaps social media it is quite feasible to bypass decades of research.

Eric

[email protected]

[greg1968]

Eric,

Did you get my email ??

[emt4747]

Yes I wrote you back

[emt4747]

http://www.pelvicpainrehab.com/male-pel ... sfunction/

Read this article- follows similar concepts to Wise/Anderson - but I still feel there is so much missing from the picture. If it were as easy as PT and biomechanical feedback- many of us would have sustained durable cures without relapses with treatment. However, this is not the case from my experiences. Again, this may help for some that the root cause is abnormal contraction - but for those that continue to suffer despite PT - likely more neuromodulation should be considered as the PT portion mainly covers the muscular component.

[jcacciat]

Late to this topic, but I want to add my thoughts. Personally, I believe this condition requires both a "bottom up" approach and a "top down" approach to treatment. The "bottom up" approach is trigger point therapy and physical treatment modalities. The "top down" approach is retraining the brain and getting at the psychology of the condition. David Wise will tell you that this is his protocol, but Paradoxical Relaxation, in my view, is not an effective way to retrain the brain or treat the psychological aspect of the condition. Others may disagree. If you are looking for different ideas for how to deal with what I will call the neuropsychological aspects of this condition, I would suggest learning about the methods and teachings of Dr. John Sarno, Dr. Gabor Mate, and Dr. Jonathan Kuttner. In essence, these practitioners adhere to the idea that conditions such as CPPS are caused by emotional disturbances from childhood and beyond, and that chronic pain diseases are the result of stress placed on the body by the unconscious mind, the subconscious mind, and/or the conscious mind. There have been many strategies developed for retraining the brain and one can easily find these on the Web or in the many books on the subject of mind-body healing. The TMS Wiki website is a good one, although that site advocates abandoning all physical treatments, and I do not think that is necessary to get well.