Some food for thought. Has anyone ever heard of Tension Myositis Syndrome (TMS)? Been doing some reading on a forum and a lot of these guys actually have "chronic prostatitis" that they have seen numerous urologists for, have received many antibiotics for, etc. Only when they began figuring out and remembering events that bothered them, which they have burried subconsciously, do they realize that they have actually caused these symptoms for themselves. A lot of these guys deal with OCD and similar disorders, and have suffered from and cured pain in other parts of the body before due to TMS. Seems like the mind-body connection may be a reality for some of us dealing with this problem. I mean, some of these guys, were having all these symptoms up until they had ultrasounds and semen cultures done, and then finally began some serious thinking, and were able to uncover an event that happened very shortly before the pain and urination problems began, and once they dealt with this emotional stress, it seems the symptoms were gone. Also, this one fella, had prostatitis and knee pain for a long time. He ended up having surgery on his knee, which became his first priority. At this point he was worried about recovering from his knee operation, and developed Tinnitus. After he developed this, his prostatitis faded and has not been back since. He also suffers from OCD and TMS.

Just an idea guys. Prostatitis is a merciless cycle. Once we get some symptoms, we begin researching and reading bad things, then we begin to worry. Once we worry, it's all downhill from there. Think about it. I'm not entirely ruling out the infection theory. I think we all might start off with an infection, but once it's eradicated, maybe we are still afraid that it isn't actually gone, thus leaving us in a chronic state of stress/anxiety/depression.

Thoughts?

I'm glad you shared that with us. I have noticed that when I go to the gym, the symptoms seem to subside. My doc told me to hit the gym every day and stop thinking about the problem. Even though I don't feel that it is the main reason, I think there is some truth to this.

How are you taking the protein? If you don't mind me asking. It can take a little while for your body to get use to taking it.

I was also told the same about not thinking about it. Although I am skeptical to believe such an easily given statement, I agree with it to an extent as well. I notice this most when I'm out having a few drinks with friends. My symptoms are almost non-existent when I'm doing this. Later on in the night sometimes I get a tiny twinge of pain in my prostate area, and I notice that if I think about it it will get worse. Very tricky but a lot of this could be psychological.
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Here's a good video to watch. It's pretty lengthy, but worth a look.


This is Tim Parks, author of Teach Us To Sit Still. I found this on one of the TMS forums. Guess what Tim beat? Yup...prostatitis.


https://www.youtube.com/watch?v=NgdnKCtfL_Y

never had a problem with reflex instant whey protein. I've used it for about 9 years. At the start your B.M will change. stick with it for a week and it will probably go away. It cause, at first, cause loose stools.

Address any infection. Start stretching and doing the conscious relaxation of the pelvis. Whatever the trigger initially, it probably ends with pelvic tension. My stress levels are gone down now and guess what? The pain is zero again.

Very good video This needs to be shared!

oh it's all so confusing
https://www.pelvicpain.org.uk/forum/v...5a86e1dfbf4190

A good article by a doctor from Northwestern University discussing why we may have pain for quite some time even after the infection has cured. He truly believes all of this starts from an initial infection.

https://www.prostatitis.org/pdf/chron...heblackbox.pdf

So I stumbled onto this site and this thread in particular 3 years into my journey with Prostatitis/Epididymitis. I feel like I can offer some insight of what has worked for me despite the fact that I am far from cured.

My problems started with epididymitis in 2003, I was diagnosed, took antibiotics, was better in 2 days and forgot about it. It came back 2 months later and lingered and slowly the pain and swelling died off over a year, despite not actively doing anything to treat it.

In 2008 my epididymitis came back with a vengeance and despite trying Bactrim, Cipro, Doxy, and levaquin it continued to worsen. When it finally improved after 3 months it left behind rectal pain, urinary urgency and pain, chills, swollen glands, and other strange symptoms. Thus the prostatitis diagnosis. I was consumed by researching this condition, became massively anxious and depressed, losing 15 lbs and really my will to live. I broke down in tears nearly daily and was lost and hopeless.

I began pelvic floor PT in Fall of 2008, 4 months into my diagnoses. At that time something snapped in me and I went cold turkey on researching the condition and went back to living. I did my best to ignore it and tried to ride out the ups and downs despite being plagued with the chills, swollen glands, and bladder urgency and pain. Over time I got used to it and spent almost 18 months at a fairly steady plateau. Even though things calmed down my bladder sensations were never normal and I never truly relaxed and pain free. Every few months I would have weeks of feverish feelings, swollen glands, etc. Still no Dr. could ever explain why I had these symptoms. I tried to always think that time is my best ally in this battle and over time I'll just get better.

With the stress of having a new child this year I had a flare up and tried a program of prostate massage a uroligist agreed to help with. After 3 massages a day for 3 days my epididymitis came back along with extreme urgency and bladder pain. Since then I've slowly calmed down and have restarted PT. For the past week I've had epdidymitis pain and swelling again for the longest stretch that I've had since this started 3 years ago which has sent me back into the world of internet research on this condition.

I am encouraged to try the protocal outlined in this thread and I definitely encourage pelvic floor stretching and PT if available to you. I know I've benefited from it firsthand but I've always felt something else was missing.

I've always had a lingering thought that despite what countless Drs. have told me, I have an infection that flares up from time to time thus the swollen nodes, chillds, etc. This thread has really brought that thought back to the forefront of my mind, especially with yet another flare up of epididymitis complete with swelling and pain.

I really believe chronic muscle tension is a result of this, not the cause. Treatment must consist of all of these aspects.
I still have a month supply of doxy at home and plan to start trying to beat this once and for all. I'm just so tired of it and want to get back to life.

Very interesting story. Much like everyone else, it seems you started out with an infection as well. Unfortunately, I was never diagnosed with an infection (am only now waiting for my first semen results), but my problems began immediately after unprotected anal intercourse. The more and more I hear people's stories, the more I do not believe that there is such thing as "non-bacterial prostatitis". Personally, this just seems to me like a waste-basket term for the doctors who have no idea what to tell their patients. Let's face it, at one point in time, all of us had normally functioning equipment. We urinated normally, we ejaculated normally, we had no pain...life was good and prostatitis was unheard of. So what went wrong? One day, we all wake up with this brand new devil in our lives. Unless we are talking about cancer, which is even proven to be directly caused by certain things in a lot of cases, we can consider prostatitis an injury to the body. An injury in this case can be considered a direct trauma, or an infection. Now, in my case, I'd bet my life that mine was due to infection. Yours seems to be as well beech. But what about all these doctors that give a diagnosis of non-bacterial prostatitis to their patients? Prostatitis isn't some supernatural phenomenon, therefore it must apply to the simple rules of cause and effect. Something has caused this. For what reason would our prostates just become inflamed one day? Personally, I was an extremely healthy 20 year old male, exercised religiously, had a perfect bill of health, not even one urinary tract infection my entire life. But the doctors are trying to tell me this part of my body is failing for no known or apparent reason one day? I'm not buying it.

Personally, I believe every single case of prostatitis is due to some sort of external pathogen or trauma. We'll call that the cause, and prostatitis the effect. Let's take a knee injury for example. We fall while sprinting at the track, and smash our knee on the ground. Now we are dealing with cuts, scrapes, burns, inflammation, swelling, and PAIN. Did we have this before we fell? No. Something caused our current state. I know I probably sound repetitive here, but what I'm mainly trying to get at is that there is something causing this. Even to this day. Even for the 60 year old guys that have been dealing with this since they were 20. For 40 years, something has been causing this. The human body is so resilient. Just look at the injuries people recovery 99% of the way from. Gunshot wounds, severed fingers that are sewn back on, even successful organ transplants. Yet the prostate has remained such a tricky and unfigurable mystery?

The truth is this. In my 21 years of existence, I have never had to deal with a Urologist. In fact, I have never even known anyone that has in my family or circle of friends, except a cousin that had a kidney stone problem. My first encounter with this field of medicine has been an absolute nightmare. Fortunately, I have been lucky my entire life, especially in this day and age of frequent disease, to always have a clean bill of health. I have never once been to a doctor or emergency room where I had a problem that was not fixable. Worst thing I have ever had was some bad wounds and the flu. All of which I made a complete recovery. Once I saw my first urologist, the skepticism began. On to the second opinion, and it grew worse. Now I'm being told I have asburd diseases of the bladder, also with no apparent cause. Onto the third, a highly respected, well known, award winning doctor; and guess what, I'm not buying his garbage at this point either. This condition should not be chronic. These doctors are lazy plain and simple. Now let me give you my take on the whole "Chronic Pelvic Pain Syndrome".

Do I think there is no such thing as tense pelvic muscles? Absolutely not. There most definitely is such a thing, but it sure as hell isn't causing this much pain. Let's think about it this way. We are all human, we all have stress in our lives, some more than others. BUT. Yes, there is always a but, if there wasn't we wouldn't make any advances in science! How does our stress compare to those who live a high-risk lifestyle pertaining to their professions and such, etc? Let's look at the soldiers in Afghanistan. Everyday, being shot at, watching friends die, explosions all around them, away from home for a several months at a time, with families and children waiting for their return, not knowing if they will live to see tomorrow. Thats REAL stress. Now I ask you, how many of these guys and girls are diagnosed with Chronic Pelvic Pain Syndrome? Their stress level at any given point in the day, is about 10 fold higher than any of ours, even living with this nightmare illness. Now lets throw in the factor of "Chronic" tensing of the pelvic floor muscles, over long periods of time, due to stress. Once again, I'll go back to the soldiers. Some have done upwards of 7 or 8 tours in Afghanistan. The war has been going on for a decade. If that's not long term stress I don't know what is. Throw in PTSD, and you have a real cocktail for chronic prostatitis due to stress. Yet, for figurative sake, we'll say 98% of these people aren't dealing with this ailment we are dealing with (for all I know there could be quite a few people that do have prostatitis in the militaries around the world, lol).

My point is that I am not buying the stress theory. I'm not buying the auto-immune theory. I have a sister who is currently dealing with Alopecia, that's a true auto-immune disorder. It just seems like blasphemy that our bodies will attack our prostates. It's absurd. So the bottom line is that there is a cause for all of this. Present day antimicrobial agents (cipro, doxy, trimethoprim, etc) are all on their way out. These things will be obsolete within the next several years due to anti-biotic resistance. We need new treatments. I strongly believe that this is all related to some biofilm infection. I believe things like Interstitial Cystitis are as well. Isn't it odd that ALOT of people end up with IC right after a BAD urinary tract infection? Hmm.

I've done alot of reading on Bacteriophages, and they look promising. They are able to penetrate biofilms, and destroy bacteria internally. And they are living, so they can adapt to combat resisting bacteria. They can even be genetically engineered and infused with special enzymes that allow it to quickly disassemble even the stickiest, most impenetrable biofilms. I posted about Timothy Lu's work with the phages at MIT. It's truly amazing.

Always remember guys, for every cause, there is an effect. And for every problem, there is a solution. We shouldn't be suffering with this so-called chronic illness. These things don't have to be chronic. The medical field of Urology is made up of some of the laziest people I have ever seen in my entire life, let alone unprofessional, and some of them should seriously be ashamed to hang there MD shingle outside their office.

Thoughts?

I'd say I largely agree with you. After seeing the so called Prostatitis expert in my city who would only say nobody knows anything about this, here's some Lyrica, I largely stopped seeing anyone within the urological community. I relied on a CPPS researcher/Dr. I became acquainted with and my PT.

I tried to believe I didn't have an infection because of the negative cultures but I always thought that I really must have had or still do have one and it's because of the weeks and months I'll go through having the chills, swollen nodes, sinus pain, and other inflammatory problems.

I went from not even having a Dr. or seeing on in years to seeing one almost weekly and bouncing from specialist to specialist for an entire year at 27 years old.

I do think something caused my epididymitis which spread into my prostate which has then lingered for years. This causes the tensing of the muscles which causes pain on their own. I have gotten significant relief from relaxing those muscles but the bladder pain and off and on chills, etc. never have gone away.

I am thinking that I have to be as healthy as possible and give my body the best chance it can to fight this. That means, supplements, anti-biotics, pelvic floor therapy, and abx. Plus obviously a good diet.

Sounds like a good plan. I think a lot of it depends on how long you've had this problem. For me, it's only been about 5.5 months. So I'm hoping I can wipe this thing out. Throw in Allimax when you start the antibiotics. Allimax seems to have a lot of potential against biofilms.

It just really seems that more research needs to be done in this area. Let's face it, chronic illness means money. Pharma companies bank on our antibiotic prescriptions, doctors bank on our office visits, and for those of us getting therapy treatments elsewhere, thats money too. We need PROPER medications to address the blockages in the prostate, and to allow better antimicrobial treatment of the infections. Until that happens, I don't see the cure rate skyrocketing anytime soon. It's sad to say, but so very true. And to say we don't have the technology for this, is complete bullshit in plain english!

Here's some really good reading on Bacteriophages.
https://www.fqmadrid.org/Noticias/inv...nzybiotics.pdf

I should also add that we're not alone in a compulsion to learn about this disease and to research it to death which I know I've done and it seems you have too. My PT says every man she treats with this is the same way.

However I have been my happiest and most normal and had my symptoms most in check when I didn't even consider typing prostatitis in google. I just stopped one day and literally didn't research it again for 2.5 years. I slipped up and started again recently because I'm frustrated about not improving. It's a careful balance of being an informed patient and being negatively consumed by this. I don't know the answer but you really need to limit yourself and get back to living without letting this consume you. It's worst for me when I'm idle and I get to the point where I fear weekends and being alone because I know it can consume me with fear and loneliness and depression.

Hey iwillbecured I am doing a lot better this week .Since I started taking l arginine I feel miles better my symptoms have gone from a 7 down to a 4.It made me feel a bit crappy at first but It seems to be calming down.I could carry on with my life with my symptoms being like this.
I went to see my gp last week with my wife last week because I was very bad .He is very understanding but he knows that it is a very hard thing to treat.
He also told me that looking at my notes when I had a prostate massage and my fluid cultured it was sensitive to cipro in 1998.I think I only took a couple of tablets and threw them away.
He gave me a prescription for some and he said if you want to take them.
I just wanted to thank you for posting all this information on here,it has got me better than I was in January..
You are all puttting great posts on here.Cheers.