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 Prostatitis won't die 
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Prostatitis won't die
Need to commiserate, so here's my story:

1. 2 days following unprotected sexual contact - itchiness at tip of urethra. Got PCR tested for gonorrhea and chlamydia. Both came back negative so PCP refused to give me any antibiotics.

2. Symptoms continued (urethritis) for about a month, doc still refused antibiotics. Finally got into a urologist but by then the symptoms had spread to prostate. At that time I had no idea what prostatitis was. If I could have gone back in time...

3. FF to today, it's been 9 months of this non-stop. I've been on a month of doxy, a month of Cipro, 6wks of levofloxacin (had to give up due to side effects), azithromycin, and 3 months of moxifloxocin. Been tested for every STD possible, had urine cultures, semen culture. Been to three urologists, none do EPS tests.

4. The antibiotics allow me to function normally from day to day, if I take moxi then the pain is about a 1-2 out of ten, but I know it's not a long term solution, and if I try to come off them then without fail, on the 5th day after stopping, the symptoms start to worsen. In a few days the pain is back to a 7-8 out of ten. Like a golfball shoved up my rear, numbness in legs, weakened uring stream. If I start taking the antibiotics again then within a day the symptoms start to reduce and eventually drop back down to barely noticeable.

5. I also tried six days of methylprednisolone as an anti-inflammatory and that also made me feel really good....until of course the 7-8th day when the effects wore off.

Completely at a loss at this point. I'm going to start PT for pelvic floor this week, not really getting my hopes up too high. I'm trying to see how long I can go without anitbiotics this time and go back for a semen culture because when I've had it done in the past my doc had already had me on two months of moxifloxocin before the test so I wonder if that skewed the results. I can't keep taking these quinolone antibiotics because they tear up my digestive tract and cause joint ache and skin acne. Plus I can't just live for the rest of my life on antibiotics when I don't even know for sure if it's a bacterial infection!

Anyway, thanks for reading. I'm only 35yo but at this point I find myself longing for prostate cancer so I can just get the damn thing cut out or something.


Sun May 01, 2016 10:11 am
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Joined: Fri Feb 05, 2016 4:39 pm
Posts: 126
Post Re: Prostatitis won't die
Isn't that insane this condition is so brutal it can actually having you hoping for cancer.
I myself am coming up on 7 months of this hell lost everything in the process.

Honestly i think time and luck are most peoples only hope unless you have a physical abnormality. majority of people I've read stories about take 2 to 3 years to get back to normal well as they say 99%.

I'd HIGHLY recommend stopping the antibiotics i took Cipro for almost 4 months straight and ended up getting horrible gastritis, unless of course you tested positive for bacteria, if you did not it's very unlikely bacteria is involved. Antibiotics are well documented for their anti inflammatory properties.

The heart grieves for what it has lost the soul laughs for what it has found. When we get better think of the courage and compassion we will have gained we will be fully upgraded Buddhas :lol: peace.. friend.


Sun May 01, 2016 2:03 pm
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Joined: Tue Jul 21, 2015 1:41 pm
Posts: 30
Post Re: Prostatitis won't die
Hey guys I relate with you both. I have had a similar path. I'm now 13 months in. I'm counting because I hope it continues to improve and resolve with time. For example, the horrible pain I had in my penis for the first 4-6 months is much better. Now I'm dealing with a persistent daily headache. Things for me started simlar but have evolved and changed into other problems. Right now this condition is better in some ways but still bad in other areas. It sucks Im not healthy this is a long term serious problem. However I remain hopeful that in time I can get it to a manageable point and I hope and encourage you guys to do the same. This too will pass, we need to keep fighting.


Thu May 05, 2016 10:27 am
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
Well I'm here to report some encouraging news. It's been 12 days since I quit all antibiotics. As ever, 5 days after quitting my symptoms got really bad, but I refused to take anything other than aspirin for the pain. I figured that either things would settle out or I would end up in the hospital and it would force some kind of action to be taken. Turned out to be the former - my prostatitis (PT) symptoms have totally subsided and now I just have some mild urethritis (UR) symptoms left. It feels about as good as it has in the past 10 months and no meds other than aspirin!

One thing that helped me is that starting last November, I created a daily excel log where each day I logged my UR and PT symptom magnitudes, as well as tracking when I was on each type of meds, when I had sex/ejaculated(EJ), and just general notes. I had initially stopped having sex or EJ because I figured I needed to give things a rest. At one point I went 21 straight days without any activity down there(!). It's been a struggle... In looking back through my journal, I noted that whenever I went on these long droughts, my PT symptoms would become worse over time. If I EJ'd more often then PT would fade a bit but UR symptoms increased.

Finally I decided to hell with it and I've either EJ'd or had sex 12 days in a row....and PT symptoms have disappeared and the UR symptoms flared briefly but have settled back down. I've found that if I make sure orgasms are relatively relaxed and my PC muscle is less active that recovery is much better.

Anyway, the moral of the story is I highly recommend starting a daily excel log where you can identify and monitor trends over time. It has definitely helped me in identifying trigger factors and abandoning what wasn't helping.

I still go to physical therapy starting this afternoon (which I'm not looking forward to), but given the past week and how rapidly things have improved I have my first real bout of optimism since last July.


Thu May 05, 2016 11:06 am
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
Prostate454, I'm so glad to hear your progress, very encouraging.

Thanks for letting us know, sounds like you're on the road to recovery.


Thu May 05, 2016 1:38 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
Well I'm here to report some good news. I've been to 4 physical therapy sessions so far and my symptoms are reduced to about 5% of what they once were! And this is on no drugs whatsoever! It's looking like my 10 month torture is near its end. No more antibiotics, steroidal anti-inflammatories, no more golfball feeling...no razorblade in the urethra!

As a pretty serious bodybuilder I should have known better than to discount the role of the pelvic muscles so much, but I just didn't think the PT would really do anything and sandbagged on getting in and starting it. Basically we've followed the protocol from A Headache in the Pelvis, to the letter. The first session was really awkward with the EMG and then all the prodding, but I've gotten used to it now. It's amazing when she gets her finger up there and presses on a particular area it just causes all sorts of discomfort in the moment, but a day or two later the symptoms are basically gone. This is especially true with the razor blade urethra pain.

I took my copy of A Headache in with me and pointed out to her where David Wise indicated to work in the case of urethra pain. She pressed on that area and bam! it was like razor blades. Then the next day it faded away and now two days after that no pain. The key has been that it's broken that cycle of clenching due to pain and causing more clenching and more pain, etc. I am able to relax the pelvic floor muscles and everything is returning to normal.

It's amazing how something so simple as being pain free (almost) can cause the sun to seem brighter, the air to smell better, it literally brings a tear to my eyes thinking about the torture of the past year. I wonder how many months of quinolones I could have avoided had I have gone earlier.

So if you're suffering from prostatitis, sick of taking drugs for a supposed infection that no tests are able to identify....get your ass (literally) in for some legit internal PT and see how it works out. I'm a believer.


Mon May 16, 2016 7:27 pm
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
Love to see this, thank you for the update.


Mon May 16, 2016 8:52 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: Prostatitis won't die
Thanks for posting this. Glad you are feeling better.


Tue May 17, 2016 7:21 am
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Joined: Tue Aug 04, 2015 6:50 pm
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Post Re: Prostatitis won't die
Wow, I couldn't like this thread more. Thanks prostate454, glad to hear of your results, I have a PT referral as well, think I'm going to buy the headache in pelvis book and take it with me as well.


Tue May 17, 2016 5:08 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
Just PM'd someone this same info:

I called around to 4-5 PT places in the area asking around for recommendations on pelvic floor therapy and eventually got around to this place. Most places don't do it, as you'd probably expect. The ones that do seem to concentrate on women vs. men. Apparently incontinence is a rather common problem among women following pregnancy and treatment usually involves pelvic floor muscles. So if you can find one of those places that will do the work on men then try it out.

It honestly isn't that complicated. Once you get over the "shock" of having someone's finger up your backside pushing and prodding then it's pretty easy. With the help of the Headache book I think I'm almost up for doing the work on myself. In fact I'm pretty sure I could probably do a better job by myself since I will be able to feel exactly what effect pressing on the various muscles has. Especially now having had someone do it to me and learning the ropes.


Tue May 17, 2016 7:30 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
Latest update:

1. This past week my therapist got the flu so she had to cancel my visits - I went from last Thursday to just yesterday (8 days) with no trips to therapy. After my last visit I was feeling pretty good. Usually the day after is rather sore since all the muscles have delayed onset muscle soreness, and then everything feels good in the following days.

2. With no therapy last week things got progressively worse as the week went on. Finally by Wed/Thurs all my pelvic floor muscles felt very tight and my urethra irritation came back strongly. Since therapy I've become very aware of the difference between pain/tightness in the muscles of the pelvic floor vs. what I perceive as prostate pain or urethral pain in the perineal region. It's become obvious to me now that a lot of the perineal tightness feeling has been due to the muscles just being tightened up and not really prostate inflammation. If only there was an easy way to stretch them out!

3. Yesterday I had therapy again and almost instantly my symptoms improved, I'd even go so far as to say they improved even as she was up there massaging. The urethra pain went from a 5/10 down to a 2/10. Now as I sit here 24 hours later all those muscles are pretty sore from the workout (she was pretty aggressive) but that should improve as the day goes on and into tomorrow. Unfortunately I have to travel for work this week so will be sitting on a place 6hrs each way and no therapy this week. I'm going to really work on relaxation techniques and am taking "the book" with me. Maybe I'll even buy some lube and rubber gloves when I'm out there and give things a go in my hotel room....we'll see about that.

4. One thing that is obvious since PT - I have not had the golfball in the rectum feeling even once since I started PT. This is a major win. The tip of the penis/urethra burning is more stubborn and rather annoying since it really causes an involuntary reaction to clench up the pelvic muscles as I go through my day. It's not a severe pain, but the sensitive nature just causes involuntary spasms that I somehow need to figure out how to resist. I suspect that is the last key to being done with this mess.

Onward til the next update...


Sat May 21, 2016 10:05 am
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Joined: Mon Jan 14, 2013 12:12 am
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Post Re: Prostatitis won't die
prostate454 wrote:
Latest update:

1. This past week my therapist got the flu so she had to cancel my visits - I went from last Thursday to just yesterday (8 days) with no trips to therapy. After my last visit I was feeling pretty good. Usually the day after is rather sore since all the muscles have delayed onset muscle soreness, and then everything feels good in the following days.

2. With no therapy last week things got progressively worse as the week went on. Finally by Wed/Thurs all my pelvic floor muscles felt very tight and my urethra irritation came back strongly. Since therapy I've become very aware of the difference between pain/tightness in the muscles of the pelvic floor vs. what I perceive as prostate pain or urethral pain in the perineal region. It's become obvious to me now that a lot of the perineal tightness feeling has been due to the muscles just being tightened up and not really prostate inflammation. If only there was an easy way to stretch them out!

3. Yesterday I had therapy again and almost instantly my symptoms improved, I'd even go so far as to say they improved even as she was up there massaging. The urethra pain went from a 5/10 down to a 2/10. Now as I sit here 24 hours later all those muscles are pretty sore from the workout (she was pretty aggressive) but that should improve as the day goes on and into tomorrow. Unfortunately I have to travel for work this week so will be sitting on a place 6hrs each way and no therapy this week. I'm going to really work on relaxation techniques and am taking "the book" with me. Maybe I'll even buy some lube and rubber gloves when I'm out there and give things a go in my hotel room....we'll see about that.

4. One thing that is obvious since PT - I have not had the golfball in the rectum feeling even once since I started PT. This is a major win. The tip of the penis/urethra burning is more stubborn and rather annoying since it really causes an involuntary reaction to clench up the pelvic muscles as I go through my day. It's not a severe pain, but the sensitive nature just causes involuntary spasms that I somehow need to figure out how to resist. I suspect that is the last key to being done with this mess.

Onward til the next update...


454 -- does the physical therapist push on your prostate while she has her finger up your anus?

what particular muscles does she work on when her finger is up in your rectum??


Sat May 21, 2016 7:24 pm
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Joined: Tue Oct 27, 2015 3:26 pm
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Post Re: Prostatitis won't die
This is good news. I've done internal therapy as well but without as much success. However...the first place I went, I feel like they just weren't experienced and didn't get to the muscles they needed to get to. I see another therapist named Marilyn Freedman in Long Island. She's much more thorough. I've seen her here and there but am about to start another regular run next week, and hopeful that it gets me closer to the finish line. I've gone from an 7/10 to a 4/10 in 1.5 years...it's just glacial progress. At least it's progress.

Do you care to share who the therapist is that's helping you?


Sun May 22, 2016 1:14 am
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Joined: Thu Oct 08, 2015 9:11 pm
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Post Re: Prostatitis won't die
What is the name of the spot to hit for urethral pain, I am going tomorrow and don't have the book.

Thanks


Mon May 23, 2016 6:25 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
Satch wrote:
What is the name of the spot to hit for urethral pain, I am going tomorrow and don't have the book.

Thanks



Anterior Levatator Ani - basically the front portion of the muscle. When she works this it really feels like I'm peeing all over the place right on the table. It can be pretty uncomfortable in the moment but goes back to normal as soon as pressure is removed.

FYI I'm basically pain free today. That's strange given that yesterday I spent 6-8 hours just sitting on planes and in airports. No complaints here though.


Tue May 24, 2016 10:53 am
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
Prostate454, glad to here you're pain free, cherish the moment, I've been doing really good the last 2 weeks only to have it flare up again to about a 8 out of 10, got to love the mind games this crap pulls.

For some reason i never have pain from sitting. that famous golf ball in the butt feeling never has affected me either.

I've been doing Neverlookbacks approach using a external massager and have found spots all over that are tender as hell, Interesting thing is when i press on some spots, it causes pain to occur in other areas.

For people that are not sure if you have a infection or a muscle and nerve problem i highly suggest using a external massager, you will quickly find out by where the pain is located if it's a infection or not. if you have spots of pain away from your bladder and prostate area it's almost for sure a issue with your muscles and nerves. I actually have spots of pain even above my belly button, makes me question the gastritis diagnosis i received.

Interestingly i was reading posts at the IC forums, and a one of the owners of the site commented explaining how PT helps people far more then any of the pills and bladder treatments, Huh.. Also I've read in "A Headache In The Pelvis" that a patient that had severe IC had her bladder removed only for the pain to persist, I've read many cases of guys removing their prostate only to have the pain remain too. It's very important to do the external, and internal, PT route you can do this yourself. With a external massager you can find trigger points easily, be persistent, with a never giving up attitude. for example this one dude in the Headache In The Pelvis book, Did this method for five years, (Ya i know sucks) but he continued on and now is completely better.


Tue May 24, 2016 12:42 pm
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Joined: Thu Sep 04, 2014 11:39 am
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Post Re: Prostatitis won't die
Thanks for all the info, daily. Really helps to better understand this condition.


Tue May 24, 2016 4:47 pm
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
No problem my friend.


Tue May 24, 2016 5:24 pm
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
Here's the exact comment. I was just talking with a patient on the phone who has urgency and was explaining how the pelvic floor can contribute to, if not cause, many of the bladder symptoms we normally associate with UTI. In fact, of all the therapies ever studied for IC, the single most effect therapy was pelvic floor physical therapy... outperforming bladder treatments and oral medications almost 2 to 1. Many researchers now believe that the majority of men diagnosed with chronic prostatitis also have pelvic floor dysfunction/injury too.


Thu May 26, 2016 11:55 am
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Joined: Thu Sep 04, 2014 11:39 am
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Post Re: Prostatitis won't die
Thanks daily. There is the possibility that IC and CPPS have much in common. Inflamed said that he knew someone that recovered from IC after taking olive leaf extract for a year. A coincidence? Maybe.

I ordered the OLE but never took it as I am experimenting with diet and foods.


Thu May 26, 2016 1:48 pm
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Post Re: Prostatitis won't die
I cook with olive oil every night.


Thu May 26, 2016 4:48 pm
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Post Re: Prostatitis won't die
chris85 wrote:
I cook with olive oil every night.


I use raw olive oil in every meal. Entra virgin olive oil. I never cook it.

EVOO and OLE are two different things.


Thu May 26, 2016 4:59 pm
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Joined: Sun May 01, 2016 9:48 am
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Post Re: Prostatitis won't die
Update: Just returned from travel so have now gone 8 days without any sort of therapy. Sitting on the plane and in airports for 6-8 hours each way wasn't as bad as feared. On the way out on Sunday things were kinda sore but coming come yesterday...nothing. It's not been three days without any real symptoms at all. I'm very glad about this since I thought going without PT for so long would be bad. It really feels like the muscles have finally relaxed and the lack of pain has allowed me to avoid clenching up. I'm going to have 2 PT sessions this week coming up. Hopefully in the next week or two I will no longer have to go at all and this sorry chapter of my life can be put behind me.


Sat May 28, 2016 3:08 pm
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Joined: Sun May 01, 2016 9:48 am
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Post Re: Prostatitis won't die
So I just finished my fifth or sixth therapy session after ten days without any and I feel amazing! For the first time I literally feel really good after the session. It was just like I had a really good workout in the gym and the muscles feel nice and relaxed and sore from all the stretching.

I cannot believe the transition from being absolutely convinced that I had a prostate infection for months and months only to have such improvement by abandoning all drugs and diving into a handful of sessions of some lady's pointer finger in my rectum.

I'm sure it's not the solution to every case, but I'll repeat...if you haven't tried PT then you haven't exhausted all options yet.


Tue May 31, 2016 7:20 pm
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Joined: Fri Feb 05, 2016 4:39 pm
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Post Re: Prostatitis won't die
So glad you're doing well! keep it up man..


Tue May 31, 2016 7:34 pm
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