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 Prostatitis won't die 
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: Prostatitis won't die
On day 6 of fosfo and here is my update:

1. Prostate feels a lot better. Ejaculation doesn't cause pain the next day and I generally only notice very mild symptoms during the day. I'm doing my now-regular daily routine which is self-massage of prostate, only change is the abx. If I could only keep this level of pain permanently I would be extremely happy.

2. I have 9 sachets in my current Rx, so 18 days worth of treatment. If my symptoms continue as good as they are then I might try to extend. It depends on my stomach. I submitted stool sample this morning for c diff test to make sure I don't have any residual infection left over from when I had it last year. I'm keeping a close eye on those symptoms as I don't want a recurrence. My stomach feels some mild nausea which isn't too alarming, and if anything I notice a slight improvement in my diarrhea since starting the fosfo. Anyway, I'm proceeding cautiously.

3. I'm not getting my hopes up at this point. I don't know why this time would be any different as I've had stronger abxs in the past with better prostate penetration and no cure from them. I'm fully expecting to come off the fosfo and relapse after a week or two. Still, I do feel better so far than I have previously even on abxs - maybe the addition of the prostate massage changes things...or maybe this just happens to coincide with a reduction in flare symptoms and it's all a red herring. That's all for now.


Tue Jun 06, 2017 1:17 pm
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Post Re: Prostatitis won't die
Thanks for the update. I finished reading dr. Sarno's books.


Wed Jun 07, 2017 10:01 am
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Post Re: Prostatitis won't die
Very keen on your progress.. please keep us informed..


Wed Jun 07, 2017 6:01 pm
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Post Re: Prostatitis won't die
Eh, been more sore the past two days - more typical of normal. I suspect the improvement of symptoms just happened to be one of those times where I have minimal pain that so happened to have coincided with starting the abx. I still have a couple more weeks to make a call on that through.

However...I have had pretty bad IBS type diarrhea non-stop since I had c-diff last fall, over 6mo ago. I attributed it to post-infection IBS which can happen. Nonetheless, when I started taking fosfo it got worse for two days and now is gone entirely. My stools are much more typical of what I had prior to the infection last year. My gastro said she thought my digestive troubles may have been due to SIBO and perhaps she was right and this killed off the overgrowth in there. So if anything...even if it does nothing for the prostatitis at least it's helped the digestive troubles, which were actually getting to be just as impactful on quality of life as the prostatitis. I'm finally able to sleep through the night without having to go to the bathroom!


Thu Jun 08, 2017 8:47 am
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Joined: Sun Apr 10, 2016 12:08 am
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Post Re: Prostatitis won't die
Ahh well thats at least one positive. Id be taking it for a while, i assume you are taking one sachet every 48 hours?

Cheers


Thu Jun 08, 2017 5:03 pm
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Joined: Thu Jun 15, 2017 8:17 pm
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Post Re: Prostatitis won't die
can i just ask everyone, ignorant question time... but why is surgery not an option for chronic sufferers that treatment cannot help currently?


Thu Jun 15, 2017 9:04 pm
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Joined: Sun May 01, 2016 9:48 am
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Post Re: Prostatitis won't die
So this past week I passed my lovely two year anniversary with prostatitis and figured it was time for an update:

1. I lasted about a month of fosfo and then all of a sudden my c diff relapsed. Middle-of-the-night trip to the ER by myself (wife was traveling) confirmed it and thus ended forever my use of antibiotics for prostatitis. Ultimately I demanded dificid for the c-diff and now about four weeks later my digestive system feels the best it has in over a year. So at least that's done with. This c diff relapse was worse than the original c diff I got last year. Not fun at all.

2. The same day I got c diff I also got a pudendal nerve block to see if that helped the prostatitis (no I didn't plan it that way...and there were some interesting side effects to the nerve block). It didn't really help my prostatitis and for several days caused an intense burning sensation along the nerve - which included my urethra and rectum. The fact that I had this in concert with the c diff diarrhea was really problematic. By itself the burning wouldn't have been as bad. After a few days the burning subsided and things were ok.

Interestingly enough, about this timeframe my symptoms started improving a bit. Most days were a 1/5 on the pain scale. I don't know whether it was the nerve block or the fosfo. I didn't feel that much better while on the fosfomycin so I'm skeptical to attribute it to that. In the past I've been on much stronger abxs than fosfo and for much longer time periods, so I don't see why fosfo would be special vs. levaquin, cipro, and moxifloxacin. The only thing I did differently this time around that I had never done before while on abxs was daily rigorous prostate massage. Maybe that had something to do with it. Or maybe it's unrelated.

3. In my latest treatment journey...just two days ago I had a ganglion impar block. I don't want to speak too soon, but this has been significant. I had none of the burning that I had with the pudendal block, and basically all of my prostate and urethra pain has been gone in the past two days. Almost true 0/5 pain days. I even ejaculated yesterday and experienced only minimal increase in symptoms today. To be fair, my symptoms had been improving markedly anyway over the past month, but this was definitely a kick in the pants. The impar block can be used specific to chronic pelvic and prostate pain. I'm going to have to continue to monitor it over the next couple days and see how it shakes out.

http://prostatitis.org/redirect.php?lin ... par-block/

In summary, I'm either in cyclic lull of symptoms right now, or else I'm definitely seeing some light at the end of the tunnel with this disease. It's going to take a few more weeks to ascertain which it is. I've had lulls in the past but this one looks to be more significant than my previous ones.


Thu Jul 27, 2017 5:25 pm
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Post Re: Prostatitis won't die
I've been continuing the trend of feeling better and better, albeit slowly. Most days the pain is at a 1/5 with some more 0/5 thrown in the mix. Every once in a while I'll get a 2/5 pain day but this is usually associated with some form of digestive problem down there or else a masturbation flare up (though these have gotten much less as well). The mental aspect of knowing a 2/5 pain day will only last a day or two max is so reassuring.

The only real variables in the mix, aside from time, are the two ganglion impar nerve blocks I've previously had and also some medicine I've been taking for my hips. For the past 8mo I've suffered from trochanteric hip bursitis (unrelated to prostatitis), and about a month ago my doc prescribed me diclofenac (a NSAID). It didn't make much difference in my hips nor did I notice any instant relief from prostatitis but I've soldiered on with it for just under 30 days now. I'm not on any supplements at all aside from a daily vitamin D capsule.

I'm hoping the improvement in my prostatitis is not due to the diclofenac. I've noticed such a good improvement in the past two months - even better than when I was on steroid anti-inflammatories last spring. If it's real then I'll be over the moon. I haven't even done any internal stretching in several weeks. Earlier this year I couldn't go 2-3 days without stretching or else I'd be in agony. Now I don't even notice it when I'm up and about. Sitting all day at work increases the symptoms slightly but not nearly to the extent they were before. I haven't had any meatus pain/inflammation in a long time. Frankly the bursitis annoys me more than the prostatitis at this point, which sounds slightly ludicrous to say given where I've been over the past 2.5 years with this dreadful disease.


Mon Oct 23, 2017 5:00 pm
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Post Re: Prostatitis won't die
Time for a quick update...

Since last posting I learned that indeed much of my improvement was due to the diclofenac. This was very frustrating, it stings to taste freedom only to have it taken away again. I developed bad hemmorhoids in October as a result of the constipation from the NSAID use and finally tomorrow I'm going to go in for rubber band ligation. Swell, more rectal probing.... The hemorrhoids have really flared things up in the past month, I even had a 3/5 pain day which is the first in about 9mo. It's all due to the tension I hold from the intense rectal pain. I have no doubt it will go down dramatically if my procedure is successful.

Aside form that I visited Dr. Pontari at Temple on Monday. I was last in to see him in April of last year. We went over my progress, and I noted that yes I was feeling better than when I last saw him, albeit it was glacially slow progress. He indicated nothing about that seemed odd to him, and that it was typical for these things to progress super slowly. Did a whole bunch of Q&A but that was about it. He prescribed me a longer dose of tizanidine to try this year, I had some improvement on it last year even with only a 30day course. Now I have about 5mo worth of it to test out.

And I still have my friggen hip bursitis pain. I have come to realize that the most likely culprit there is the tension in my pelvis - it's been a year now that I've had the hip problems. In the past month I have discovered just how subconscious the tension has been, and how it caused me to hold my pelvis in a "pelvic tilt" that had just become my normal posture. I have no doubt that over the years this has irritated my hip flexors and gluteals. I am now in PT for that and have already had some minor improvement, along with really concentrating on my posture and relaxing my pelvic floor. One problem is the hemorrhoids are preventing me from doing proper internal stretching which is limiting progress.

When pain is increased, as it is right now at this moment, I notice that I'm not able to relay my kegel muscles completely. It's like they're stuck in a mild flex. When pain is reduced, I have no problems doing the "reverse kegel" and relaxing. through the bursitis I'm able to see just how much inflammation can be caused by tension in the pelvis region (it's not like I have infection in my bursa afterall). It would not surprise me that this pelvic floor tension is the difference between being almost symptom free and having that annoying fullness feeling and pain in the prostate region.

That's the news for now.

Oh yeah, and in good news, my last round with C-diff last year seems to have cured my IBS-D. Must've been the flora reset down there following the Dificid treatment, whatever the case for the first time in my life my BMs are almost what I'd consider normal now! This has proven to be a problem with my hemorrhoids....but once they're gone I will be pretty excited for it!!


Tue Jan 23, 2018 9:31 pm
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Joined: Fri Dec 02, 2016 1:09 am
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Post Re: Prostatitis won't die
I opened a new thread for my update but ill put it here since this is open already:

I know I havent been on in a while but staying off this site has been part of my healing process...I have been completely symptoms free for months now....No pelvic pain, upper thigh pain after urinating, no pain after ejaculating or sex...I have been very thankful and appreciating every day....What has really helped heal me is TIME...I think we all have prostatitis definitely but just have different symptoms or intensity of it...For me, I only took cipro(which i think really messed me up) and amox once each in the beginning....After that, I went the natural/supplement way route......, after sitting back and looking, my pantry looks like GNC for real...I have spent alot of money and that blow job was so not worth it.....I do think the 2 supplements that helped me the most was zinc and black seed oil w/ honey....When i started taking those 2, the prostate started to for the first time feel normal..For some reason, I really feel that taking antibiotics suppress the body's natural way of healing........ overall, im functioning great bUT i do think I have PTSD.....I still have that touch of pananoia and anxiety....I still look to see abnormalities with my body and my wife but not as bad as before....I think this is just going to really take a much longer time to heal, hopefully.......So recently, I had to take some antibiotics for a sinus infection.....After finishing the antibiotics, I recently notice that my semen has a slight green tint to it like infected snot....I have no symptoms but I try not to get too paranoid...did taking the antibiotics allow a infection to come back?....the semen is clear initially but when I look at the tissue, I see the very light green tint after masterbating....But the other night, sex with wife and the semen was white....so weird....anyone experience this...could just the quick masturbating cause it? .I do know your semen can change color with age(42yrs old) sometimes but I will monitor.....


Thu Jan 25, 2018 5:37 pm
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Post Re: Prostatitis won't die
Quick update on the rubber band ligation for the hemorrhoids. Biggest non-event ever. Took like 5mins and was about as non-invasive as you could ask. Already feeling significant improvement. I have to go for two more treatments in a few weeks, but I'm not worried. highly recommend biting the bullet and getting it done if you have bothersome hemorrhoids.


Thu Jan 25, 2018 8:30 pm
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Post Re: Prostatitis won't die
Going to post this same follow-up in my original thread just to close out the journey...

Apologies for the delay in responding. I knew this was going to be a rather long post so I’ve been putting it off….I’m going to summarize my thoughts on prostatitis below:

1. What type of prostatitis did I have? I haven’t really formed my own opinion on this one. Over the years I’ve wavered back and forth. Its appearance was clearly associated with the extramarital sexual encounter I had back in 2015 as symptoms started 2-3 days afterward. This encounter was extremely stressful to me and I had a crushing amount of guilt associated with it. So you could make a strong case for NBP. On the other hand, within a day or two I had bad urethritis symptoms including extensive discharge, meatus irritation, and painful urination. So you could also make a strong case for bacterial origin.
But I never really had a conclusive positive culture proving anything. I once had a positive enterococcus semen culture, a positive e-coli urine culture, and a positive e-coli post prostate massage urine culture. All three were after extensive abx treatment so I remain skeptical that they were significant aside from normal flora down there. I never tested positive for any STD other than possibly type 2 HSV (low positive – never have had any lesions). I also had a number of negative urine/semen cultures. CAT scan never revealed any abscesses despite showing enlarged prostate. I never had any blood in urine or semen, and I’ve probably given about a dozen urines sample for test (as well as semen) and none ever showed any WBC. So I really don’t know whether it was CBP or NBP. I do believe it was prostatitis and not CPPS since my prostate was shown to be inflamed.
2. Attempted Treatments…I tried most everything I could. I’ve been on a ton of ABXs (doxy, cipro, levo, moxi, fosfo, augmentin, flagyl, vanco, dificid), nerve pain drugs (gabapentin, lyrica), anti-inflammatories (daypro, methyl-prednisolone), random herbal stuff (Q&B, turmeric, saw palmetto, bee pollen, etc), various supplements, pelvic floor physio, nerve blocks (ganglion impar, pudendal), heck I even almost got a spinal stim implant for the pain.

3. What worked? Not much. The most relief I had was from prescription anti-inflammatories. NSAID were the best because I could take them for longer periods. Steroidal AIF were good but you generally only take them for 5-7 days so by the time they start to work you’re done. Of all the ABXs I took, I only ever noticed improvement on Moxi. It was a marked improvement, but 9 days after stopping the pain would come right back as bad as ever. So I’m not convinced it was anything more than the AIF effect of abxs working. Some days I thought fosfo might be working but it was probably placebo.
I had very good results with pelvic physio. Almost as good as taking AIFs. Eventually I learned to just do it myself and kept that up for a year or so. But it was never a cure, it was sort of like a side-effect free coping mechanism.
4. What hurt? The #1 cause of flaring for me was masturbation. I would be really sore for 3-4 days afterward, as though my urethra was sandpaper. Actual sex didn’t generally cause an increase in pain but for some reason masturbation did. Edging would make it way worse so eventually I learned to do “relaxed” orgasms…but even then they still flared. I gave up all ejaculation for a month at one point but it didn’t cause pain to go away though. Sitting a lot caused an increase in pain. On weekends away from work when I was active around the house the pain was less, especially after about 2yrs. But it never really went away 100% until about 2yrs in when I would have a day or two every month without pain (and it spurred hope). Oh yeah, the absolute WORST offender was nasal decongestant. Before I learned that pseudoephedrine sulfate was a no-no for enlarge prostate I was taking Claritin (summer-2016). It got so bad that I almost went to the ER because of the pain. Then I found out about the interaction and discontinued use of all nasal decongestants (Sudafed, Benadryl, Nyquil/Dayquil) and things settled back to the normal state of pain.
I also found that the state of my digestion greatly affected my pelvic pain. Hemmorhoids, constipation, diarrhea, and worst of all…the dreaded anal fissure (a fun side effect of long term NSAID use) all cause my sphincter to tense up and this would translate into worse symptoms.

5. Who helped? I went to 5-6 uros, a couple pain mgmt. docs, ID doc, PCP…and they were generally sympathetic, but all those in the know basically told me that science really didn’t have an answer in these chronic cases and there was only so much they could do. Dr. Pontari was the uro I finally settled on and seemed to be the most knowledgeable. And he was ultimately proven right (“time” was really the only cure).

I wish there was some magic pill that I took that made it go away but it didn’t work that way. Up until just recently I have kept a daily log of symptoms and pain for the past three years. I rate my pain each day on a scale from 0-5 and have done this every day since 2015. And when you plot the graph, you can clearly see a peak in 2016 and then a very slow decay in symptoms from then on, often in fits and starts. Eventually in 2017 there would be a zero pain day every so often…and over a year or so these days started to become more frequent and my hope increased. Eventually I had more zero days than not, until eventually I had basically all zeroes and finally stopped the log. If I can figure out how to post the graph up I will do that. It’s rather telling.

If I had to do it all over again, knowing what I know now, here’s what I’d have done (aside from avoiding the whole encounter in the first place!!!):

1. I’d have gotten a post massage urine/semen culture before any abxs
2. I would have done ONE course of ABXs – probably moxifloxacin – for 10-12wks. After that I would have done no other. I can’t tell you how much pain abxs have caused me. I’ve had c-diff twice and landed in the ER both times…and because of that I now have chronic esophagitis, gastritis, and duodenitis. My system has never quite felt right after all the abxs. It’s improved, but never like it used to be.
3. I would have then done pelvic floor physio
4. I probably would have tried the more mundane supplements like Q&B, turmeric and so on since they have minimal side effects
5. The rest was just time, which can be so hard when you don’t know whether it’ll ever get better. But for most of us it does, we have to try and keep that in our minds.


Tue Oct 09, 2018 8:07 pm
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Post Re: Prostatitis won't die
Hi 454, I can relate to the gastritis and esophagitis you're going through after the antibiotics, I faced those as well. What helped was ionic magnesium supplementation. It relaxes the stomach and esophageal sphincters so they work properly. In my case, food was staying in my stomach way too long and causing an overflow of acid which led to both conditions. It took about a week of the magnesium to really make an impact. Traditional magnesium capsules didn't work, but the ionic version did. The one I'm taking is called ReMag, Dr. Carolyn Dean (the creator) has some great info on youtube if you're interested in checking it out. Good luck to you bro, so glad you're free of this.


Wed Oct 10, 2018 1:02 am
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Joined: Sun Nov 28, 2010 12:52 pm
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Post Re: Prostatitis won't die
NZGuy wrote:
can i just ask everyone, ignorant question time... but why is surgery not an option for chronic sufferers that treatment cannot help currently?


It is an option but there may be everlasting side effects. The penis is shorter afterwards, incontinence and sexual dysfunction are always possibilites Even the doctors who do it want you to have tried all the other easier cures first. When all other possible cures have been tried and failed only then, if you are totaly disabled and unable to work or play should you consider it.


Wed Oct 10, 2018 12:09 pm
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Joined: Sun Nov 28, 2010 12:52 pm
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Post Re: Prostatitis won't die
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.[/quote]

At one of the early prostatitis workshops one patient labeled his speech: "Cancer was one of the best things that happened to me"
He went on to say that he could not shake the prostatitis symptoms; but after having the prostate removed the prostatitis symptoms were gone also


Wed Oct 10, 2018 12:27 pm
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Joined: Fri May 08, 2015 2:59 pm
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Post Re: Prostatitis won't die
Removal works for some people, but others it just makes it worse or no better. It is a drastic thing no man should consider unless his life depends on it, i.e. cancer. This is my view on the matter.


Wed Oct 10, 2018 1:24 pm
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