Ben's case - all input welcome!

[bensy_boy]

Hi gents

Thought I would take the plunge and see if anyone might be able to help with my issue. All thoughts are very welcome!

It's a long story but will try to keep it brief! So:

1. Had a bout of epididymitis after having unprotected oral abroad in 2016. It went untreated for four weeks (doctors thought it was my varicocele....) before I was finally prescribed with Doxycycline. After 5 days of that, it still hadn't resolved so I was put on Ciprofloxacin simultaneously (I later found out that these can cancel each other out and increase resistance but more on that later). In any case, the epididymitis went away so I didn't think any more of it.
2. Fast forward a year to 2017. Was hit with what seemed to be acute prostatitis. Very fatigued, significant pelvic pain, flank pain, prostate crazy tender on DRE.
3. Was prescribed more Cipro and then a high dose of Levofloxacin (for a total of 5-ish weeks), together with Ibuprofen.
4. In short, it didn't work and I just got stuck with an absolute barrage of side effects.
5. Annoyingly, cultures weren't tested until after the 5 weeks of antibiotics, at which point the "acute-ness" had died down but they still found "Streptococcus Anginosus" and "Prevotella Bivia".
6. The Strep was found to be resistant to doxycycline and Cipro/levo. No resistance test possible for Prevotella Bivia.
7. I was prescribed more (different) antibiotics but was suffering so much at that time from the side effects of the Cipro and Levofloxacin that I couldn't face them (and so didn't take them). Maybe that was the wrong decision, who knows.
8. Over the next year or so, the significant pain just became more of an annoyance. Every now and again had some smelly wee.
9. Where I'm at now (2019): don't really have much if any prostate pain most of the time. Have developed slow urine flow - particularly at night; and there's obviously now some urinary reflux going on (usually have some dull pain or tingling in balls after I pee and at night don't pee out anywhere near as much as I drink). What is/was a prostate issue seems to spread out to balls and bladder. Whenever I lay down for bed, I can feel the blood flow pulsating to prostate area.
10. I get flare-ups every 6-9 months, particularly hitting the epididymis (feels like it did in 2016 when that happens).
11. Got so fed up with it recently that I went for some more thorough tests. All STIs were ruled out but there is significant inflammation (e.g. "Interleukin-8" in sperm was at over 20,000 pg/ml. Apparently the norm is 1,000...). Leukocytes in the EPS. PSA was fine (0.63 ng/ml). Uric acid high.
12. Obviously to get the EPS, the Doc did a DRE... had flank pain again that very same evening (something spreading out to kidneys?)
13. One final bit of information: from what I've been able to read into it, Prevotella Bivia seems to be very closely linked to pelvic inflammatory disease and inflammation generally. Strep Anginosus seems to be sometimes commensal, sometimes pathogenic.
14. Which comes to my question: where to from here? Do I try antibiotics again (obviously a different class to Cipro/Levo!)? I'm pretty reluctant after my last experience but on the other hand I do want to get rid of this thing.
15. I should say that I've tried a few different things: Quercetin, Pollstimol, Granufink. None of them seem to do very much. But I must admit that I haven't really tried them for any length of time.
16. It's a bit of a weird one as there's obviously quite a lot of inflammation going on. I don't have this "golf ball" feeling that people describe - so I'm wondering if it's less of a muscular problem and more of an inflammatory (infectious?!) one. To my mind, it seems possible that my immune system is (over?)-reacting, possibly to the bacteria that were identified in the tests. But really, who knows. I'm a bit lost with it, to be honest.

Would be great to hear your thoughts.

Thanks a lot,

Ben

[webslave]

1. Probably unrelated, and probably not as a result of oral sex
2. CPPS often begins with what looks like acute prostatitis
3. Standard useless treatment
4. Par for the course
5. S. Anginosus is a commensal, part of the normal human bacteria flora, and only rarely infects liver and brain. Prevotella can cause pelvic inflammatory disease in women.
6. Prevotella usually succumbs to metronidazole https://pubmed.ncbi.nlm.nih.gov/29860038
7. -
8. Significant pain usually indicates CPPS, not bacterial prostatitis (just FYI)
9. Don't self-diagnose. Urinary reflux needs urodynamics to diagnose and involves the ureters and kidneys (intra-prostatic urinary reflux is also not self-diagnosable); less urine flow at night is normal due to vasopressin, etc.
10. -
11. Chemokines and pus cells indicate inflammation. How high was uric acid?
12. DRE causing flank pain is probably muscular ► trigger points. DRE would not affect kidney
13. Correct, but not necessarily significant. P. bivia, while it can cause abscesses and infections, is part of the normal flora. https://www.ncbi.nlm.nih.gov/books/NBK8438/
14. To set your mind at ease about P. bivia, a course of metronidazole could be tried, but only during the next pain flare ("epididimytis"). If there is no difference, you can pretty much forget about it
15. You really should start exploring the many things we talk about here, rather than keep going down the rabbit hole of infection.
16. Not everyone has a golf-ball feeling (I never did, for instance). Inflammation is common in CPPS.

Welcome to the forum, you have lots of reading ahead.

[bensy_boy]

Hi webslave,

Thanks a lot for the input - fantastic help and v reassuring. To answer your question, uric acid was at 8 mg/dl; seems to have been on the up since 2017 when I look back at the blood tests (was 6.3 then). Anything at all interesting about that?!

I'm trying not to go down the rabbit hole of infection, particularly as I am so reluctant to take any more antibiotics. Will carry on with the PollStimol and relax / stretches, and see how it goes.

Just two more quick questions if I may:

1. IF it comes to it, I've read Clindamycin could be a possible last resort / knock-out for the P. bivia (to put my mind at ease...), but I'm really not keen given the impact on gut bacteria as a whole. Any experience or thoughts on that?
2. Assuming the inflammation is rather neuro-muscular in origin (which seems more likely), I'm a bit confused why my flow is always so much worse at night. I also get this weird tightness in my balls during / after a BM. Do either of those things make any sense to you?

Thanks again,

Ben

[webslave]

To answer your question, uric acid was at 8 mg/dl; seems to have been on the up since 2017 when I look back at the blood tests (was 6.3 then). Anything at all interesting about that?!

Not really. 3.4-7.0 mg is the normal range, so just outside. Gout? Try a course of allopurinol. Other causes are rich foods, being overweight, having diabetes, taking certain diuretics (sometimes called water pills) and drinking too much alcohol. Does this fit you?

Other answers to questions:

1. I wouldn't do it. Some possible serious side effects and not enough evidence of infection
2. BMs often goose pain in men with CPPS. It's often mentioned. Passage of feces past tender area? Straining of pelvic muscles?

[bensy_boy]

Thanks webslave. Partly the reason for the question was that this didn't fit me at all. I'm 62kg and barely drink. At least before this / the Cipro side effects, I was the picture of good health...

Other answers:

1. Thanks - yeah, I'm not keen. Will put on the back-burner.
2. Yeah I guess maybe muscle-related. It's a weird sort of tightness in the balls afterwards. Who knows. Without wanting to abuse your kindness: have you had experience of the weak urine flow at night issue?

Thanks again, advice is much appreciated! I was flipping out about this when it first started. Am not anymore but wish I'd found this forum two years ago...

Ben

[webslave]

You're not supposed to have a strong urine flow at night; that's why there is a hormone called vasopressin to suppress urination at night.

Back to high uric acid, which can be caused by a purine-rich diet, check what you're eating. Avoid too much animal protein:

High-Purine Foods Include:

Alcoholic beverages (all types)
Some fish, seafood and shellfish, including anchovies, sardines, herring, mussels, codfish, scallops, trout and haddock
Some meats, such as bacon, turkey, veal, venison and organ meats like liver

Moderate Purine Foods Include:

Meats, such as beef, chicken, duck, pork and ham
Shellfish, such as crab, lobster, oysters and shrimp

[MajorSky1]

Hi Ben,
I'm a cured CPPS veteran.

So I agree with everything webslave has laid out for you. Strep is no concern. It hangs out in small amounts in a large percentage of the female population's vaginas and doesn't ever proliferate to a problem level unless there is a immune system issue (which you don't have).

The inflammation you are experiencing is probably mostly from tight MF tissues, and probably even some chronic tightness in smaller muscles. Have you noticed a slightly more yellow tint to your semen? If not, great! If so - doesn't matter. It won't hurt anything, and is simply a telltale of a little bit of inflammation.

You are obviously thorough in your testing and evaluations with doctors.

At this point, just keep up with the diet that webslave has set out for you.

A couple things I'd add:

1. Coconut water (high in magnesium)
2. Zyflamend (all natural anti-inflammatory supplement)
3. Blueberries, blackberries, and other dark blue/purple fruits.
4. Cut back on fried foods, excessive breads/pastas, sugary foods.
5. Get plenty of B vitamin complex (may cause mild urethral irritation - but not always).
6. Zinc.
7. Vitamin D3 supplement.
8. Cut back to one booze drink a week or less.
9. Stay hydrated.
10. Exercise is essential. Doesn't have to be hyper-aerobic. Walking a mile or three every day is excellent, and helps blood flow, and so many other homeostatic systems to function more efficiently.

Also, if you're having post-BM pain, try doing a crossword, or sudoku while your on the throne. Sounds silly, but it works to get your mind thinking of something else besides the fear of having pain after going. It worked for me! Takes a month or two to train the fear away.
Good luck!
B.

[ChgoGuy]

Get plenty of B vitamin complex (may cause mild urethral irritation - but not always).

I got into a disagreement months ago in another forum over this. I had expressed that B Vitamins caused me irritation, and this guy rambled on how he went to college and studied biology, and it may also be related to his occupation today, and basically accused me of making it up that B Vitamins could do that. I was pretty nice about it, but he was acting like an ass. The guy was dealing with his CPPS issues for only 3 months, and acted like a know it all. Here this guy wanted to argue with guys suffering for years with this, and he was a know it all newbie. I blocked the guy. You want help? Then listen to what others have experienced. If not, figure it out yourself. This was the one and only time I refused to be involved with somebody dealing with this. If I remember correctly, he also was hung up on the cause being bacterial. What a shame!

[bensy_boy]

Hi guys, I've been off the forum for a little while but currently suffering a flare-up so just checking in and wanted to say thanks very much for all your advice. It's really helpful and appreciate you guys giving up your time! Particularly good to hear that you're a cured veteran, MajorSky1!

All the best,

Ben

[bensy_boy]

Hi gents,

Just checking in again, mainly to report a bit of improvement - the last flare (recently) was pretty minimal; I don't really have day-to-day pain any more; and ejaculation is pretty much pain-free (albeit maybe a bit less "powerful" than it used to be). So good news there.

Otherwise: still have slow urine flow, dribbling during a flare-up, and - what I always notice when I lie down at night - blood pumping furiously to the area. So I guess the little guy's still inflamed.

Which comes to one question I have. I'm not really doing much about it apart from trying to ignore it, eat and exercise well, stretch. I take the odd Pollstimol (pollen extract). Otherwise, I'm staying well clear of doctors and getting on with my life.

The only question I had was: should I be doing more? I took a look back at the report of my last set of tests, and saw that prostate volume e.g. is 38ml (large? I'm 32). Significant inflammation in sperm. Don't want to end up with more problems down the line (or with a massive prostate ) but at the same time, I'm not sure if anything else will really help.

What do you think?

All the best,

Ben

[webslave]

Normal prostate size for an adult male is 15cc to 30cc. Inflammation can cause a temporary increase. Your urine is too dark, drink more water. Seriously, get 2-3 liters a day down. Concentrated urine can hurt.

[bensy_boy]

Thanks Webslave. I should clarify: "Brown wee" in signature block was only during onset acute phase. Normal straw colour resumed a long time ago!

When you say inflammation can cause a temporary increase, I guess the question is - is there any more I should be doing to reduce the inflammation? It's been going on (more or less) for 3 years... I guess the answer is no so I'm just looking for reassurance

[webslave]

Are you following the IC diet, have you had a trial of gluten free eating, are you using quercetin products?