Help with diagnosis - bacterial prostatitis or CPPS

[willgrounds]

Hi, I would greatly appreciate anyone here helping me decide if I have CPPS or CBP and if so what treatment I should continue with.

I posted on Reddit in the r/Prostatitis forum a few days ago and some of the moderators said they didn't have enough experience to help however said Webslave had vast experience in this area and I should try and chat with him here. Hello Webslave, I would really appreciate your thoughts as I've read some of your comments on Reddit and you seem to have a lot of knowledge and expertise!

Ok, so what's wrong with me?

It’s coming up for 2 years now and I have the same set of symptoms which are as follows:

Firstly the symptoms first came on suddenly after an extremely stressful period of about 6 months where I was suffering from some general anxiety. I work on a computer and sit for 7+ hours a day. (FYI:I have a standing desk these days)

The symptoms are that 3-12 hours after ejaculation I feel a grazed type pain in my anus. It can last for a few days and up to a week on occasion. Apart from when it first came on the pain is never more than a 2 or 3 out of 10 but is irritating and noticed slightly more when sitting/walking.

If I do not ejaculate for about 2 weeks the pain is almost non existent yet this is very difficult because I’m married with a normal sex drive. There is a big correlation between frequency of ejaculation and the number of days I will continue to experience the pain. This symptom has persisted for 2 years.

My waterworks are normal, I do not need to urinate more than average and I have no pains in penis/groin/perineum/balls/abdomen or any pain on ejaculation. However saying this about 6-8 weeks into having the problem 2 years ago I did experience a few weeks of urinary frequency and feeling I had not fully emptied my bladder but my GP prescribed a 14 day course of Cipro and I also started PT at this time and the symptoms subsided. Unfortunately I didn't know which treatment fixed this.

After about 5 months of the symptoms I decided to pay to see a urologist consultant (I'm in the UK). First VB3 sample found light growth of 3 organisms: 1-Staphylococcus haemolyticus, 2-Staphylococcus epidermidis & 3-Staphylococcus capitis. The consultant said this is the reason you are having the pain. The consultant prescribed antibiotics sensitive to these bacteria. They have never shown up again and I believe they were contaminants because there was no change to my symptoms.

I asked for a second VB3 a few months later and this time the bacteria ‘Enterococcus Faecalis’ showed up. I took a round of antibiotics (Amoxicillin and Nitrofurantoin in combo) which are sensitive to this bacteria but again no change in symptoms. In my third VB3 ‘Enterococcus Faecalis’ continued to show up and again I took Amoxicillin and Levofloxacin in combo but no change to symptoms.

I should also mention I have had an MRI scan of prostate which indicated low signal bilaterally consistent with inflammation - some scarring on both the left and right side of the prostate.

During this time I also undertook PT and had internal work. Therapist said my pelvic floor was quite tight the first time she did her thing it really stung when she was manipulating me for the first time. By session 6 she said it didn’t seem particularly tight anymore and discharged me with breathing and stretching exercises to keep doing.

However consultant says it’s bacterial and impossible to fully kill off the bacteria and just have to live with it! I’m only 43! Yet I don’t really have the typical symptoms of urinary frequency building up and taking antibiotics and feeling better in the short term which a lot of his patients have with chronic bacterial prostatitis? I've also never experienced fever or feeling unwell like that.

I therefore tried Phage therapy remotely with the Eliavia phage therapy center in Georgia because they are very well respected and I had read articles that phage treatment could cure CBP. See: https://www.frontiersin.org/articles/10 ... 92614/full

I sent them 3 samples and they found:
- Fluid of prostate: Enterococcus faecalis <1x10(3) Cafu/ml
- Urine: Enterococcus faecalis <1x10(3) Cafu/ml
- Sperm: Enterococcus faecalis 1x10(6) Cafu/ml

Now, the sperm result clearly has the bacteria at a level you would consider to be an infection but in general the urine and fluid of prostate would not be considered as an infection at that level?

I did 30 days of phage treatment but my symptoms have stayed the same. They say bacteria can develop bio films which are very hard to penetrate?

The question is should I take more antibiotics and phage treatment or do I simply have CPPS?

Any help would be greatly appreciated as this is driving me mad?

[webslave]

Pain advent after stress period
Pain follows ejaculation
No ejaculation means no pain
Staph is usually a contaminant, correct

What kind of numbers for the E. faecalis?

Consultant sounds like one of the old school idiots. Uros are surgeons, never forget, and they should mostly not be allowed to treat men with UCPPS.
I don't consider any test results from the Eliavia crew to be reliable. In addition, your symptoms are not those of an infection.

Stop the antibiotics, dump the uro, go to another, better physical therapist (many women have short fingers that cannot fully explore the male pelvic musculature), and follow our tips. Get off the infection merry-go-round, it never helps anyone.

[willgrounds]

Thanks very much for replying! One other thing. I've had a pretty much zero sperm count for last 8 years but only got the symptoms I describe 2 years go. Could it be the case that I do have bacteria in my sperm but its just that that's not the cause of my symptoms?

The consultant never said what numbers the E. faecalis was in the VB3. Are you saying if they are low numbers they shouldn't be considered an issue? What should I consider as low numbers? <1x10(3) Cafu/ml

And finally what do you make of the MRI scan of prostate which indicated low signal bilaterally consistent with inflammation - some scar tissue on both the left and right side of the prostate.

[webslave]

I would ignore low numbers. Even pathogenic bacteria live in low numbers in the normal GU tract.

MRI showing inflammation is not unusual for men with UCPPS. Through nerve cross-talk, inflammation can spread from muscles to the urothelium.

[willgrounds]

Thanks webslave, appreciate your reply.

I emailed my consultant and he has provided the data on the three VB3 samples I have had done to date. As mentioned I believe the first test was contaminated and the bacteria were of insignificance. I'm interested on your thoughts on the second two test results? Thanks.

VB3 : - 11/09/2020 - Microscopy No WBC or organisms seen -
Culture 1) Light growth of Staphylococcus haemolyticus -
2) Light growth of Staphylococcus epidermidis
3) Light growth of Staphylococcus capitis

VB3: – 13/01/2021 - Culture 1) Moderate growth of Enterococcus faecalis -
2) Light growth of Pseudomonas aeruginosa

VB3: - 19/04/2021 - Culture 1) 10,000 - 100,000 organisms/ml Enterococcus faecalis –

[webslave]

The way the cultures are changing is suspicious and suggests contamination. I would go to another specialist and get PCR testing. The moderate E faecalis 10⁴ may not be significant at all, even if confirmed.

You are most likely wasting your time pursuing microbes. It just never helps. And you treated this bug without results. No point. Tell yourself the bugs are not to blame and try other approaches.

[willgrounds]

Thanks and agree – likely these symptoms are not to do with bacteria.

In terms of a PCR test is this done on a simple urine sample or is it done on the prostate fluid as per the VB3 method?

[webslave]

Usually just urine. It's so sensitive that you don't need to squeeze bugs out of their supposed "hiding places" in the prostate. If they are there, the test will pick them up. And if you treat them with the correct antibiotics and symptoms don't change (and you still have low numbers of E faec.) then your problem is not microbial.

[willgrounds]

Hi Webslave,

Been a couple of years since I spoke to you above. Followed all your advice and been pain free for over 2 years! This is the best forum for this condition by a long way so thank you for creating it!

Anyway, out of the blue on Wednesday this week I wake up at 5am with waves of extremely sharp pains going into the tip of my penis. I have more urgency to urinate and some pain in tip after urinating throughout the day. Between 4-6am I wake up with these shooting pains, feels like a knife going through the tip!!! Have no idea why I have these waves of pain in the early mornings, it's very odd.

Years ago when I had problems they were completly different, I had an ache in my bottom which this time I don't have at all.

Doctor found some white blood cells in urine sample which indicates some sort of inflammation. However because I had drunk a fair amount of water ahead of this UTI test, my urine was very diluted which might have effected the negative result.

Could also be a kidney stone as they run in family?

Stress levels are lower than they ever have been, however only thing that's different is I have been doing more cycling recently which includes a few steep hills which I know can tighten pelvic floor.

My question is does this sound like a CPPS flare up given I've been completely pain free for 2 years? I'd rather it be a UTI or kidney stone else back to CPPS treatments! For the record I'm 46.

[webslave]

Once you have UCPPS, you have it for life, and it can return for a number of reasons: stress, tensing or tense sitting (playing computer games too much), doing squats or unusual exercises, eating or drinking something that irritates the genito-urinary tract, Even too much salty food or too many caffeinated drinks (coffee, soda) or some medications or acidic food or .... there are a lot of triggers. Go through all the triggers and see if they apply to you.

https://www.ucpps.men/viewtopic.php?t=8733
https://www.ucpps.men/viewtopic.php?t=9338

[willgrounds]

Thanks Webslave, I hadn't looked at those triggers and tips for a couple of years!

For now I've stopped Coffee and fizzy drinks, ordered more Quercetin, will give cycling a miss alongside making sure to do deep breathing and relaxation to try and support calming down the pelvic floor.

Last few days have been bad with these sharp pains to the tip of my penis. I'm starting to think the Pudendal nerve may be compressed as it's like clock work every night – wake up at 5am with these sharp pains that come in waves, perhaps something to do with lying down, because it's not as bad when I'm standing.

I'm trying to find a CPPS physiotherapist to evaluate my condition but can't find any near me! I'm in the UK in Essex.

I have noticed the Wise-Anderson Protocol is now offering a home treatment programme.https://pelvicpainhelp.com/home-treatment-program/
Do you recommend this and how easy will it be for me to use the wand and find any trigger points etc. Is it advisable for a professional to show me how to do it first or can it be worked out yourself?

Any advice would be much appreciated, thanks.

[webslave]

I am no longer affiliated to Dr Wise in any way and I have not heard feedback on the home treatment yet. I think that, for most people, in-person instruction is almost essential for this sort of treatment.