CPPS after sex - need guidance.

[sopalegumens]

Hello all,

English is not my native language so I apologize for any mistakes. Also I'm on mobile so again I apologize for bad formatting.

Below is my story, I've been to 8 urologist, 3 dermatologist, 2 infectious disease specialist and 1 sexual infectious specialist. All say I'm not contagious and only 2 urologist gave me CPPS as a diagnosis, the rest had no clue.

February - I had sex 6 times in one day with a friend (not my regular partner), unprotected oral, protected vaginal and anal. Condom broke on the last time we were having sex somewhere between vaginal and anal. She also did finger my anus.

2 weeks later I get woken up with a sharp pain on my penis head that quickly evolved to constant burning sensation. Testicles started to hurt and the right one got enlarged.

My thoughts were, I'm having a UTI, went to the urologist did urine test and chlamydia and gono. All negative. Did a ecodoppler ultra sound all good just a hydrocele in the testicle. The pain went away after 1 week as so the hydrocele. Did also a fluxometery (uroflowmetry ) that I was told was normal, but in fact was flagged as "obstructed and below par". Only discovered this on my 8th urologist.

I asked the girl to get tested she was negative for HIV, hep b and c, chlamydia and gono. Her boyfriend also got tested for the same also negative. Both of them to this day have absolutely no symptoms and have had unprotected sex. Her gynecologist did told her she had a yeast infection.

March - I was out of the country when I got back returned to the urologist and got my Diflucan pill that got me rid of the yeast infection symptoms like tightened foreskin, skin peeling and the red spot.

However my penis continued to burn all day. He gave me permixon did nothing.

April - started to notice urethral tenderness, and testicular tenderness, feeling of pee trapped in the urethra and was going just a bit more often to the bathroom. Burning of the penis was always constant.

Did a new urine test - negative
Spermgram - negative
Trichomoniasis vaginalis in sperm - negative

He gave me Flomax that caused me retrograde ejaculation so I stopped.

May - 3 urologist have no clue so I switch to a new one.
By now beside the above symptoms I was have huge trouble sitting down on hard surfaces, huge testicular pain that lasted for 3 weeks, pain that radiated from the buttocks to the left leg.
Got tested again for chlamydia, gonorrhea - negative
Hiv, syphilis 1st and 2nd stage, hep b and c - negative
Urine test - negative
Ureaplasma urealyticum and Mycoplasma hominis and parvum in urine - negative.

By now my anxiety was all time high, had a panic attack, super fearful of sex and afraid of being contagious. My relationship was going down the drain. I was sleeping 2 hours a night for 2 weeks had to take a few days off work because I couldn't take it.
Started seeing a therapist she got me to sleep again with meditation and Jacobson relaxation techniques and cbt.

June - I went to my gp this time tiled her my story and my new symptoms :testicular pain was gone but the tenderness never faded away. Did a few sessions with a PT that helped the sitting down pain and the leg pain.

Got tested for mycoplasma genitalium via PCR in urine - negative
Tested urine sample - negative
Again in urine and this time a urethral swab for mycoplasma hominis and Ureaplasma urealyticum - negative
Also a urethral swab for microbiology - negative
General blood work all good minus my ferritin levels that were high - I followed with a DNA test for hemocromatose that was negative, I've stopped eating meat and ferritin came down a bit over the next 2 months, also did a ultrasound of the liver was a bit enlarged and dense.

Did a x-ray of the pelvis no broken bones.
Ultra sound of bladder and kidneys all good.
PSA blood test was good.

July - urologist doesn't know anymore so I switch new one got me tested for :

Uro genital tuberculose - negative
Cancer cells in urine - negative
And some urine test over 3 days I had polimicrobian but where below the standard colonies number so.. - negative

Also went to a dermatologist because they specialize in stds/sti says I'm good.

Burning penis always present, urethral and testicular tenderness remains, I can now sit but it has to be on a comfortable surface. Back pain is undercontrol by the pt.

August - urologist doenst know so I switch new one:

Spermgram - positive for e. Faecalis but I know it's a contaminant because I touched the inside other cup and my leucocyts were normal.
Again mycoplasma and Ureaplasma in sperm - negative
Still he gives me 20 days of levo that did nothing.
Urine test is clear.

I retest the spermgram after the antibiotics and it's clean.
Also got tested for hsv 1 and 2 via igg - negative
Trichomoniasis vaginalis in urine - negative

September/October - by now I know they don't have a clue so I go to ids doc, he says I'm fine nothing contagious as I did all the above testing.

I go to a dermatologist that specializes in sexual transmitted infections says the same thing, but the burning is driving me crazy so I made her do me a biopsy of the penis - negative for skin and cancer issues.
Gives me a cream for moisture that really helps with the burning penis sensation but that's all.

I also went to a new ids and told her about the DNA testing in Texas if she thinks it could help and if she could sign the paper and help me interpret the result she agrees so I order the urine and sperm sti. Waiting on those.

I also go to a new urologist that is amazed at my story and all the tests I did. Tells me my fluxometery is not good and doenst know why none of the 7 urologist prior to him notice this.
He thinks it's CP/CPPS does a drawing of the bladder, prostate and urethra. Explains that the prostate even if just a bit inflamed or tense, could be causing pressure on the bladder and urethra, and could explain the urethral and testicular tenderness and as well as my urge to go pee.
I tell him I never had any pus, discharge, pain or burning during or after urinating nor after orgasming.
I told him looking back before this all started I notice that I took longer to start urination than the other guys and that my stream wasn't as strong as the guy next door.
So this week I'm going to do a Trans rectal ultra sound. A new fluxometery. And we will take it from there. Maybe a cystoscopy if needed.

To sum up I did every test and more (still waiting on the DNA) and everything is negative. I've spend 8 months of my life chasing a bacteria/fungus that I cannot find.
I just find it so weird that I was fine. I mean I felt awesome prior to that sexual encounter and now I have CPPS.. My mind and anxiety and fear of being contagious doesn't let me go.

The constant burning of the penis/tip, urethral/testicular discomfort/tenderness, urine and semen dribbling makes me feel contagious and broken and helpless. I get relief when I sleep and just after waking up.
Sitting down makes everything worse. Anxiety makes it worst. Fear of getting back with my gf and infecting her is a huge trigger.

So my logical mind tells me this.

1. sex triggered this either psychological or some unknown bacteria/fungus even tho the girl and her by are fine.
2. I pushed in having sex 6 times that day and maybe messed up my pelvic floor and/or some nerve damage could explain the burning (my penis did slipped out one time and it hurt like hell)
3. I just had a yeast infection, the fear and anxiety did the rest as well as my catastrophic thinking and fear of being contagious. Along with the search for bacteria.
4. I had some indicators of urinary issues. Had the yeast. Triggered the stress and roller costed into this.

I've read Headache in the Pelvis, I'm doing the stretches in the book and from cureCPPS, I'm going to start a new PT that specializes in CPPS.

Can someone please help me make sense of this?

I just find it hard to accept I'm not contagious even tho I have every proof to back this and several docs tell me the same.. For me somehow sex that day started this.

[webslave]

Permixon and Flomax are for BPH, which you do not have.

First stop for you would be a cystoscopy to check for narrow urethra (constriction). That's my best guess.

Failing that, your uroflowmetry results could be the result of inflammation, so not very significant. The heroic sexual performance (6 times on one day) may have caused microtrauma to tissues in your genitourinary tract. Then two things could occur:

• exposure of forbidden antigens like sperm to the immune system → autoimmunity → pain.
• Or: inflammation and pain from trauma → neuronal windup → hyperalgesia/allodynia.

But let's go with urethral stricture for now (because of your suggestive history). Rigid cystoscopy can be curative.

[NeoKortex88]

It started like this for me. Basically anxiety and stress/guilt can trigger this. Read my thread „I ruined my life“. And btw I have not ruined my life. You can get over this.

I find it interesting how you write about the sex experience and then 2 weeks later wake up to pain. You must have unconsciously worried and contracted your muscles for two weeks before they „broke“.

[sopalegumens]

Hello, thank you both for your reply.

Exactly my thoughts webslave. I think that there could be a structural issue like a constriction, or something affecting the muscle that push urine and sperm.

I just did the transrectal ultrasound (TRUS) and doc said no issue with the prostate. So if this is CPPS it's non inflammatory. Will be doing a new fluxometery in 2 days, also the microgendx arrived today. Will keep this updated.

Another symptoms I forgot to add in my original post. I had pubic pain one time. Constipation 3 times (not normal for me as I poo 3 times a day). Sometimes I feel pressure under the bellybutton.

I giving this one to anxiety and not sleeping but I lost 14kg due to all this.

I just find amazing all this started after sex. I have a few questions if I may.

1. Can a urethral constriction cause the sore/tenderness in the urethra/testicles?
2. Could this started as a minor infection (swollen testicles) that got sorted out and evolved to CPPS?
3. What are my options here besides the cystoscopy? Keep playing all my cards on CPPS?
4. How sure can I be that I'm not contagious? I would like to be a father and for that I have to have unprotected sex. I did all the tests everything is negative, no issue with the girl and the boy she is with now and it's been over 8 months.

Any other feedback would be very valuable.

Again thank you both.

[webslave]

Pooing 3 times a day suggests IBS to me. You may want to explore that, because IBS is often linked to CPPS.

Anxiety-driven weight loss means you are stressing bigly over this, also called catastrophizing, which makes it all much worse and is linked to poor outcomes. You need to reframe it mentally as the essentially minor issue that it eventually will turn out to be.

1. Yes
2. Yes, but hydrocele is a separate issue that can also act as a trigger for some men, starting the neuronal windup
3. Correct. A cystoscopy can rule out stricture, so worth having, but will be quite uncomfortable for a few days afterwards
4. 100% sure. Nothing about your case suggests infection to me. You need to forget this completely.

[sopalegumens]

Hello webslave and all,

Just to update on my status. Got the results from the TRUS, prostate is fine.

Urofluxometry — Will know the results Saturday as I have a urologist appointment that day. Will update after.

Also did another spermgram now 1 month without abx, urethral swab for chlamydia and gonorrhea that I know are negative, but he also asked for microbiology that's why I went with it.

Got the prelims on the microgendx report for urine and sperm. STI only positive was a medium load of e. Faecalis on both of the samples. Still waiting on the full DNA report.

I'll push for a cystoscopy to rule out constriction like you suggested webslave, maybe my below par urofluxometry and testes swelling was due to this bacteria I dunno. Or maybe my bladder muscles are weak.

Do you think an MRI is useful? I'm afraid of Peyronie's disease due to the constant discomfort and pain on a specific area.

Thanks again for all the help.

[webslave]

The level of bacterial load is key. What was your faecalis load?

I don't think the MRI will be useful, but if you can get one free, I'd do it.

[sopalegumens]

Hello webslave, thank you for helping me.

On sperm and urine was the only bacteria they found. Both had a medium load, but I am one month after taking 20 days of levo.

On sperm it was 100% of the ngs.
On urine it was 99% of the ngs.

Still going to the pelvic pt for an assessment. And pushing the urologist for a cystoscopy and a MRI, at this point beside the bacteria I'm just afraid of Peyronie's disease, stricture or something else mechanically..

One question I was researching for alternatives to the cystoscopy, can't I do one of those where I drink some liquid with colors and then take a pee and they see if there's a constriction?

Not keen on having a camera inside my penis. Especially of I have a bacteria it could spread. Because as of now I don't have any pain in the bladder or prostate.
Just discomfort/tenderness /soreness on testes and urethra/penis..

Thank you for the guidance

[webslave]

Load as in n x 10^5 for instance

Cystoscopies don't spread infection, and Peyronie's is not caused by urethral irritation.

[sopalegumens]

Thanks for the reply.

Sperm just says medium load with 100% ngs.
Urine says medium load 5.09x10^5 with 99% ngs.

Is it bad?

[webslave]

Okay then, in your shoes I would treat the Enterococcus faecalis with the antibiotic they recommend. After all, that bacterium dominates your tests (99% and 100%), and at 5x10^5 cfu you are in the range for treatment.

I'd be very interested in your outcome. Is this asymptomatic bacteriuria connected to your other symptoms, or not? Let's find out.

[sopalegumens]

Hello webslave.

Just to give this a minor update.

Redid the urofluxometry and it's the same as the one I had done in February, obstructed and below par.

Also got the test results I did in my home country. Negative for chlamydia, gonorrhea, Ureaplasma and Mycoplasma hominis.

But.. Et voila sperm culture shows e. Faecalis again... Confirming the microgendx test. Antibiogram shows sensativity to ampicillin, amoxicillin and levofloxacin.

Also did my first pelvic floor pt session she said I had hypertonic pelvic floor, spend 40m doing internal work. Could be placebo effect or not but my testis feel better than before. Also I'm doing belly breathing.

Saturday going to urologist and Monday to the ids doctor.

Thanks for all the support webslave et al.

[webslave]

Keep going, your case is interesting

[sopalegumens]

Ok so I'm torn and don't know what to do.

Urologist gave me another 40 days of levofloxacin 500mg 1 per day. Even tho I already did 20 days to no change in my symptoms.

Ids doctor told me not to take the levofloxacin because I'd already did it and e. Faecalis could already have acquired resistance to it. Even tho the Antibiogram shows it to be sensitive to ampicillin, amoxicillin, levofloxacin.
And she gave me amoxicillin 500mg 3 times per day. For 28 days.

1. I could try the levo, it's a longer course, has better prostate penetration if e. Faecalis has already resistance I loose 40 days of this, plus all the nice side effects.
2. Amoxicillin is a new thing, never tried it, has poorer prostate penetration but could solve my issues.

I really don't know what to think and what to do.

Tomorrow I'll be doing a bladder ultrasound.

Any help?

[webslave]

1. I would not do that, it's a dangerous drug and you are not showing any results from it
2. Amoxicillin is being recommended by the MicroGen DX people, right? Even though I think the MicrogenDx method is flawed and possibly a scam, I'd do it, just to see what they come up with. Amoxicillin and clavulanate potassium (combination product) showed efficacy in a study: https://onlinelibrary.wiley.com/doi/ful ... 98.00110.x

If no change in symptoms after 2 weeks, I'd stop all antibiotics and stop seeking a solution from antimicrobials.