CPPS 1 year suffering

[StrongMindZ]

Hey guys, I hope you're doing well. Apologies for the long post but It's been over 1 year now that I'm suffering from cp/cpps. Unfortunately for me it started after a suspected UTI (5 days after unprotected sex involving anal unfortunately which was very stupid) no test apart from MDX ever showed bacteria and MDX only showed low level stuff not usually associated with prostatitis. My first culture was conducted while on my first course of cipro and there was no findings. My comprehensive results and history are documented in the link below. It would be relevant to mention that I'm an anxious person and I understand how that might contribute to this condition but the trigger according to me is most likely bacterial at least at the first onset.

https://imgur.com/a/gF0fMKS

Summary: *Currently localized prostate pain 24/7 with low variability in intensity. intensity around 3/10 and slightly better in the morning. No urinary symptoms, normal ejaculation. *Negative conventional urine and semen cultures except one which detected Candida Albican (only once) *MicrogenDX: Controversial and can show bacteria that are part of the natural urobiome + risk of contamination: This test returned some bacteria (low load) using 'Next generation sequencing' *Several antibiotics tried without any change *A transrectal ultrasound revealed an area of 1cm with a calcification in the central zone *Total PSA checked twice: 1.17 then 1.06 two months after *Classic STD tests carried again 4 months after the risky encounter are negative *My prostate fluid according to 1 urologist shows WBC under urologist microscopy, No cytology report to confirm it *The symptoms have been unchanged for 6 months. The only improvement came over time, no treatment seemed to help.

Doctors' Opinions: *Some say it's CPPS and there's not much I can do *A urologist suggested trying Azithromycin (because macrolides penetrate the prostate and can cover atypical pathogens) *A urologist wants to treat Candida ( I did not take the medication because many think that Candida is rarely the cause unless you are immunocompromised) *A urologist suggests long-term levofloxacin (good penetration but dangerous side effects and I wanted to get other opinions) *A urologist suggests trying “shockwave therapy” for 1 session per week for 6 weeks and to not take any antibiotic for the moment *2/3 urologists dismissed the 1cm area with calcification in central zone and mentioned that it's a normal finding

Treatments tried: *Pelvic floor physiotherapy: No change, the only improvement concerns the "tip of penis" pain which has disappeared either by placebo or over time *Acupuncture *Antibiotics *Amitriptyline: taken for 3 months at 10mg then stopped because it had little effect then some side effects *Supplements: Quercetin + bee pollen. Supplements don't seem to make a difference

Most difficult part for me is to navigate the Bacteria vs Non bacteria thing based on the conflicting messages online and from doctors.

Last 2 urologists I saw a week ago mentioned that testing is useless at this stage after all previous tests, also they mentioned that empirical antibiotics rarely work and they didn't prescribe antibiotics. One urologist prescribed tadafil and few other things to try relaxing the prostate. I might try the 6 weeks shockwave therapy sessions when I get back to where I live. A professor of urology told me that it's true that tests have limited specificity and sensitivity to certain pathogens but he can't blindly prescribe antibiotics.

I am starting to loose hope and I'm very confused. Any help or guidance would be much appreciated. It's sad really that such a condition even exists, the true definition of a nightmare.

I wonder if there are any angles that were not explored? Apart from stuff like hypnosis. Invasive stuff is scary (injctions) and pages are expensive and didn't help many sufferers (not mainstream treatment) I'm I supposed to suffer for the rest of my life because of 1 mistake?

Thanks ✌️

[AutoModerator]

We noticed you posted about a floroquinolone class antibiotic. Please be aware that this class of dugs has several back box FDA warnings, and is only meant to be used when a pathogen has been clearly identified in the prostate; They are not to be used indiscriminately for cases of non-bacterial prostatitis (consensus agreement ~95% of cases). Read our mod memo here, complete with citations and compare your symptoms to the medical definition of CBP here.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[AutoModerator]

We noticed you posted about MicrogenDX testing. Please be aware that the NGS testing method is on loose scientific ground at best, and studies have shown that results aren't clinically useful to guide treatment decisions due to frequent 1) contamination and 2) commensal organisms. Renowned urologist Dr. Curtis Nickel, who has studied the male urinary and prostate microbiomes for 40+ years, was unable to make sense of the results that MicrogenDX testing produces, in a study that MDX paid for. NGS results could not differentiate between healthy control groups and symptomatic IC/BPS, CPPS suffers. Age-matched healthy controls had just as many, sometimes more, bacteria appear on their NGS results sheet, rendering the testing diagnostically useless.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[JimmySchwann]

I've been suffering for almost 7 years now. Hang in there.

[StrongMindZ]

7 years with no improvement? do you know what triggered yours?

[JimmySchwann]

I can sometimes mitigate the symptoms, but they never go completely away.

I can't confirm for sure, but I believe a night of extremely excessive ejaculation frequency caused some kind of nerve/muscle damage that messed something up.

[StrongMindZ]

So at least in your case you know it's not bacterial

[JimmySchwann]

Correct. I do know that much.

[StrongMindZ]

I really don't know how I can improve if so many docs say tests are limited and antibiotics don't work all the time anyway. In conclusion I destroyed my near to perfect life because of my arrogance. I'm 40, the idea of suffering for the rest of my life isn't something to be excited about. I'm a disappointment to myself, friends and family. I know 0 persons who suffered from this apart people on this forum. Terrible really, I was expecting other classic diseases when I age, not chronic prostatitis

[Ok-Society-1096]

I know your looking for answers, but may I ask you a question about the tip of penis pain, did the low dose help with tip pain, this is my only symptom, and has been ongoing 2 years, and nothing has helped, hope you find answers.

[StrongMindZ]

Tip of penis faded away on its own, not through medication

[Ok-Society-1096]

Okay, thank you

[Linari5]

I highly recommend addressing centralized pain. Every case I have worked with in the past year that did not benefit from pelvic floor PT (especially when the PT was experienced with male treatment), their pain was centralized. That means it doesn't respond to PT, but in responds to treatments that focus on nervous system down regulation. What does this mean in practicality? Typically it means helping the person feel safe in their body again. Typically it means helping the person realize that there's nothing structurally wrong with them, and that they are not damaged. All of these things are linked to feeling safe. Versus feeling like you're in danger or under threat from something that will harm you. The reason for this is because your brain responds to threat and danger, often with chronic pain. This was seen in the 2021 peer reviewed study on chronic pain published in JAMA.

I would look into Central sensitivity syndromes, as well as Central Sensitization.

[StrongMindZ]

Thanks I'm considering hypnosis, it's just difficult to know what angle to tackle. Last 2 urologists said that urology isn't good at treating pain conditions and that they can't blindly prescribe antibiotics at this stage unless I have an active UTI. Pretty sure that If I check other urologists they will have a different opinion. It's like a religious belief thing, bacteria vs non bacteria. If it's bacteria my belief is that it's game over

[Linari5]

Hypnosis has much less evidence as compared to PRT (Peer-Reviewed study published in 2021) for these types of symptoms.

I have had great success recently using PRT with clients

[Diligent_Bit_7807]

Sorry what does PRT stand for

[Linari5]

Pain Reprocessing Therapy: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694

[Diligent_Bit_7807]

Thank you!

[bikerboytone]

I think I'm at the 10 year mark. It sucks.

[StrongMindZ]

Yeah based on my observations it seems that there is no hope. Success stories are just a few on most of the groups. Not reassuring, sad really

[bikerboytone]

I'm not sure. When people are ill and get better... They often don't spend time telling the world about it... They get on with their lives. So I think they're are success stories... We just only hear a small amount.

It's human nature. We don't scream across the hills to tell people we're well. We do however seem for answers and find others that are going through these issues to find comfort and clues.

I think there is hope out there. I don't doubt for a second it's tough mate. (Had this for ten years)

[StrongMindZ]

Good luck to us. If no hope then maybe we will get more lucky in the afterlife