Chronic Urethritis and Pelvic Pain for 5+ years, no explanation?

[Jane470]

I have had chronic urethritis and pelvic pain syndrome for 5+ years. I have been tested for everything on earth and it's always negative. I was thinking that it could be a low grade infection after reading this "certain forms of bacteria, parasites and viruses form communities that protect themselves with a biofilm which is like a bio-glue forcefield. - These types of biofilm communities can form in the gastrointestinal tract, urinary tract, respiratory system and sex organs. The biofilm makes these types of pathogens extremely hard to kill and can lead to chronic symptoms without any relief from traditional medical treatments." (Book source: Chronic Urethritis by Thomas B. Smith, p. 10-11).

Could this be a low grade infection from this sort of phenomenon or could it be another unknown cause that I'm not aware of yet? If so what other kind of conditions can cause these symptoms?

Anything helps. Thanks.

[auntiejessi]

Have you ever heard of chronic pelvic pain syndrome? It's also called chronic prostatitis, but not nearly as often anymore because it encompasses a lot of other things now.

There is also something called urethral syndrome that might apply better.

https://www.healthline.com/health/urethritis-chronic

https://academic.oup.com/cid/article/61/suppl_8/S763/345076

Also, have you been tested for mycoplasma genitalium? https://www.webmd.com/sexual-conditions/mycoplasma-genitalium It's a newer STD, and a lot of docs don't know about it. If you're in the US, the FDA recently approved a test for it.

I mean, I guess it's possible that you have what the book describes. I'd imagine that even if they are hard to kill, the pathogen wouldn't be hard to find in your urine. Have you been under the care of a urologist? You've had the ultrasound, cystoscopy? They've sent your urine out for culture?

[Jane470]

Yea Chronic Pelvic Pain Syndrome would probably be what I have. I guess the primary cause is the main issue. The book goes into how finding the problem is the trick to finding the right treatment. I am still working my way through it to hopefully narrow down 1-3 conditions and then see what the treatment options are for it. But antibiotics don't seem to do anything and I've had all of them. I also found this below which could be useful:

"Studies have shown that some cases of Interstitial Cystitis (IC) may be caused by an infection called the Polyomavirus. Although this is not well researched there have been studies that have shown patients with IC symptoms who have tested positive for the virus. Testing for the Polyomavirus was conducted by Polymerase Chain Reaction (PCR) testing in a controlled study. Further research is needed for treatment of this virus and it is advised that the reader conducts their own private study as data is currently limited on the topic."

Source: https://modernmedicalnews.medium.com/interstitial-cystitis-painful-bladder-syndrome-and-polyomavirus-1a19e9cbb37f

Thanks.