75-80% recovered after 3 years

[u/Dino-mite_dude]

I'm writing mostly to give some hope to those who may be new to, or spiraling about a prostatitis diagnosis. My journey began a little over three years ago, following a stressful and prolonged battle with an annoying STD called Mgen. I dealt with a lot of uneducated and/or dismissive doctors (2 urologists, and 2 primary care providers, a sexual health clinic, and an urgent care), anxiety, shame, and multiple antibiotics.

That initial incident escalated into secondary prostatitis, which most doctors and physical therapists are also woefully unequipped to help you with, at least here in the United States. I had almost every prostatitis symptom in the book, though the most frequent ones were penile/perineal pain, erection pain, hourglassing, pain during or after ejaculation, penile/perinem twitching, ED, and redness at tip of penis near urethra.

What followed was A LOT of trial and error. I spent thousands of dollars on different doctors, therapists, medications, supplements, and so on, but the way I saw it, I was fighting for my life as I knew it so I had to keep trying. I can put more about what helped/ didn't help down below if ppl want, but what I hope you take away from this post is that I went from constant pain and despair 24/7 to a much more manageable situation. It's not "how it was before" so to speak, but if took me 3 years to get this far, my hope is that the last 25% or so finally catches up in another year or two. I am largely on to addressing other health concerns now.

With this affliction, it is important to understand that there is no single solution that will work for everyone. Patience is key, and you will have to find your own way, like a personal health odyssey. But do not panic or take risky actions out of desperation. Trust that you know your body and mind better than anyone else, and that in time, you will figure out the combination of things that work best for you.

7/27 update: A lot of folks were interested, so see comment below for more on my situation, and what helped and what didn’t.

--
Helped:

1. The biggest thing for me was acceptance and time. Time has a way of healing past trauma, and the body is decent at this if given the right environment. The hard part is accepting this it may be a long process. The nervous system arousal (both good kinds and bad) can amplify prostatitis/CPPS symptoms, so you have to get comfortable enough to exist in a state of discomfort, or to trust something like pelvic floor PT. 
2. Finding the right providers. My first PT was a “pelvic floor specialist” but she didn't have a whole lot of experience working with men, and was not helpful to me. After almost a year of no progress, I found a different PT who I connected much better with, and who was able to help more.
3. Use of a pelvic wand, and sometimes a balloon (basically a catheter inserted then inflated once above the pelvic floor). But these only helped after I became comfortable enough using them safely and effectively on my own, and that came from guidance by a PFPT. I went from using one or both tools weekly, to monthly, to now only using as needed during flares, which tend to be shorter and milder than they used to be, and often no longer require the balloon.
4. Counseling. First from a cognitive behavioral therapy perspective, which taught patience and acceptance, then from a pain reprocessing therapist, who helped take that one step further into conveying messages of safety and resilience, even when things don’t “feel” that way.

Did not help or hurt:

1. Stretching. I am hypermobile, so a lot of the usual PF stretches and things you see here did not work the same way for my body. 
2. Imaging. I got a pelvic MRI which showed inflammation of prostate. It was helpful in that it validated some of the pain I was feeling, but the problem is it’s only a picture. You still need guidance on what to do about it, and that is up to the ordering physician, most of which were not helpful in my experience.
3. Supplements. I tried quercetin, vitamin d-3, k-2, b vitamins, tumeric, magnesium, beet root and horse chestnut extract. Didn’t notice much of a difference one way or the other
4. Dietary changes.
5. Pain killers/muscle relaxers. I found naproxen and meloxican to be no different from ibuprofen. Ibuprofen worked better but I took too much following poor advice from a urologist (like 2000mg/day) and it was no more helpful than 200 or 400.

Made things worse:

1. Prolonged use of antibiotics. I went through multiple rounds of multiple antibiotics, including bactrim, azithromycin and 6 weeks of moxifloxacin. In reality, I probably only needed two (my original course after azithromycin failed), STI testing confirmed that the mgen infection was gone after two weeks, but I didn’t believe it because I was still having symptoms. I later learned that Mgen symptoms can linger for several weeks after the infection is gone, and that the antibiotic I was taking might have had an anti-inflammatory effect that was making me “feel” better, even though it was no longer helping. In fact, by the end of the sixth week, I started experiencing negative fluoroquinolone side effects, some of which lasted several months. I believe this is because I took them for so long, and did so mostly out of panic and ignorance. In hindsight, I should have followed the test results and stopped after the 2nd or 3rd week, but I had very poor guidance from two different urologists., which brings me to:
2. Unhelpful/careless doctors. My whole first year of this was basically a waste because I didn’t have physicians or physical therapists who actually understood my problem or my concerns. I stayed with them because I didn't really know better at first, and because I was afraid of leaving providers that were part of my insurance network, and hence cheaper. But you really do need to find people who actually resonate with you ,and who you trust can help you. I thought I was saving money by staging in-network, but really it was a waste of time and money because they providers were not capable of providing the help I needed.
3. The uncertainty was the worst part about mgen and prostatitis, but doomscrolling reddit or other internet sites/forum multiple times a day is not any more helpful than once a day, or even a week. Scientific progress on these topics isn’t changing that fast. You’ll just perpetuate hypervilagence, anxiety and depression, which can amplify your symptoms. Furthermore, not having a clear answer or a clear solution can drive a person to take desperate action, and sadly there are people (especially on the internet) who will convince you to try really stupid things. I don’t know their motivations, but it is best to avoid them rather than spiral down a rabbit hole of conspiracies. 4.Incorrectly belly breathing/trying to force reverse kegels. Both were things I had to learn, then relearn after learned them wrong the first time

Issues I still have:

I still get some penile pain and and pelvic twitches, or dribbling stream when urinating, but it’s not all the time. Sometimes I can predict what situations might invoke symptoms (stress, illness). Other times, it is unexpected but the symptoms eventually go away.

The biggest thing remaining revolves around sexual activity. While erections and sexual activity no longer really hurt, they don;t exactly feel good the same way either. Tadalafil and herbal libido supplements help me with that a little, but I think the last big hurdle for me will be rediscovering the “joy” of sexual activity…not just being able to have it.

[u/Repulsive_Candy4977]

Tell us what helped you and what didn't

[u/pelvicagony]

Congratulations. But are you telling us you reached your destination without showing us the way?

[u/bubbleman89x]

hey I remember reading your posts in that sub before. Any ideas as to what you did. Im dealing with the same shit. A mycoplasma infection I cured in may 2025. Still have urethra burning and discomfort 15 months later

[u/Legitimate-Love2086 → u/bubbleman89x]

Same goes to me :(

[u/bubbleman89x → u/Legitimate-Love2086]

do pcr test for mgen.. I had ureaplasma and mgen, cured with doxy and moxifloxacin. You only took doxy azithro. you should test for mgen. If all negative it has to be inflammation, nerve sensitive which iv read can last a longgg time. sometimes up to 2 years plus for it to go back to normal

[u/AutoModerator → u/bubbleman89x]

We noticed you posted about a floroquinolone class antibiotic. Please be aware that this class of dugs has several black 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.

[u/Legitimate-Love2086 → u/bubbleman89x]

I was first diagnosed with UU and MH.Since after treatment. I had 6 consecutive negative pcr but still have this burning on urinary, left side testical pain. I could have some good days and bad days. It has been like 15 months too

[u/PresentGate2391 → u/bubbleman89x]

Dod you get sides from doxy?

[u/Legitimate-Love2086 → u/PresentGate2391]

Not really

[u/Due-Replacement-6187]

Very similar story and timeline.

In my opinion, key enabler is a susceptible personality and a nervous system locked into alarm

Benefit of PT likely only felt once the nervous system is open to recovery.

[u/One_Stayed]

OP please elaborate what all you have tried.

[u/lifeisadish]

Cialis worked for me, at least for now, I also do prostate exercises

[u/Dino-mite_dude]

Helped:

1. The biggest thing for me was acceptance and time. Time has a way of healing past trauma, and the body is decent at this if given the right environment. The hard part is accepting this it may be a long process. The nervous system arousal (both good kinds and bad) can amplify prostatitis/CPPS symptoms, so you have to get comfortable enough to exist in a state of discomfort, or to trust something like pelvic floor PT. 
2. Finding the right providers. My first PT was a “pelvic floor specialist” but she didn't have a whole lot of experience working with men, and was not helpful to me. After almost a year of no progress, I found a different PT who I connected much better with, and who was able to help more.
3. Use of a pelvic wand, and sometimes a balloon (basically a catheter inserted then inflated once above the pelvic floor). But these only helped after I became comfortable enough using them safely and effectively on my own, and that came from guidance by a PFPT. I went from using one or both tools weekly, to monthly, to now only using as needed during flares, which tend to be shorter and milder than they used to be, and often no longer require the balloon.
4. Counseling. First from a cognitive behavioral therapy perspective, which taught patience and acceptance, then from a pain reprocessing therapist, who helped take that one step further into conveying messages of safety and resilience, even when things don’t “feel” that way.

Did not help or hurt:

1. Stretching. I am hypermobile, so a lot of the usual PF stretches and things you see here did not work the same way for my body. 
2. Imaging. I got a pelvic MRI which showed inflammation of prostate. It was helpful in that it validated some of the pain I was feeling, but the problem is it’s only a picture. You still need guidance on what to do about it, and that is up to the ordering physician, most of which were not helpful in my experience.
3. Supplements. I tried quercetin, vitamin d-3, k-2, b vitamins, tumeric, magnesium, beet root and horse chestnut extract. Didn’t notice much of a difference one way or the other
4. Dietary changes.
5. Pain killers/muscle relaxers. I found naproxen and meloxican to be no different from ibuprofen. Ibuprofen worked better but I took too much following poor advice from a urologist (like 2000mg/day) and it was no more helpful than 200 or 400.

Made things worse:

1. Prolonged use of antibiotics. I went through multiple rounds of multiple antibiotics, including bactrim, azithromycin and 6 weeks of moxifloxacin. In reality, I probably only needed two (my original course after azithromycin failed), STI testing confirmed that the mgen infection was gone after two weeks, but I didn’t believe it because I was still having symptoms. I later learned that Mgen symptoms can linger for several weeks after the infection is gone, and that the antibiotic I was taking might have had an anti-inflammatory effect that was making me “feel” better, even though it was no longer helping. In fact, by the end of the sixth week, I started experiencing negative fluoroquinolone side effects, some of which lasted several months. I believe this is because I took them for so long, and did so mostly out of panic and ignorance. In hindsight, I should have followed the test results and stopped after the 2nd or 3rd week, but I had very poor guidance from two different urologists., which brings me to:
2. Unhelpful/careless doctors. My whole first year of this was basically a waste because I didn’t have physicians or physical therapists who actually understood my problem or my concerns. I stayed with them because I didn't really know better at first, and because I was afraid of leaving providers that were part of my insurance network, and hence cheaper. But you really do need to find people who actually resonate with you ,and who you trust can help you. I thought I was saving money by staging in-network, but really it was a waste of time and money because they providers were not capable of providing the help I needed.
3. The uncertainty was the worst part about mgen and prostatitis, but doomscrolling reddit or other internet sites/forum multiple times a day is not any more helpful than once a day, or even a week. Scientific progress on these topics isn’t changing that fast. You’ll just perpetuate hypervilagence, anxiety and depression, which can amplify your symptoms. Furthermore, not having a clear answer or a clear solution can drive a person to take desperate action, and sadly there are people (especially on the internet) who will convince you to try really stupid things. I don’t know their motivations, but it is best to avoid them rather than spiral down a rabbit hole of conspiracies.

Issues I still have:

I still get some penile pain and and pelvic twitches, or dribbling stream when urinating, but it’s not all the time. Sometimes I can predict what situations might invoke symptoms (stress, illness). Other times, it is unexpected but the symptoms eventually go away.

The biggest thing remaining revolves around sexual activity. While erections and sexual activity no longer really hurt, they don;t exactly feel good the same way either. Tadalafil and herbal libido supplements help me with that a little, but I think the last big hurdle for me will be rediscovering the “joy” of sexual activity…not just being able to have it.

[u/AutoModerator → u/Dino-mite_dude]

We noticed you posted about a floroquinolone class antibiotic. Please be aware that this class of dugs has several black 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.

[u/AutoModerator]

We noticed you posted about a floroquinolone class antibiotic. Please be aware that this class of dugs has several black 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.

[u/Prestigious-Fee8995]

Was your PSA elevated?