About urethral symptoms

[Balenul]

Case history here: https://ucpps.men/viewtopic.php?t=9488

First off all ty Webslave for unlocking my account. I had a very bad day back then and I said some things when I was angry. Sadly pain can modelate us.

So good to see you all again and I want to update you. My symptoms are prolly from different origins and are very bad and constant in many days now again. I saw many pelvic pain specialists in other countries and all have different ideas. This summer was mixed, I had some good hours with almost no urethral constant urge to urinate and some nights with very good sleep but I also had horrible periods with 24 / 7 symptoms. My case is not the simple, rectal prolapse surgery, pituitary apoplexy, bladder neck obstruction (still did not had surgery since doctors have different opinion about it).

TENS on my tibia helped me very much for few weeks. But for me the biggest help was gabapentin until it stopped working after 10 months (this was last year) and this makes me thing somehow my pain is mainly neuropathic (or at least used to be) but this summer when I had a flare I took 250 mg levofloxacin for few days and things improved drastically.

So prolly my sensations are from prostate / bladder inflammations, pelvic floor problems affecting nerves and other pelvic structures, the bladder neck obstruction have a role also for sure etc. My abdominal scars create trigger points etc...

I am still optimistic since this year like I said my summer was mixed even if last weeks are difficult.

Right now I have big sensations constantly that interfere with my life badly and the only thing that helps me is levofloxacin ... is really allowing me to have a decent period if I take it for few days but after things get bad again. I know is a poison but sadly I have to use it sometime.

I try to relax as much as I can and be calm, I try diffetent supplements and do stretches and still use the tibial machine.

My bacterial tests are still clear but I never had a real 4 glass test (the best one was 2 glasses). I don t think is a bacterial infection but what amaze me is how good levofloxacine is diminishing my strong urethral pressure. I know is not a fix and I can t explain why is so effective in this period when neuropathic pills stop working. I guess right now my predominant problem is the bladder / prostate inflammation but I can t find supplements to be effective for now and I know I can t take levofloxacine forever (I got it for more than a month in last 6 months but like I said it had a excellent effect when nothing else worked).

So I don t even know what to say about this so called big chronic pelvic pain specialists... all have other ideas, one is fully convinced my urethral symptoms are from painful bladder.... other like I said totally other reasons.

Sadly I can't find any supplement to do what levo do right now and my access for pelvic floor therapy in Romania is non existing.

Take care.

[LivingRoomFanatic]

What about taladafil for pain? (also called Cialis)…

https://journals.sagepub.com/doi/10.117 ... 7218808677

I use Duloextine for anxiety and pain. Supplements I use Quercetin, Graminex and PEA. I have little to no pain.

In terms of Taladafil the conclusion was as follows…

Conclusion
Though many drugs have been proposed for IIIB CP/CPPS, no effective treatment has been described. In our experience, a daily intake of 5 mg tadalafil guarantees a significant reduction in pain and improvement in quality of life for patients. Although only a small number of patients were enrolled in this study, our results are encouraging and we believe that this therapy should be given consideration when planning a multimodal approach. Certainly further studies with larger populations should be encouraged to achieve definitive results‘

There are other studies you can look at online regarding this medication. I used to use it at first then stopped when I felt I had healed enough.

It’s supposed to be good for urinary tract stuff too.

[Balenul]

I tried it also. I took it in different periods in this 4 years (at least 2 months each time) but I did not found it helpful sadly : (

I tried PEA also but did not really help. What I think helped a bit is Tiobec Dol a supplement. Search it online.

What I try to find now is something that can somehow replace the need to take levofloxacin but sadly I did not find yet something so good as it for inflammatory problems

Will still try things. I tried Desert Harvest Aloe Vera for 2 months but again did not do much, I think is even possible to flare me in some moments. They said is good for IC/BPS and chronic prostatitis....

I really don't know with what I can replace the levo or at least what to try. I tried quercetin also, pollen etc.... Maybe I should have tried them at least 6 months and not only around 3. Maybe Webslave or others have other ideas for what I can try instead of levo. Like I said internal physical therapy is not available in Romania.

[LivingRoomFanatic]

I tried it also.I took it in different periods in this 4 years ( at least 2 months each time ) but i did not found it helpfull sadly

Ahh ok, that’s too bad. Sorry to hear that.

[Balenul]

Ty for empathy. Yes my symptoms are very severe when in a flare and sadly vacations or other things don't help me. I can feel ok if stressed or very bad in a vacation ... But I will still fight ofc and this summer gave me some hope

[LivingRoomFanatic]

I know you don’t have internal therapists near by, but do you do your own internal massage with a wand?

[Balenul]

I will go in 2, 3 months in Netherlands to F-act clinic for a check up. They will teach me there personalized exercices and I think also how to use a wand. I saw they also know about Wise-Anderson protocol. Some members visited the clinic and had good opinion. What worries me very much is the good effect Levofloxacine had this periods.... I mean is a huge difference if I take the pills it or not. I know is a poison, I repeat but right now helps me very much and I don't know if I have a infection or is the anti inflammation part or both..... hard to say. I don't really know what to try as supplements that have strong anti-inflammatory properties and might help (as I told you I tried many already , maybe I stopped them too fast). In Romania we don't even have the 4 glasses Stamey test, max we have is the 2 glasses one and that was ok 2 years ago. I did many urine cultures, 2 times sperm and one time urethral secretions but last year I only checked the urine few times and all was ok so I don't think is a infection. My urologist from Madrid don't think is a infection but he also had no idea what I could try for anti-inflammatory help anymore..... so I am opened to ideas. Neuropathic pills as Gabapentin stopped working and Lyrica was always useless, same with amitriptyline. Duloxetine don't let me urine good, I already have problems in urinating decent. So right now I am kinda stuck. Need to put a signature since maybe will help some. Hot baths still works decent if the water is very hot,

Ps.... my symptoms started also at 36. amazing and I am soon 40. I simply hate my penis for this constant urethral pressure like I always have to go, the urine trap in penis feeling sometimes and urethral pain and burning in some occasions. Is hard.... in first year I only had the sensation to urinate all the time, sometime very big or sometime decent but always present but in time more symptoms appeared and always in urethra. I lost all my bladder feelings....

[LivingRoomFanatic]

That sucks man. It’s a tough ride this stuff for sure. Some great information on here that really helped me find what worked for me. I’m in my first serious flare right now and feeling stuff out and I think I’m seeing improvement.

Most will tell you that seeing a pelvic physio is the biggest improvement you can make to getting better. So there’s a great chance you will get some success in Netherlands.

[Balenul]

I hope so... I saw many doctors and therapists. In spain, poland etc all with different ideas. Also top urologists have different ideas is hard and confusing my friend. But what can I do I must keep going

[Balenul]

This summer was not bad I had some success, was mixed and made me confident but slowly things deteriorated very bad and I think I am in one of the hardest part of my journey.... I don't even know what to do anymore. Doctors wasted my money and many proposed me different solutions and today I think was the hardest day of my life, yesterday was also horrible and for the first time I start to panic.... I do the diet, I do the stretches, I tried to relax, I do hot baths and I am simply worse and worse. I wake up every 30 min, day time is horrible also etc.

My urethral pressure, pain and sometime burning are huge and constant.... in some nights I must take a levofloxacine pill to sleep is helping me reduce the symptoms like I said. Is a poison I know but I must sleep.

The effect this med have is only working on inflammation in prostate, bladder and maybe urethra no? I guess is having no effect on pelvic floor dysfunction and irritated nerves in the area... at least I don't see how it can help there maybe Webslave knows more.

Neuropathic pills don't work anymore and they helped me so much in the past...

Is first time in 4 years when I feel very down. Also my symptoms changed urination gives me some relief but they are back very fast (some time ago when neuropathic pills worked I kinda felt worse after urination so maybe now is more inflammation since I repeat I don't think a antibiotic can help neuropathic pain caused be inflamed muscles, nerves). I also think the concentrated urine is affecting me (sometime my diabetes insipidus spray make the urine acidic since is not working like a normal hormon). So things changed but are as always in the urethra..... Some opinion can help me since right now I don't know what to do more. I take also quercetin, magnesium, sometime I even fast a full day (drink only water). In the past I admit, I did not do all the recommended things but now I do them and I am worse and worse.

Sorry for the sad post but I needed to ventilate a bit. My wife is understanding but I feel like a burden more and more

[LivingRoomFanatic]

Sorry to hear how rough it has been. Do you take anything for anxiety at all, since a large part of this is mental?

I take Duloxetine as it is also useful for pain.

[Balenul]

I had problems with Zoloft giving me PGAD so I am afraid to try them again. Persistent Genital Arousal is something horrible..... I know my mind is a mess also but I had so many good days last summer with no mental treatment. Now I repeat nothing works and trust me I don t know what to do next. Where to go and what to do.... Gabapentin is a neuropathic pill ans helped me, now only help is from the poison Levofloxacine even if I don t have infections and prolly only big inflammation in my prostate, bladder. My bladder neck obstruction half of urologists said to cut it and half to not do it. I talk here about professional not jokes I saw at first.... some say I have a painful bladder some not and trust me all are experts in pelvic pain. Right now I can only pray somehow I will get relief. The problems is symptoms are extreme and I also feel my case is very complicated since I had 2 major surgeries 4 years ago when all started. you have link of my story in this thread. I simply don t know how I felt good some months ago, I changed nothing

[webslave]

But the point is that you DID feel good some months ago. This condition typically waxes and wanes (goes up and down). Now symptoms are up. Wait a while and they will go down.

Meanwhile, if you read enough here and think a bit more about it, you will probably be able to identify the actual triggers and avoid a new flare.

Note: It's rare for people who do not fill out their signatures to recover, because it shows they are not prepared to give the time and attention to this problem that they need to in order to be cured. It's a pattern I've noticed over the years.

[Balenul]

I completed the signature Webslave, you are right. In the moments I feel good I forget in many occasions do what is needed. I must do more even when I feel good. This time I really don't know why I feel so bad since nothing changed in my routine last month.

You are the admin and saw many cases. I guess I am not the only one with so extreme symptoms you saw. You think with ambition and consistency I can recover to have a decent life? I know 100 % fine is impossible

Admin comment: I was much worse than you, and today I have no symptoms. Of course you can recover, but you must look carefully at all factors: diet, stress, pelvic tension etc. There are a lot of things to consider.

[Balenul]

Ty Webslave.

I must do things more consistent even when I am better... I can't even imagine what worse than this flare means since is 24 / 7 but I believe you ofc. You can have so many symptoms at same time in some cases... they can also change in time etc

One question please, this always confused me. In case of pelvic floor dysfunction only (tightness) that also triggers many things ofc but no IC/BPS or bacterial problems (UTI, prostate, urethra etc) is it normal for pfd to wake some persons all the time? Some say they are fine when they sleep if they only have a pelvic floor dysfunction and I was also able to sleep first months but in time my sleep started to be very affected also. I was waking up only 1 time when I was able to get to sleep. Maybe you have a idea for this better than the useless doctors I asked.

Thank you !

Admin comment: If you are waking frequently to pee, you may well have IC/BPS. Are you following the IC Diet?