Dat der flaring...

[Balenul]

Sleeper where is the prostate pain / burning localized? I am really curious if what I have now is around prostate pain. Before your bladder neck surgery you also had urethral / penis burning, pain? If you had BNI helped this also ?

[Sleeper Service]

My history is pretty clear from my posts - my BNI helped my flow tremendously, which took away about half my symptoms, however pain and irritation remained, although not as bad.

Basically: A year of pain and constant urinary discomfort, then the operation, then a year of better but still quite bad symptoms which slowly improved, then two years where it became consistently tolerable to good whilst continuing to improve until it eventually burnt out completely, which remained the case for four years before the onset of my second bout.

An operation will only help if you have a urinary obstruction (which does make the CPPS symptoms much worse). It will not cure your CPPS and, having had four bouts of this (three coincident with surgery for urinary obstruction - 2 BNI and a TURP (which I probably should've had rather than the second BNI)), the only things that work for me are relaxation, stretching, exercise, hot baths and keeping a positive attitude. Time generally takes care of the rest but only if I do the things I've mentioned.

There's nothing more I can really add other than it does get better if you take action and address the physical and mental issues that cause and perpetuate the condition, but this takes time, which is usually 2-4 years for me.

[Sleeper Service]

As for a general update on my condition, things continue to slowly improve with the odd hiccup. Generally I have mild symptoms which don't stop me doing anything although these can flare up to moderate now and then. Then again I have periods of the day where I have no symptoms at all. All very familiar territory.

The big question I always ask is this: "do I feel better than I did this time last year or six months ago?" and the answer is almost always yes, even on bad days. As I've mentioned, exercise and socialising help a lot as do the usual treatments. Life is not too bad at the moment.

[Sleeper Service]

A quick update.

Four years into this bout I still have minor symptoms that flare up and become bothersome now and then but which are generally not too bad and don't get in the way of doing things. As before, symptoms continue to improve as time goes by so hopefully this trend will continue.

Treatment is the same: relaxing, keeping physically active and not worrying about it too much.

[scotsman]

Hi mate - it's been a good while since I've been on the forum and only popped on when I was doing a password check as part of a security audit for myself.

So sorry to read that you are going through a second bout.

I'm still 'living' with it myself, some times I'm pretty much symptom free, whilst other days I get the same old pain. Still do stretching each day and probably once a week for internal trigger point work, but out of 10, I'd say my symptoms are around the 2 level compared to the bad days and for really huge chunks of the day I have zero pain/discomfort. Something I'm happy living with going forward, and I've accepted that. I know what makes it worse and I know what makes it better. It's been years since I've done any reading on CPPS, so I'm assuming the treatment options are still the same. I'm not on any pain medication for it these days - which is good. The Tramadol wasn't nice to come off!

All the very best to your ongoing recovery

[Sleeper Service]

Good to hear that, Richard.

Yeah, at this point it's more about quality of life for me. I've had long periods with next to no symptoms and long periods where it's been pretty grim. That just seems to be the way it is. At the moment it's tolerable and doesn't usually bother me that much or get in the way so I can live with that although I hope it continues to fade away, which in fairness it has done as this bout progresses.

It is what is, I guess. Glad to hear you're off the synthetic smack!

[scotsman]

It does seem to be one of those conditions that once you have it, then there is always a significant chance it will come back. I've accepted that and the life changes it's required from me to keep it under control or in check - such as daily stretching and meditation/mindfulness are better for my general health anyway. Plus as you get into your 50s then lots of other things seem to start hurting and going wrong! This is only just one thing in a list of things :-)

[Sleeper Service]

Usual semi regular update - generally ok with mild discomfort which comes and goes. A lot of good days and some not so good ones, which usually coincide with having a cold.

It still seems to be improving little by little so I'll just carry on doing what I'm doing - keeping active, not stressing and relaxing and stretching. Life is generally pretty good at the moment.

[Balenul]

Hello Sleeper as you know i had very similar symptoms as you.For me the diagnostic was Pbno and hipertonic pelvic floor.Internal rectal therapy helped me but gabapentina 1600 daily made me almost symptom free for 10 months.Was like a dream, i did not had Bni or anything else.Sadly it stopped working and symptoms are horrible again.Lyrica never worked for me.I guess is worth a try i think many cases have a big neuropathic pain problem in them.At leasy my case is clear.

I still consider Bni since a tight bladder neck can affect prostate and bladder a lot but i can sometime urinate very easy but sometime i struggle a lot.I think in my case is worst then a classic Pbno since my internal spincther is probably in spams in many moments.

Also in the last year before gabapentina did wonders for me i also started to have burning / pain in urethra etc.I read you symptoms before Bni very good but i am curious if you also had pain like me sometimes not only the constant pressure in urethra to go again.Maybe you remember.

Also i think in all cases central sensitisation appear in many cases and here Ketamine seems efective but even gabapentina / Lyrica helps here.

But for sure this conditions are for life with ups and downs....

[Sleeper Service]

Yes, I had pain as well. Symptoms tend to vary for me although it's been pretty consistent for the last few years - minor (usually) to moderate discomfort rather than outright pain.

[Balenul]

For me the biggest symptoms now is burning.... my urethra burns almost 24 /7... I know PBNO can give some burning but this for sure is something else...... prolly bladder, prostate, muscles etc. You ever had so intense burning? If so what helped you ?

[Sleeper Service]

Another update - had a good summer and then, as has been the case over the last few years, a flare up in September and October. Nothing drastic, just a bit of an increase in symptoms although not enough to stop me doing most things.

Just on the train back home after a couple of days visiting friends down south. Life is pretty good most of the time.

[LivingRoomFanatic]

How long do you find your flares last for folks? I know that’s a changeable thing and different for everyone. Just a bit down this morning as this one is persisting for me and it’s never been this long before. I’ll be in a better mood once I rise from bed.

[LivingRoomFanatic]

How long do you find your flares last for folks? I know that’s a changeable thing and different for everyone. Just a bit down this morning as this one is persisting for me and it’s never been this long before. I’ll be in a better mood once I rise from bed.

One more thing for you Scottish guys…Who do you use for your PT? Hoping for a reply because that could be a handy resource for me in the future. Thanks.

[Sleeper Service]

How long do you find your flares last for folks? I know that’s a changeable thing and different for everyone. Just a bit down this morning as this one is persisting for me and it’s never been this long before. I’ll be in a better mood once I rise from bed.

It varies. For most of the year it's maybe a day to a week but I tend to get a month or two around this time of year. That said, they're not that bad these days, the odd day aside, so I've been out and about and tend to find symptoms fade when I'm doing something.