Why no expertise in the UK?

[bti20]

Not a post which is of interest everyone, but: Why the hell does no-one in the UK have any desire to treat CPPS? I have been bashing my head against a brick wall in this country for nearly one and a half years since I came down with this condition, with zero success - bar some improvement with time. I have seen people who are supposed to be 'experts' on chronic prostatitis / chronic pelvic pain syndrome shaking their heads and saying that 'nothing is known about CPPS'. There are great clinics in other parts of the world so why doesn't someone open one up here? Isn't there a HUGE gap in the market?

[Mike]

There is not much interest in the UK yet, the urologists are banging there heads against a wall praying for a doctor to refer us guys to, they all say that to me. They need some one to teach them also in general urology better ways to work with chronic prostatitis / chronic pelvic pain syndrome but mainly we need an expert to get a few UK national students train them up and spread them out like the PC experts etc are in the UK - there is good urologists in the UK just not in chronic prostatitis / chronic pelvic pain syndrome they all sub specialize you see inside general urology. Payment issues also doing loads of consultations and not surgery all day, need to up the pay in chronic prostatitis / chronic pelvic pain syndrome specialty big time to make it worth while, docs have to live. There are many reasons why! The Urologists inside the UK and outside will know why ask them, they will know, I am just taking a stab if I may.

You hit it right on the head; I suspect a Mecca in London would be created by say one of the docs on this web site opening up there. All those airports hub of the world, they would do well and plenty great universities to continue studying. UK is a nice country also to live. Please come and work here I can visit you daily just kidding...but I would bring copious amounts of notes for you to read you would like me I don't think .

Note: Please don't ask me about a UK urologist *I don't know any* I get a lot of that question I can give you the name of other fields of urology but *not* CPPS. For UK men the closest "expert" is Dr. Jordan Dimitrakov in Bulgaria, see ucpps.men docs page for details, this is what I tell people when they contact me with this question. He is popular with UK men.

Apologizes to non UK men for this thread it is important to us UK men though as I am sure you can appreciate. Thanks.

----

I am going to set up a lobby page on the BPSA web site soon for this purpose and others if anyone has any ideas contact me please: [email protected]

[bti20]

Thanks Mike. I can see that there are financial issues for these guys, yes, and I'm sure it's not some kind of 'conspiracy'. I guess it only takes one stray, pompous comment from a urologist for me to tar the lot of them with the same brush. Of course they're superb practitioners in certain areas; just perhaps not in CPPS.

Just an interesting thought: I imagine that there are recognised pain syndromes in most parts of the body. Are there any such syndromes that CAN be reliably cured?

Could it possibly be that chronic prostatitis / chronic pelvic pain syndrome is complicated because the genitals have a sort of 'double life' as far as their representation by the brain is concerned? - What I mean is that the brain must represent the penis in two states: aroused and non-aroused. I suppose I would be right in saying that most chronic prostatitis / chronic pelvic pain syndrome sufferers can have pain-free intercourse, but then experience pain afterwards? So that would suggest that one of the brain's 'representations' of the genitals has been unaffected - the arousal representation - while the non-aroused representation has malfunctioned. That could mean that the difficulty in curing chronic prostatitis / chronic pelvic pain syndrome would be the difficulty in disentangling these two representations: curing the defect in one of them while preserving the function of the other.

[alprost]

I think our best bet in the UK right now is to find someone with experience of treating chronic pelvic pain in women (after you have all of the neccessary Urological trests done of course).

This clinic is in the US http://aarpc.com/pain/gyn/CPP.htm but there must be something similar in the UK or at least some pain specialists who specialise in Pelvic pain. The problem is obviously finding them.

[Mike]

I would take the other approach that we need to import a doctor and tempt him here with a good wage and facilities. How though is the big question. The BPSA lobby page will try to address this issue as I say please post ideas for that page.

There is IC experts BTW there is a UK IC web sites with docs on it, the female IC doctors may not be interested at this stage looking into chronic prostatitis / chronic pelvic pain syndrome but maybe shortly.

http://www.interstitialcystitis.co.uk/c ... ittee.html

Who are these men they are involved with IC in the UK, maybe we can see what they think of CPPS:

Mr Henry Lewi FRCS,
Mr Paul Irwin MCh, FRCSI(Urol)

I will attempt to contact them and figure out how skilled they are, but I am very busy so no promises.

Look at the IC set up and look at ours we should be ashamed of ourselves full stop! Jealous or what...

Until we help ourselves nothing will change, expect to have chronic prostatitis / chronic pelvic pain syndrome for a long time yet guys with not much treatment of a high standard for everyone or any good doctors within the UK. I am going to start pestering my health bored and Urologist to see what I can do but a top doc needs to want to come here and most are all set up so no point in them coming here as they will see it, this is where the alternative idea of hijacking the IC-Er's comes in but we have to be aware they may not want anything to do with their poor relations.

Anyway at the very least in this thread we have highlighted 2 strategies thats something!

[alprost]

Anyway at the very least in this thread we have highlighted 2 strategies thats something!

Mike - Your strategy is what we should ultimately aim for. My suggestion was really relating to what we can do 'in the meantime'.

Al.

[Richard.N]

Alright boys?

For UK men the closest "expert" is Dr. Jordan Dimitrakov in Bulgaria

Bulgaria isn't that far away either. Think about the distances some of our US bretheren have to travel to see Dr. Shoskes for instance.