Living in Hell.

[Chris Anderson]

Well I am here just to say I can not get my prostatitis under control .It is slowly starting to ruin my life.It is putting massive amounts of stress on my family.
I have had this for over fifteen years but over the last twelve months it has been unbearable.
The only relief I get is if I ejaculate and massage my prostate.This lasts for a day or so then I get the full felling again.
I think the only option is to get it removed.
Does any one know of a good surgeon who has done this in the uk?

[Dave]

Hello Chris, sorry to hear of your situation; there are a few of us here from the UK. I think there are many surgeons who do LRPs but Christopher Eden would be one of note... works near Basingstoke and at Harley Street. Looks good on paper but I can't personally comment on his skill - as I have not had this done.  Another would be Alan Doherty who appears to work in Harley Street.... found with a quick google but no idea of outcomes or if he does them for prostatitis.  But of course no one can really tell you what the outcome will be for you... However can't hurt to go and talk to them (other than the wallet of course) but probably wise to talk to some other urologists about this too... not just the surgeons.   I think several people here have had their prostates removed by Mr Eden - I think with mixed outcomes, though that may of course be absolutely nothing to do with the surgeon; I don't know the details so can't comment.

But google them and see...   

Dave

[Chris Anderson]

Thanks for your reply Dave.

I have seen many  urologists over the years and none have helped me .Two of them said it burns itself out in about ten years.

I went to see my gp today and he is probably more helpfull.

I just can not understand why there is is not one single prostatitis centre in the uk.

[Chris Anderson]

Blake said:

I don't know of anyone in the UK. But  you might could talk to dr krongrad and possibly scheduling aflight into the U.S.A and getting it removed if you can not get it out in the UK

Yes I spoke to dr Krongrad some months ago.He was very helpfull.If I  had the funds I would fly over there right away .

[Dave]

One urologist told me straight.... money.  All the research money is going into prostate cancer. No one is really researching prostatitis. There are not enough patients and no obvious drug to generate a fat profit from. I'm sure there are many other conditions. 

tbh my experience with urologists has generally been the same as you - except for one I think. Ultimately they seem uninterested and/or unwilling to even contemplate investigating beyond a scan etc. Because they have decided the answer... untreatable.  I'm at the 12.5 year point now.  Lyrica has helped alot since mine went ballistic.... to tone it down a bit.

Good luck

Dave

Chris Anderson said:

I just can not understand why there is is not one single prostatitis centre in the uk.

[Chris Anderson]

My gp  prescribed me Gabapentin yesterday I am going to give that a try.Thanks

                                            

[Jon]

There are many surgeons in the UK doing LRP, but only for cancer patients. As far as I know, Chris Eden is the only one who will do it for prostatitis, and you have to pay, of course; it's not on the U.K. National Health Service for prostatitis. My understanding is that his success rate is high, but especially one member of this forum had a bad result. Another member, Nick, had a really good result initially, but hasn't updated for a while. I wonder how he's getting on? Nick! Phone home! 

[Nik]

Hi Jon.

Overall doing very well, no regrets about the surgery. The debilitating pain has gone. There is some pelvic discomfort left following orgasm for a day or 2 but nothing that ever leaves me lying in bed for hours/days like before the surgery. Totally continent, erections even without pills have recently become good quality-just take a little longer to achieve than before-but nothing significant (still only 8 months out). Orgasms are still exactly the same except for reduced ejaculate. Now I ejaculate cowpers fluid only-better than nothing.! In the beginning I would also loose some urine during masturbation orgasm but strangely enough not during sex orgasm. I can only theorise that the extra pressure from the vagina was enough to prevent this. Now however,  even upon manual stimulation I can prevent this happening during orgasm. You learn to control your sphincter in a different manner even during orgasm.

I NEVER get night sweats anymore like before.

I have normal energy levels now (for someone looking after kids anyway LOL).

I have no penile shrinkage that some report after surgery.

I lost 5kg since stopping the Lyrica (which was a nightmare to stop by the way, had to gradually ween off-I thought Tramadol would be the problem but I never found Tramadol caused any dependency)

I would never have been capable of looking after my twin girls had I not done the surgery so for me it was the right decision. Its not an easy decision to make however and is definitely last resort. The recovery process is mentally and emotionally challenging.

[Nik]

I forgot to mention in addition to above that I no longer have to worry about the 70% chance of prostate cancer occurring at a later date as Dr K & E have been finding in their prostatitis patients. Coincidence? It doesn't add up in my logic. Maybe if it was 30% but 70% sounds way to high to me. The chances are if I had left this to run its course I may have ended up having to do the surgery anyway but older and maybe too late for nerve sparing, or even worse too late for surgery.

[Jon]

Good to hear that things are going well, Nik. I'm sure that will be encouraging to others who are thinking about the operation.

[Dennis Taylor]

Nick, how long did it take for most of the pain go away. Seems, talking to some of the guys, it's around 8 weeks post-op. I'm at 6.

Thanks.

[Dave]

No harm in trying them, except maybe financial, but there are in fact many places that say they treat chronic prostatitis.... but that doesn't necessarily mean they will be giving any different information from your local hospital. I was seen at UCLH in London which my GP said should be regarded as one of the top places to go and by the team where the consultant has been described to me as the best expert in prostatitis in the UK.  However the advice was no different to anywhere else... i.e. we don't have any answers, so take antibiotics and keep fingers crossed.    The thing that seemed to happen quicker than elsewhere is things like MRI scans. (I should add I didn't actually get to see the consultant himself, just one of his people; this was on the NHS).  The difference between a specialist centre and the local hospital is that you can have  slightly more confidence that they know what they are talking about.

The Birmingham link above is interesting...  in their section on prostatitis, which says (in relatively standard text) to treat with  antibiotics, alpha blockers etc. they also include this text:

If no treatment seems to work, which is occasionally the case, prostatitis can be a difficult condition to manage. However most if not all cases eventually “burn themselves out”. Symptoms can continue for a long time, sometimes years, but almost always improve spontaneously eventually. It symptoms do become a long term problem it is important to remember that prostatitis is not a serious or life threatening condition.

I wish my body would realise it should improve spontaneously.  It is also a bit concerning where they say it is not serious... maybe its not going to directly kill you, but if it f**ks my life up then to me that is serious!

Interesting that their view is that prostatectomy is never the solution.

Chris - how are you doing now - any benefit from the Gabapentin?  

[Chris Anderson]

Hi Dave

Thanks for your reply .I came across those those clinics over the last year ago.

It is as if they read it all from a text book .I am taking a few herbal medications that help a little.

I have just started turmeric capsules and they seem to help with the inflammation.You know I have had this since 1996 and I never took anything for it after a year of having it .I just excepted it and carried on with my life  until a year ago, things just got bad.

I have not started the gabapentin.Just to many side effects.