To have Prostate operation or not

Hi no they have not told me exactly how big it is one said around 30 grms and other one just said it was big!, i got referred to another area quiet easily from here worthing sussex to kent where they do the Holep operation but im still very nervous about it and dont like the thought of retrogade ejeculation etc i have thought of having urolift privately when i asked the urologist the other day he told me it was only for old men! these people all say different things. i will try the Cialis thanks for the advice.

Derek76,  Interested to read your last paragraph of getting a move to Northumbria from Scotland. At present I am fighting to move just to another health area in Scotland and getting refused due to budgets. From what I can see it is not a "National " Health Service only a local Health Service. Any advice would be welcome as in constant pain from Prostrate and letter said to see a local man will be within the 12 week period.

That was in 2005/2006. The Freeman at Newcastle were happy to do it but It took about two months to get Edinburgh’s Western General to agree to my initial appointment. Then between them and the Newcastle waiting list it was another six months to have it done. The Freeman have a great urology team. They now do HoLep in preference to PVP.

Just before then a friend in the Highlands persuaded Raigmore in Inverness to refer him to one of the first two London hospitals doing PVP. They even paid all his out of pocket expenses.

We are as NHS patients entitled to be treated at the hospital of our choice particularly if a hospital in our area does not do the procedure or has a long waiting list. You can Google for references to that. I remember that NHS Scotland were and probably still do send patients to a big private hospital in the West of Scotland in order to speed treatments up.

I live in Sussex now and often my GP will get me seen at non NHS centres if NHS waiting times are long. I've had several orthopedic consultations, a CT scan and a colonoscopy at private hospitals as an NHS patient. In Kent patients are being offered treatment at a Calais hospital but have to pay their own travel expenses.

If you are having difficulty in being referred speak to your MSP.

The Scottish Health Minister was my MSP and I wrote to him when I was quoted 16 weeks for a Physio appointment. In his reply he said that he had not realised the waiting times were so long!!!

  

Thanks for that Derek, am trying to get to Western General, Edinburgh from Tayside as they can help my Prostatitis there, but Tayside Consultant says nerve pain and he cannot do anything to help other than wait for Pain Clinic and that won't be a cure. Tayside will not authorise at all.Got to try and go anywhere that can help and I believe the Western has excellent Urine Infection Specialists.  Will contact our MSP on Monday.

Strange when I wanted PVP in Edinburgh in 2005 they said that Ninewells did it and referred me there. It turned out that they did Holmium Laser a rough and ready laser version so I turned it down and insisted on the Freeman who were the nearest for PVP.

I also contacted Ayr hospital who were doing Gyrus another laser version that had good reports but it had a 12 month waiting list.  

Extract from a letter from a WG Urologist at the time! 

"Thank you for your letter. I will write to the Freeman and see if they are taking outside referrals. If that is not the case you then you will be forced to go down the private pathway. I have to say though that I think your insistence on laser prostactectomy is somewhat starry eyed. All we are talking is a difference in what form of energy we use to get rid of the centre of the prostate"   

I also spoke to one of the other urologists at the hospital knowing that Gyrus are trying to get their procedure trialled there and got the response that "We will not have that procedure at this hospital either" 

Edinburgh was at the time of Burke and Hare at the forefront of medical science and experiment but in the 1990’s they went  back to the Dark Ages. In fact Turkey were doing PVP years before Edinburgh and were actively encouraging it with banners over roads. 

I’m glad that the Western now have a urinary infection department. I got a prostate infection on the two occasions I had a biopsy there.  At the second one  after the female Uro refused to administer a local anaesthetic or an antibiotic prior to the procedure. I swore as each of the 16 needles went in. One must have hit a blood vessel as I started to haemorrhage and had to stay the night.  A doctor doing a ward round in the night asked why I was there. When I told him he said PSA terrorism.

 

 

  

There is a clear indication that patients move about if someone decides on a course of action.

My first 16 needle biopsy was done without any anaesthetic and was painful due to my Haemmoroids, the second time was under General Anaesthetic and I had Sepsis next day. They claim Antibiotics were given under anaesthetic so I will never know if I received them or not.

Letter sent to MSP so will wait and see what happens.

Your comments are most appreciated.

Good luck. Usually MP's and MSP's have hospital horror stories to tell:-)

 

Hi yes i have been reading about PAE there is a trial at southampton Hospital but no chance if you live out of the area the only other option with that is to go to Portugal and pay privately, its difficult apparently in Australia its on the medicare there but not here of course,

But im pleased to hear that Holep worked for you where did you have it done?, I live in sussex and Tunbridge Wells is the only place near to me that does this operation.

Had mine done at the Mayo Clinic in Phoenix..... was able to pick their best doc who's had lots of experience. 

Phoenix is a bit far for me! at least in the states you can get information about the surgeons experience not here in the uk your lucky to even meet the guy before the operation day?

In terms of dealing with your decision for the rest of your life. I think it's worth the trip to Southampton. I live in California but I flew to Virginia to have my PAE performed by the best at performing this procedure. Dr. Bagla has performed over 400 successful PAE's. He'd performed on prostates as large as 600 with success! I wouldn't allow the distance to dictate a decision on the quality if my life. Do your due diligence, don't just allow any procedure to have at you, the quality of the rest of your life depends on it. Godspeed, I pray you peace!

Yes its true it does not matter how far you have to travel im going to look into the possibility of PAE but not here. i think Portugal where one of the first pioneers of this procedure is based cheaper in euros i think! thank you for your comments.

Understood. After going througj BPH and having this problem for years, and now having been blessed enough to come out on the other side of misery into joy and just the relief of being able to pee and empty my bladder...my God i was in such pain, I'd actually stand over the toilet staring up at the ceiling saying "God if you're going to kill me...Please just allow me to pee first, and them take me!" I wish I was one of those guys who has billions of dollars, I'd make it part of my life's work to send men with this problem to the best radiologist available to matter the distance. No one should have to suffer through life and deal with the pai of not being able to empty their bladder. I'll keep you in prayer, you...keep your head up! Godbless.

You're welcome, you're in my prayers!

If you Google PAE Trials they are being done at ten locations. I don't see why they would not accept a Guinea Pig from Kent:-)

In the uk? I could only find southampton and they dont take anyone outside their area.

Google pae trial uk for several results.  If you pay you will find several.

An extract from it:

 

The National Institute for Health and Care Excellence (NICE) has now funded Cedar, an NHS academic evaluation centre at Cardiff University, to compare results of PAE with conventional surgery via a registry of prostate embolisation known as UK-ROPE. 

A total of 17 centres in the UK will recruit more than 120 PAE patients over the period of a year and will close the study when all men have completed their 12-month follow-up. The results will be reported to NICE by the end of 2016.

“Our interim results have shown excellent symptomatic improvement and our conclusion locally is that PAE appears safe and effective in around 80% of men,” explained Dr Hacking, whose team has now performed 70 procedures in Southampton.

“There is a small incidence of recurrence and it may well be that in a group of patients a repeat or alternative procedure will be required after a few years.”