My Uro says I should get a TURP, though he refuses to investigate my BPH symptoms.

Hi. I'm in the UK and am scheduled for TURP on February 11th at the Lister Hospital, Stevenage. Because I live in Hertfordshire TURP is the only treatment available. If I lived in Bedfordshire I could possibly get HoLEP instead. As far as I know REZUM is only available at a handful of UK hospitals anyway. There is supposed to be choice but it all depends on funding and cross funding across the NHS trusts. Until all the NHS trusts in the UK get proper funding any treatment will continue to be a postcode lottery.

You are entitled to have treatment where you want it. Google NHS Patient choice.

Also look at the NICE web site.

Your outcome depends on the procedure that you have and you need to fight for it. Is your GP not on your side on this ?

This is an NHS link to patient choice though it may get moderated so I will also PM it to you.

https://www.nhs.uk/using-the-nhs/nhs-services/hospitals/about-nhs-hospital-services/

Hey Derek

I feel he is being pushed into a procedure that he does not want. I know there are other procedure over there. Maybe it his doctor and only does Turp

There should be something he can do.....Ken

It sounds as if his whole area health authority only do TURP as is the case in several areas. That was the problem I had in 2004!!! Even then I fought and won to be referred from Scotland to Newcastle as did a friend from Inverness to London. The NHS even paid for his travel expenses for initial consultation, to go for the procedure and his follow up consultation.

If all else fails he should contact his Member of Parliament.

Hey Derek

I think Grunthos should do that. Tell them that I don't want a Turp and be sent somewhere else. He should put up a fight. I know I have read for years that you guys have a lot of the procedures there.

Some of the best doctor are there. I have talk with some of them. He should be able to talk with someone that has more option. It kind of in the back ages. Take it or leave it.

Did you get your nap in yet. I'll be up for a while. Did get some of my doctor appointments done today

Have a good breakfast.....Ken

He should Google Gordon Muir and Tim Larner in the London area as they have been doing GL for 15 years. We had a poster or two from Bedfordshire who had HoLep. It is ridiculous that a few miles from home and he cannot get there.

Sleep ? only from 1.15 to 4.15 and up and down since then. And this is one of the three days when I have to waken my wife at 7 am as she goes swimming. She of course sleeps like a log. We were not far from an earthquake once when on holiday. We were in the penthouse of the hotel and I felt my bed tilt as I was about to go to sleep and bits fell off the building but she slept through it.

Derek, I think this is only NHS England, not UK as had to pay for a second opinion in a different Health area in Scotland.

David

I'm not quite sure of your actual meaning. At that time in 2004 Scotland had to agree to pay the English health authority for the procedure. The Freeman in Newcastle accepted me as a patient but it took me over six months to get it done and most of that was waiting for the financial side to be sorted out.

The Scottish Uro wrote to me that I was looking at it with rose tinted glasses and both procedures were simply boring a hole.

When my prostate regrew over the next nine years my next uro in a Southern England TURP zone said that if I'd had a TURP in the first place that I would not be seeing him now. He tried to keep a secret of the fact that one of the kidney surgeons also did prostate laser surgery. I only found that out when seeing a locum.

Hey Derek

I have a son that can do that. He has 3 alarms to wake him up for work but most of the time they don't. I make sure he get up.

I have talked with Gordon Muir. Very good doctor. He has been in many of the trails also there is a another doctor Neil Barber. He is very good to and has talked about many procedure.

I hope he get a second opinion but that is up to him

I went to bed about 5 AM slept about 4 hours. My X wife had a problem getting up to if she did not get 10 hour she could not cope with the day. I just found out that my sister and my niece and her family are planning to move down here in April. There tired of Michigan and what a change. There will be staying with me till they find a house.

We will see how that goes. Have a good day my friend

Sorry if I've asked before. Any chance of your having an AUS implant for the incontinence. I know from experience how awful the incontinence can be.

Glenn, They are not prepared to look at anything until 12 months has passed as in their words " It could be alright then, plus as you have continuing urine infections that is possibly causing the problem, and you should not be having them now the Prostate is not there ! ", so just having to wait as I am afraid I don't know what else I can do .

David

David,

That's what (wait 12 months) the doctor who did my Greenlight procedure kept telling me. What he didn't tell me was that there was significant damage at the external sphincter that left strictures, causing the significant leakage that didn't get any better, even with the physical theraphy I had.Incidentally, 12 months is the time one has in NC to file a medical malpractice claim.

The leakage I had was not trivial. I would go through 8 to 10 heavy duty depends in a day; the bag in which I collected them was around 3 or 4 lbs per day. I finally went to condom catheters and a leg bag, which was better than the Depends.

I went to a new urologist who first had to deal with the strictures that he discovered. A balloon dilation and the first urethrotomy resulted in the strictures coming back within the standard waiting period (before AUS implant) of 3 months. He and his fellow at the time decided to do another urethrotomy and wait only 6 weeks. For the 1st week, I had a Fr 22 Foley in place. At 6 weeks the urethra was fully patent, so we went to previously scheduled implant surgery the next week.

I think that having the stricture area under pressure (the AUS is downstream) must help keep the strictures from coming back. It's been over a year now since the AUS was activated, and when I activate the AUS to empty the bladder, I get peak flow that's well over 30 cc/second--- if not at the level of a race horse, at least in the pony class.

Glenn

Glenn, Thanks for your info and sounds as though it is working well. I am going through more pads than the NHS will give me, but absolutely no control although I can hold quite a quantity but can't stop it or feel when I need to go. Often soak my trousers just going to sit on the loo, or when standing up after. Was to get an urgent cystoscopy in December but now they have a massive back log and don't know when appointment will come. Are strictures and sphincter seen on a cystoscopy. I have UTI's still, painful passing water and sore afterwards, infection below foreskin and anus is raw I think from urine filling pads. Can't wait for May to get something done and AUS sounds beneficial, not worried about erections or orgasms and at least Cancer is gone.

David

David,

I think you had a question there, "Are strictures and sphincter seen during a cystoscopy?" If so, yes, strictures appear as scar tissue. Regarding the sphincter, the urologist can tell when that region has been passed. When your prostate was removed, was that section of the urethra removed with the prostate, and then the two ends joined? If that was the procedure, and there's no stricture in the area of the sphincter, they you may recover some bladder control with ongoing physical therapy.

I sure feel for you with the heavy incontinence, having lived with it for nearly two years. As I mentioned, I found that a condom catheter and leg bag made life more bearable for me, although there are downsides to that. (Getting the adhesive to release and spending a long time getting a condom off without tearing the skin.) It at least was better than changing a soaked pair of Depends 8 to 10 times a day, and never really being dry.

Have you inquired about the possibility of an AUS if you don't regain continence after a year? I know a man in our city who had a prostatectomy , and then had an AUS implanted for his incontinence.He was also had developed ED, so he later had an penile implant, done by the same urologist (who also my doctor). He says both work fine. (Since both the AUS and penile implant both use a small pump that is located in the scrotum, it occurs to me that having dyslexia might result in an embarrassing outcome. : ^ )

Glenn, As I understand it the Urethra was removed which meant extra stitching and they think there may be an infection in the stitches which keeps giving me UTI's. They have told me I must give it 12 months before anything else is considered, but I am getting worse daily but they say I have to have the Cystoscopy first. I found the condom catheter was good although by 6pm it would not stay in place, but no leakage elsewhere and was dry. Was told not to continue with it as it would not help me in getting dry and had to use pads to make Pelvis muscles work which is not helping me. Fortunately not got dyslexia but it makes you smile at having all these choices to make, and what happens when you press the wrong button !.

David

Glenn & David

I'm so sorry for what you guy's are going through. Did you guy's have any problem with leaking before your procedures. I'm trying to understand. Was this after the surgery. Did the doctor do something he should have not done. Was there to much tissue removed.

I can't get it through my head. You have a surgery to fix your problem and end up with more problems.

I'm all most in the same boat but not that bad I got a stricture just before the prostate for kidney stones surgery which caused me 7 infection. I got it from the doctor going in and out of the urethra after 3 weeks. But I guess it happens. That is why I had the Urolift which is doing go. Over the last year I found out I have a tight external sphincter which I take Vasicare for. Works fine.

I don't know if this would help before you have the other procedure done is maybe use the condom catheter during the day if your at work and take it off when you come home and use the pads. That would help you relax your penis. You just have to do what you can to make you live the best life you can.

I am really sorry that this happen. Good luck with the next surgery I hope it helps you both.........Ken

Ken,

For me, never leaked a drop in my life. Just had BPH that sent me to toilet 5-6 times each night. Never got to point I could pee, although it was slow. Never had a UTI, never had a STD in my life. Had the Greenlight procedure, and my sphincter was damaged giving me strictures. Five additional procedures later, I had the AUS implant. It keeps me dry, the strictures haven't come back after a year. I squeeze the pump in the scrotum, and completely empty bladder in about 10 -15 seconds. So all in all, I'm satisfied where I am, given where I was. I'm very thankful that the uro who implanted the AUS was in the next city to us, only 30 minutes away.

Glenn

Arg! Need edit function. Meant to write, "Never go to the point I couldn't pee."

Ken, My problems started first with detecting Prostate Cancer and going on Active Surveillance for 5 years and then getting Sepsis following a Biopsy. After that numerous UTI's and unable to pass water so had to have a TURP. Incontinent after TURP but got dry and under control. When Prostate was removed after it had grown back was told it will take longer to get back to normal this time but should be OK in 12 months.

One question regarding AUS, sometimes I am uncomfortable with my testes, would this make it worse, or do you not notice it is there ?.

David

Ken, Had to speak with my Uro Physio over my problems this week and she then referred me to the Uro Incontinence Nurses who have put me straight back on the condom catheters as until they can do the Colonoscopy they can advise nothing. Although I appear to hold a fair amount of urine, I have passed a lot of urine into the bag, so a lot must have been going into my pad although it did not seem so bad. At least now I am not soaking my underwear and trousers when I go to sit on the toilet or stand up as I can now release the pipe from the comdom catheter when sitting on the toilet and pass water. Feel so depressed today as I seem to have gone back to a month after the Prostatectomy and getting no better.

David

Sorry buddy for what you have to go through.

Your just going to have to do what the doctor tells you to do until they find a answer for the problem

Just take one day at a time. I'm here for you if you want to vent. Just PM me....Ken