Prostate Problems and Procedures

Thanks.  That is why I say have something else before the turp because you can't go back..Take care  Ken ( They come up with there will be know change and it will be all the same.  That is alot of bull )

Turp is the standard but when you have to do it 2 or 3 times whats the point...Ken

Do you know of a procedure which is the longest lasting of all outside of permanent catherization?

With looking at the research.  Uro-lift and PAE are new both are under 10 years old but all of the research looks good.  Lester look into them and fine a good doctor.  You will know which is right for you  Ken   

I am glad for you  I have a friend that has been doing it for over 10 years .  He just said he had to get use to it..Take care  Ken

Hi Jim and the other guys posting here.

I thought it was about time I updated you with my current position after everyone here has been so helpful with their experiences.

I hope all the other people on the other threads I have read and posted on will also see this? 

IF you remember I had 2 episodes of Acute Retention and had to put up with an indwelling catheter from 28th July this year until 11th September.

I was unaware previously that I had any problem let alone BPH; however after several DRE and Ultrasound I was confirmed to have BPH with my prostate measuring at 48CC. and pushing into Bladder and squeezing my Urethra.  I was offered Green Laser PVP and given a date of 6th OCtober!!!! 

THis was all a bit too sudden for me, and I wanted another go at peenig on my own and to learn Self CAth (after reading Jim James posts).

THe hospital was fine with this and on 11th September I went to a clinic at Hinchingbrooke Hospital in Cambs and had the Folet cath removed at 12 midday,

The nurse said quite simply off you go and start drinking normally, dont over do it. Come back at 4pm and we will see how you are getting on.

I drove home with some trepidation as you might imagine  having not peed on my own for nearly 2 months. (aprt from 24 hours on 14th August after which I developed a bad UTI and went into AUR again).

I am happy to report I peed ok and went back to the Hospital at 4pm. THe nurse measured my PVR which was 82 ml. She said you will be fine  but I insisted on her teaching me to self cat which she did and gave me a supply of disposable caths. I found the Tamsulosin prescribed did nothing for me apart from give me a headache and mild  Retro Ejaculation. So I knocked that on the head and self prescribed SAw PAlmetto, Pumkin seed oil and Stinging Nettle Root Extract. (I have been taking since mid August, so dont actually know whether its working as I had cath removed on 11th Sep!)

All I know is I can pee ok, and it has improved over the last month, from peeing 15-20 times a day to a more normal 7-10 (depending obviously on what  and how much I drink)  and once during the night on average. (I have not had to self cath once!) So on the basis of this I have cancelled my GL surgery and as a result of extensive googling and from posts on this forum have located a trial for Prostate Aterial Embolisation (just googel UK-Rope PAE.  There are 18 UK triasl happening right now)

I am going with a Doctor Charles TApping at Oxford NHS hospital UK)

I will keep you posted on how things develop.

Good luck everyone

Jeremy.

Jezz I am very happy for you.  I am gled you did not rush in the procedure and your doctors were ok with it.  Some are not.  Good health my friend  Ken

Hi Jeremy,

That's a great report and thanks for updating

! Do you know what your IPSS score is right now? (I don't want to post a link or this post will be moderated but I started a thread by that name in this forum). Because if your IPSS score is not too bad, what is the rush for PAE since you know have acute retention covered since you have learned how to self cath. PAE and the other procedures can only get better as time goes on, so for those that can wait it is something to think about. Also, and I don't know as much about PAE as many here, your prostate at 48cc is on the smaller size of enlarged, so the question is how much will PAE help someone with that size prostate as opposed to someone with a larger one. 

Curious, did the nurse just talk your through the self cathing procedure, or did she actually have you do it yourself in the office? If the latter, how did it go? What cath did they give you and what instructions?

Jim

I also think your story demonstrates how many doctor's knee jerk reaction is surgery when certain symptons present. It's up to us as patients to explore other option, often under trying circumstances. It's ironic that a very low tech procedure (Foley or self catherization) is the only thing that gives us the time to explore these options.

Jim

Since your PVR was 82, as you say, no reason to self cath (CIC) because of PVR. That said, you also do not necessarily want to wait for acute retention. 

So, now that you have learned this skill, you might want to check your PVR more often. Don't know how it works in the UK, but here in the U.S. I probably could have my PVR checked monthly in my doctor's office by a bladder scanner if I wanted. I think this is especially important since you just came off a Foley which gave your bladder a complete vacation. What you want to see is how the bladder functions post Foley, and again, not wait too long for acute retention.

Depending on what you find, you could leave things alone, or go on a limited schedule of self-catherization. If your PVR is 150 or under, you should be OK without CIC. However if it is over 150, then CIC might benefit bladder health (elasticity, etc.) The other number of interest wouuld be your natural void volume PRIOR to urinating. When you add this with PVR you get your total bladder capacity. I would not use this as an number to take action by but would make note of it for future reference.

You can also check PVR by self catherization, but there is always the small chance of UTI's, so best check by bladder scanner if your're not on a CIC shedule and have a choice.

Richard

Hi Richard,

THanks for your posts.

You have made a number of points and asked a few questions that need a response.

The Caths I have a Coloplast Speedicath 28692 Nelaton CH/FR 12/4.0-18/6.0 mm so it says on the box. I dont know what size it is from that, can you tell?

They come in green plastic tubes with screw caps on, They dont have coude tips and are straight. I did the self in the room under instructions from the nurse. It was a somewhat "toe curling" episode which i did not enjoy. you have to pass the thing a long way down to get to the bladder.

And for the next 24 hours I had a slower stream and some blood and clots in the urine. So I am not at all keen to do it again unless its an emergency.

PLus I have had one UTI and do not want that again! I could well  be back to square one with a Foley, so that is not a risk i want to  take right now!

I have asked to have my PVR checked but we are talking  NHS here and they just looked puzzled when I asked at the GP's, so I dont think its gonna happen. I looked on Ebay to see if I could buy myown ultrasound and they do exist but there are many options some cheaper some more expensive, including USB ones you plug into a lapop! I wouldnt  like to take the risk of  wasting  my money though. 

As regards PAE I am going to go and have the scans and assesements to see what state my prostate is in now, I need a second opinion and the NHS are very limited on this. The thing is I may be OK  now but presumably my prostate is gonna keep growing so at some point I am probably gonna be in trouble again, may not in a year or two but possibly in 5- 10 years! WHo knows. I will see how it goes but I do have BPH and unless I can reduce my prostate naturally then PAE would be the way forward in my opinion.

YEs it will probably become mainstream eventually but it may only be available privatley and I would have misssed the opportunity to have it done for free as part of a trial. So I will let you know how things go.

regards

Jeremy

 

That's an interesting choice for Cath. You have their "compact" model. The advantage is that you can carry it around in your pocket. The disadvantage is that even though it starts out at size 12F (12 French) it is misleading. Since it's  telescopic design, the widest part is probably close to 17F (higher the number wider the catheter). Compare that to what I'm using which is a true 12F all the way down the catheter. I also use a "coude tip" which is recommended for enlarged prostates. The product nuber is 28492 Tiemann Male FR 12/4.0 mm  Comes in a green plastic sleeve pre-lubricated. Something to consider for the future. 

The fact that you have BPH has nothing to do with whether or not you need an operation. What matters among other things is your IPSS score, and that's why I asked what it was. Plus in 5-10 years they may have something that will make PAE look antiquated. 

The blood and discomfort from CIC is perfectly normal when you start. I had it for several weeks and then it went away, but I definitely understand your concern about UTI's since you don't need to cath every day and that is why I suggested you ask your doc for a bladder scan every month or so. 

I also was very interested in home bladder scan units and I believe the one you mention (Veriscan lt?)with usb (probe only works with laptop) is around $6,000 USD, including an end user discount. It looks like an excellent unit but a lot of money so haven't pulled the plug yet. There is also a Chinese unit out for around 2,000USD, but not anywhere near as user friendly and looks like a real project to learn while the Vitascan unit is literally plug and play. 

 

Every time I have had a flow test each of the four NHS hospitals I've  attended over the years did a PVR (post void residual) after it. After I had my PVP in Newcastle my GP in Edinburgh referred me at their request to a local Community Clinic who did a PVR.  

Well I have been discharged now from the local hospital pending a referral to  another hospital where I will undergo PAE. But the thing is the referral hasnt been completed yet. The UK NHS is a big slow turning wheel at best!

I did ask my GP to be referred to have a PVR test   but nothing has happened.

You have to chase and chase and chase to get anywhere. WE are unique

in the world I guess though. Are you in UK?

I take your point on the IPSS score, however it has never been determined for me. I guess I will have to test myself? I will look it up. I am going to hold out for a Scan to test my PVR, hopefully it will be soon.

Yes, you do the test yourself. Takes less than five minutes. I will send you a link to the test via a private message. 

Thanks Jim.

My score was 14. But I found it quite hard to answer to be honest.

I have improved every day in the month since having the catheter out.

Also it really depends massively on how much I am drinking and what.

lots of Coffee and alcohol my two staple drinks make me pee every 30 minutes or so with urgency. If I avoid then its much less. I never drinkn water on its own though. But maybe should for a comparison. bit confused to be honest.

I was 29 (severe) at my worst just before I started CIC but I certainly don't recommend people to wait that long. At that point I literally had to push the urine out of my bladder using the palm of my hand. Now, I'm 7 or 8, which sometimes I can't believe but that's what it is. No idea if it will stick but enjoying it while it lasts. Probably the last time I was a 7 or 8 was in college!

Jim

7-8 is very good from 29!

Do you take any of the natural poducts for BPH?

I am on Saw Palmetto, SNRE, and Pumkin seed. Maybe I should stop to see if it makes a difference!  lol

Yes, I'm in the UK. It took me about two months to get my local NHS hospital to agree to refer me to Newcastle after I had contacted them and they had agreed to take me as a patient if referred. Then they had to agree to pay the other area health authority for my treatment. That also took several months.

We are entitled to be referred to another hospital of our choice if our local one does not do what we need if of course they agree that it is appropriate!  

No natural products. I took some once and didn't notice a difference, but that doesn't mean they might not work for some. The only thing that helped was daily Cialis, and even that stopped working mostly after a few months. Haven't taken anything in about a year. BTW I sent you another  private message your IPSS score question. 

 

Seems that your local hospital is lacking in its duty of care if it does not ask you to fill in a form for your IPSS score or check your PVR.

Have you done a flow test there? All of those things were happening for me in 1994. 

I am glad you fornd something that works...Ken

Any caffeinated drink will increase your urine output.

Do you keep your liquid intake to just below 2 litres a day?

I'm glad that it worked out for you  Ken

Thanks, Ken. You know they talk about "bph" like it's one thing when it's really a catch-all for a whole bunch of urinary symptons. So my bph is not your bph and what may work for me may not work for you. Unfortunately, a lot of doctors are either too lazy or not trained well enough to understand that and tend to formularize their treatment. Our job as patients is to research and challenge the doctors to make sure the path they are sending us along is the best one for us, not just the path they are used to. My advantage here in the U.S. is that it is very easy to switch doctors with Medicare, so if you run into a road block with one, you see another. 

Jim

Ive never filled in a form and have just been discharged (got a letter the other day). There was in any case no talk ofg any follow up. THey just pass it all back to the GP who then ignore you as well!

But my hospital is in on the list of being below whatever the standard is that is required so it doesnt surprise me! As you say not very good really especially as they know I have had AUR twice in 3 months!