Catheters,Drugs and Operation times
Posted , 17 users are following.
Hi all,
Firstly a big thanks to all those posting stories on here.I have spent two days reading up and there are some very brave people who i wish only the very best for.
I am wondering if anyone can help me.I am very very depressed over things at the moment to the point even of wondering if i can carry on.
For the past year or so on occasions my bladder seemed to have felt a burning sensation that would keep me awake some nights all night.Docs though over active bladder or prostate.Few weeks back the stream became very poor so they put me on Tamulosin.4 days later the stream became strong again which was great but a month later it eased off back to the way it was but doc has kept me on it.Late last week though bladder cramps got very painful and saw a doc who put me on Oxybutynin to ease them.As the weekend progressed it did not help them monday night i realised i could not pee at all! I ended up at A&E who put a catheter in and kept me overnight.
I am 44 and have been sent home with the catheter on and feel totally lost over it.My gf is very supportive but just feel this will end things.I have to go back to the trial without catheter clinic next thursday and Urologist suspects prostate even though he says i am to young.I did have it measured about 6 months back and was only 25g which is nothing compared to many here but symptoms have got far worse over the past month.
All in all urinary issues have gone on about 2 years but did anyone else juust suddenly hit a quick time where they got retention and also did were they able to pee after having the catheter out?I will have had it in about 9 days when i get seen.
Also in the UK does anyone know the length of wait for NHS prostate surgery roughly because i fear if i have to be catheterised again long term its going to push me over the edge as i have shut myself away.
I am so sorry sounding rather dramatic but i am just so scared and all this has come as a huge sudden shock.
0 likes, 164 replies
dai12345 johnthompson
Posted
Hi. Just a comment on HoLep which I had done in Cambridge. Although it's a long way to travel from the North, there aren't yet too many places that do it as it requires great skill and takes about 1.5 hours for a large prostate. Tevita Aho practices at both Addenbrookes (NHS) and the Nuffield (private). He originates from New Zealand where the technique was invented and he's the nicest surgeon I've yet encountered. GL is more relevant for smaller prostates, is quicker and requires a bit less skill/training. Ref PSA, my prostate was 130 gm but my PSA was below 5 before the op so size doesn't always matter! With a low PSA and hence low risk of cancer, a biopsy shouldn't be needed as a TRUS should suffice and is quick, easy and very low cost. MRI scans can be excellent but the cost to the NHS is very high so may only be relevant if cancer is suspected from a high'ish PSA?
cartoonman dai12345
Posted
glenn77 cartoonman
Posted
How did you go about finding the best and most experienced surgeon? I'm currently trying to find the "best" surgeon to do an AMS 800 (artificial urinary sphincter emplacement surgery), and while I can three at university teaching hospitals within an hour of me, I don't know how to find "the best." I know I would want it to be done in a hospital with a low infection rate, and by a doctor who does the surgery fairly often. I assume urologists may have opinions as to which surgeons are good or quite good. But, I don't know how to find "the best" or even close to "the best." I've thought about calling Boston Scientific, the company that manufactures the AMS 800. They even have a web site that will point you to doctors using the AMS 800 within a certain distance of where you live, but that's about it. I suspect the manufacturer has data on surgical revisions/replacements of the AMS 800, but I doubt that they will share it.
cartoonman glenn77
Posted
The Urolift was a special situation, as it's a new procedure. I worked backwards, from local surgeons, asking how long they had done the procedure, how many they had done. I found an article that spoke of two of the most experienced doctors, one of whom I Googled and learned he'd done the Urolift trials for the FDA. There may have been others, but I had his name (and friends in Salt Lake I wanted to visit! :-)
. When I called the office, I found Dr. Steve Ganges available, approachable, open. That, from a surgeon! :-) After that, and knowing my situation had potential problems, I chose to travel to have him do the treatment.
I think by Googling, you will be able to find reviews of surgeons who do AMS 800 (I do not know anything about this!!), and Googling nearby hospitals and infection rates, you can probably turn up info there as well! You might start with the radius check, as you suggest. The more information you have, the better your chances that you will be able to report a successful operation! :-)
derek76 glenn77
Posted
When I later found one the hospital said that I would have to contact Boston Scientific to arrange for them to send a technician to reprogram my pacemaker before and after the scan.
Would you believe that at the hospital who fitted my pacemaker cardiology and the scanner department have not agreed a protocol to scan the devices more than a year after they started to fit them.
glenn77 derek76
Posted
I'm not surprised by anything in healthcare these days. It's awfully complex.
bernie82609 johnthompson
Posted
If after the second trial voiding you can't void normaly, ask your uro about a suprapubic cath. Thereis little to no pain with this, you can triall void with the supra in place and can wear a "belly bag" which will help you return as close as possible to a normal life. There is also a less chance of uti's. Be sure they use silicon catheters.
dai12345 bernie82609
Posted
johnthompson
Posted
Hi everyone.Just came back as i have been really struggling mentally with things and went to try to spend weekend at gf's house but ended up through night last night coming home as i was in such pain desperate to pee whilst cathetere was in! I guess thats bladder spasms and slightly eased today.I have a theory i think may be a cause or at least added to the issue and came to mind during moment of clarity but think i shall put it on another thread as i have already asked way to much on here with adding questions on etc.
What i DID come back to do was to say a huge thank you to EVERYONE who has posted.You took time out to answer what may just look like some text on a screen but behind that screen is a very confused,upset and scared person so to take time to comfort and advise was a very special thing.Ok i am starting to sound like a bit of a hippie but these days there is so much take take take that i just wanted to say i appreciate every one of your replies.I wish you the very best of happy outcomes because all of you deserve it :-)
johnclen johnthompson
Posted
After my incident with urine retention I had a bladder spasm or whatever it was for well over a week, perhaps 2. Even after the foley catheter was removed. It hurt. I wondered if it would ever stop. I think it was caused by my trying to force myself to pee out of desparation. And having my bladder way to full for to long. I don't know what size container they drained me into but it looked fairly large and it was full to the top before I was empty that night.
Hopefully yours will stop hurting too.
John
johnthompson johnclen
Posted
johnthompson
Posted
Hi everyone,
Just a very quick update.Went back to hospital yesterday to the trial without catheter clinic.Was worried i would have to keep wearing it but they removed it slowly which was a bit sore but no blood or issues which was great .Drank lots of water and went for walks around hospital grounds until i was bursting to pee.I was told once i was ready to come back to pee in the flow meter so after 2 hours i ran in and luckily as many say "Peed like a horse". Murse called me in and was a bit shocked as i had passed 841ml . The nurse said she felt my bladders enlarged over time due to retention but as she said she isnt a Doc so could not say,all she said was Docs looking towards Prostate yet had not even done a DRE which is crazy (Other Docs have and said it was slightly enlarged abrox 25g).She then scanned me to see what residual amount i had saying she would be happy to let me home with 75ml or less.She scanned and said "Oh" and then told me i had 312ml remaining!!!!
She did agree to let me home but said she would rather i hung around to see if i could pee again but i had no urge.So i left the office.Within 30 steps into the foyer i suddenly needed to pee and must have easily hit 300ml approx.
So more tests coming up but looked like the bladders been holding up to 1150ml's so now need to find the cause but this could be whey i guess i am always getting the urge to go so much and maybe the cause of the nurning.Turns out the cause of me going in was Doctors not communicating with one putting me on Oxybutnin and one putting me on Toviaz at the same time which just shut down everything.
Streams slightly slower today and still sore but started taking my Gabapentin again today.
Again though folks thanks so much for the support.
cartoonman johnthompson
Posted
I'm not familiar with those drugs (by name) but I am familiar with your overloaded bladder syndrome. Often the bladder will stretch beyond what it is designed to hold (300cc +/-) before signaling need-to-pee. Mine held a whopping 2500cc when my prostate completely shut down the pee stream, two years ago. You might want to consider CIC (intermittent catheterizing) once or twice a day; retaining isn't necessarily bad, but it increases the risk of infection, and irritates the bladder, when it remains stretched out for long periods.
Also, is your prostate ENLARGED BY 25 G above average? 25g itself is not large!
johnthompson cartoonman
Posted
Wow 2500cc is one heck of an ammount.You could have flooded a small South American town with that!
I have to say it is confusing me as to why the retention in general as it has happened and worsened over the past 3 years and i have not been on those drugs that length of time. Sorry those are the brands,drug names are fesoterodine fumarate for Toviaz and trade name for Oxybutynin is Ditropan . I believe they said 25g in total which imho is not that much at all especially when i see poor folk talking about 100g! But then as someone said i guess if its growing onto the Urethra it could be but i am really doubting it.But have been wrong many times before so keeping an open mind on it.
Any idea on how the enlarged bladder can be shrunk?Would exercise help? Will be keeping CIC in mind as i want to stop this burning pain.
cartoonman johnthompson
Posted
:-) My prostate is 38g, on the low side of "enlarged." Pre-BPH prostates are 20-25g, so your fits the "normal" range, it appears. That said, the problem happens when the hole of the donut closes up, which would prevent the release of pee, regardless of how much the sphincters are trying. I've been told that chronic stretching beyond normal will eventually cause "muscle fatigue" in the bladder. The bladder muscles are different from biceps and such; rather than long strands, they are little box-like affairs which once stretched out do not retract and recover their elasticity. Your mileage may, of course, differ, but something to consider in the equation... As for "bladder-tucks," I have not found any info on that idea! :-)
cartoonman
Posted
,,, and if you've not had a cystoscope visit your innards, it would be worth requesting, so it can be determined whether in fact you have a medial lobe growing into and blocking the space where the urethra should be free to release as nature designed it...
johnthompson cartoonman
Posted
Hiya mate,
As always your reply was in depth and helpful.It is strange because not many if any infact complain about the burning feeling along with the urge to go when talking about BPH.I had a cystoscopy about 7 months back and got the "All looks normal" and now i have been told they want to do another on 27th sept with a Urodynamics test shortly after (NOT a fan of that test,had it done in before).Actually wondering if it may be closer to a bladder issue such as IC but there were no signs of inflammation last time so its VERY confusing.One thing for sure is i do not have much faith in my Urologist who last time i was in agony just said to give up tea and coffee,then i end up in hospital.Crazy stuff! lol Bladder tuck souds great yet i just think of those in Hollywood like Mickey Rourke after his face lift and wonder how the public may deal with my younger and less saggy looking bladder! ;-)
cartoonman johnthompson
Posted
...still musing about your "younger and less saggy-looking bladder!" :-D Yes, good to keep a sense of humor while walking through The Valley of Diminished BLadder Function.... WHAT IS IT WITH UROLOGISTS???? I hear so many stories about urologists who seem detached almost to the point of distraction, about these matters that are really, really important to our quality of life???? Incuding my "home urologist." Last night I was on the phone for a half-hour with the uro-doc who did my Urolift in December, discussing followup options, to deal with a prostate that has grown in tight again. He was engaged, open to discussion, and while he recommended TURP (NOOOOOOOOO!), he could discuss PAE, HoLEP and Rezum (which he used to do, but stopped doing) in a non-defensive manner. Refreshing, that! And this is why I will fly 3,000km to be treated by him, rather than drive ten minutes to see my distracted local guy (or most commonly, his PA)...
I wish I had some ideas about the burning matter, but I don't. I used to have that too, and either I'm just completely ignoring it, or it has stopped being a "feature" of my toilet visits!
"Less saggy-looking bladder..." HOO BOY! :-D
nealpros johnthompson
Posted
I haven't done it, but others on here who are experts on CIC, say that if you do it regularly for a while, and thereby keep your bladder from stretching, it can eventually reshrink. There are many posts on this site about VIC, and they may be useful to you.
Neal
zdzislaw nealpros
Posted