AUR

Thanks for your reply Paul,

When you say you chose to self-cath rather than having an operation do you mean you have to do this every day or just when you get retention? Can you pee normally sometimes? 

From what I've learned, two weeks isn't nearly enough time for the bladder to recover after being stretched.  If you do CIC to keep your bladder volume under about 400ml, the normal capacity for most men's bladders, it is possible to rehab.  I know that now from personal experiences shared on here and my own experience.  After 16 mo. I am noticing a definite change in my reliability and strength of my urges.  I was not aware until I went through all this that I could be retaining all that urine and not feel my normal "need to p**s" feeling.  I think I got myself into this mess by not taking the time to stop and find a bathroom when I needed to... probably started years and years ago.  Too busy.  Too much coffee.  Stress.  

Agreed!  Two weeks won't do squat, in terms of bladder rehab. and prevailing urodoc belief is that you CAN'T rehab the bladder when it's been severely distended.  But I do did what Keith did, and after a year or so of keeping the bladder volumes down to or below 400ml (with a few errors were I held more), I reduced the bladder size and regained different but notable urges to pee.  And ditto my own history... including X-country motorcycle and VW Bus trips across Canada and the US in my 20s.  "I don't wanna stop; I just wanna GO!"  Which of course started the problem of "not being able to go!"  

I've got some things to add about self catheterization.

It makes sense that my bladder is stretched due to retention. In my flow test today (TWOC), I got some urine out but not close to enough.

The nurse then tried to teach me to self cath. The idea was that I would build up my ability to urinate on my own and self cath 4 times a day to drain the excess.

Seems like a good idea. And I'm glad it worked for a couple of people here.

Unfortunately, I couldn't handle the pain of driving that catheter in by myself even with a nurse coaching me. So, I have another permanent catheter.

Next step; another cystoscopy in about 10 days.

Best wishes to whoever is following this thread, BB

It looks as though we are in the same position except, perhaps, that I have been of Tamsulosin (Flomax) for five years or so and Finasteride for the last four.

I haven't heard from the hospital which put my catheter in but contacted my local hospital who said I could attend a TWOC clinic there but the earliest date they could offer was the 11th of September, rather longer than the original two weeks I was originally told.

At this moment in time I do not know what the future holds because if I fail the TWOC I don't think I can have the Urolift. It is most disconcerting to say the least.

Do please keep in touch and let me know how you get on.

Best wishes,

Steve.

Thank you for the reply.

Agreed. We are in a similar position. Delays in treatment combined with the unpredictability of the human body, with the result of needing to wait for tests of urination without a catheter (Trial WithOut Catheter).

I appreciate you bringing up urinary retention probably preventing the Urolift procedure. I’ve only found this information on this site. My regular doctor and urologist didn’t  explain that to me. Official Urolift videos I’ve seen don’t mention this.

* At least I now know thanks to these discussions.

I will keep in touch about how my TWOC turns out.

BB

BB, are you considering Urolift then? Is this your first episode of AUR? It is mine. I think I have been very close to it though on several occasions such as is the middle of the night when I get up after a longer spell of sleep than my normal 2 hours and I feel extremely full. I would not be able to get more than a few drops out and have to go back to bed only to get up ten minutes later to try again and get a little more out, finally, after four or more such trips I managed to pass enough to relieve the pressure.

I am hoping, as this is my first episode, that I will be back to 'normal' when the catheter is removed and I can proceed with Urolift but I do not like having to have the catheter so long.

Fingers crossed.

Steve.

Steve; more similarities in our situations. 

- I am considering the Urolift. 1 1/2 years ago I had very minor urine flow issues. (After some urine flow, I just needed to wait a minute and the rest would come out.) Then a urologist presented a “staple” procedure as part of an experimental study. I didn’t want to be a test subject. Then my regular doctor didn’t give me much information about the “staple” procedure. (Two weeks ago he said that Urolift works for some but had complications for others.)

But I’ve kept this idea (Urolift) in the back of my mind as the least invasive surgical procedure for BPH. In the last few months I’ve learned more about it.

- This is my first episode of Acute Urinary Retention (AUR).

- Since mid April, my symptoms have been similar to what you’ve described. I’d wake up at 5 to 6 am. I could not urinate. I would do some walking with Kegles; result some unination. I’d do standing stretching, more unination. After some lying down stretches, urination would flow with a decent stream so the pressure was OK and I’d go back to bed. This routine worked until about two weeks ago. 

- My thinking about hopes goes along with what you’ve mentioned. This is the first time I’ve needed a catheter. When the TWOC test is done, my preferred result is that urine would flow enough so that I would not need the catheter for a while so that other procedures like Urolift could be considered. 

Here is to a positive outcome for both of us. 

BB

Hi Again,

Thanks for your reply.

Indeed we are, as they say, 'in the same boat', or at least very similar boats.

I was originally offered a TURP back in October 17 but wasn't too keen on that as a first option and so asked to be referred to another hospital which is doing Urolift. Finally got an appointment to have the procedure on the 8th of August (two weeks ago) but, as I was in the waiting area at the hospital, literally hours from having Urolift, I went into retention and had to be catheterised . Talk about falling at the last hurdle!

Now, like you, all hinges on the outcome of the TWOC. I just feel that I had too much pressure in my bladder and that if they had just drained my bladder I would have been okay but they insisted I needed to keep the catheter for, what they said, was two weeks which is rapidly becoming three or more.

The longer I have the thing the more worried I get about what is going to happen when it is removed. Still, one can do nothing but hope for the best and try to stay positive.

I wish for you what I wish for myself, to be rid of BPH symptoms for good.

Take care,

Steve.

Steve, Try to relax after the TWOC and you will be fine, but if the Prostate is blocking you passing water then the catheter is the only thing to keep you going. I self cathed until I could no longer get it in and rather than a second TURP had the Prostate with its Cancer taken out and not regretted it so far. Because I had a TURP 18 months before it was removed the only problem is I will be incontinent for 1 year, but when I do pass water it is now so quick it is amazing.

david

Steve; Too bad about what happened in the waiting area in the hospital.

A tough situation for sure.

One thing you’ve brought up is how BPH symptoms can occupy our minds for months/years.

Of course I agree to wanting to be rid of BPH symptoms for good. (Or at least for a few years.)

But as you know more than most, we are in a medical system which goes at its own pace where;

- We are gradually presented options / information by doctors,

- Where we learn more about our bodies,

- We figure out what the best treatment option is and importantly we learn the timelines of both our bodies and the medical system.

That’s a lot to understand.

One positive thing is this website with so many patients telling their stories about BPH and how they got through it.

I think it’s worth another cheer for a good outcome.

BB

BB: I agree with everything you say.

At least I had some 'positive' news today, the first since I had the catheter fitted, I received a call from the community nurse who said she would be calling around next Tuesday to remove the instrument of torture. This will mean that I have had it for exactly 20 days. Longer than the original two weeks but considerably shorter than the 4 or five weeks quoted by the hospital.

I will let you know how it goes.

Best wishes,

Steve.

Supertractorman

Thanks for your advice, I will be certain to follow it.

Glad to hear that Steve. 

BB

Hi BB,

Well I had my catheter removed just over 24hrs ago and, thank goodness, I am able to pee.

My first attempt was extremely slow but, as the hours have passed and I have drunk copious amounts of water, the flow seems at about the point where it was three weeks ago to the day, when I was awaiting my Urolift.

I had a close shave at 4:20AM when I got up to pee but could only manage a few drops, 50ml, but after returning to bed for an hour I then managed 200ml. Had to get up five time in all.

The experience has made me extremely wary of not 'holding on' for too long when I feel the need to go in case it happens again.

It has certainly brought home the fact that I need to have something done about it as soon as possible and I hope I do not have to wait too long to be re-scheduled for my procedure.

I hope that everything goes okay for you when you have yours removed on the 31st.

Best wishes,

Steve.

Steve; glad to hear the good news. The slow flowing urine experience in the morning is often a symptom of BPH as you know. And lots of people do an early morning routine similar to yours with success.

I hope you can schedule a procedure soon (I believe you are in the UK dealing with the NHS). I live in the US so I don’t know the details about that.

As for me, I’m coping with life with a catheter which has its ups and some irritating downs. I’ll find out on Friday what the next step is.

I hope your situation continues in a positive direction. 

BB

Steve; about my urologist visit today. The catheter was taken out. The doctor scoped my prostate/bladder, (Cystoscopy?). Not pleasant procedures of course.

Then I had the TWOC. I was able to almost empty half my bladder. Just OK. (It’s not easy to pass urine after the pain and being in the doctor’s office imo.) The doctor let me leave without a catheter but told me if I had serious retention again, I should go to the emergency room to get another catheter.

Also, it seems my prostate is not that large but that a lobe is blocking the urethra.

I will see the urologist again this Thursday for a follow up. I continue with the Flomax/tamsulosin.

I’m hopeful but nervous. 

Best of luck for your follow up, BB

Hi BB,

Good to hear that you have rid yourself of that instrument of torture. I don't know about you but I did not enjoy one moment of having the thing and hope to never have to make its acquaintance again.

No, I agree, having a cystoscopy is not that pleasant, nothing is really is it where the prostate is concerned, but at least it is a relatively short procedure. 

Since having my catheter removed on Tuesday I have had a couple of tense moments when I have gone for a pee and found it VERY difficult to get going. Luckily, giving myself plenty of time, I finally managed but the process is much more uncomfortable than before the retention.

I have not been able to contact my consultant's secretary to inform them I am fit to be re-listed for the procedure so I do not know when that will be, not too long I hope.

I hope everything goes well when you next visit your urologist next Thursday. Please do keep in touch and let me know how it goes.

Take care.

Steve.

 

Steve; I’ll keep in touch.

Let me know about the continuing process in scheduling your procedure.

Best wishes, BB