Prostate Cancer Survivors






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Post catheter removal

I had HIFU surgery on the 14th of April in London and flew home to Scotland three days later. My catheter was removed at my local GP's one week after surgery. It is now four (nearly five) days later and my waterworks are far from normal. I'll try to give as brief a summary as possible.

I had surgery at UCLH on the 14th. Left same day with a catheter. Hated the catheter but it was much better than what was to follow. Had it removed last Friday morning (it's now Tuesday night) by the nurse practitioner at my local medical centre. Went off skipping like a lamb, I was so delighted to be rid of the thing. The problems started that afternoon when I tried to empty my bladder for the first time. I would have an urgent need to pee, rush to the loo, and then nothing would happen for ages. When it did, only a few drops, hardly even a trickle, would come out. And to produce that I was HOWLING in pain. I rang the medical centre and spoke to a GP (it was my usual one's day off). She said it would settle down eventually. I googled it (of course) and found my symptoms exactly matched those experienced by many men post catheter removal, and that they should clear up within 48 hours.

Later that evening, things were so bad that I rang 111. I thought I might be in retention. A doctor rang me back and arranged for me to go into the local hospital to have my bladder scanned and my urine tested. I wasn't in retention, and I didn't have a UTI (I'm still on antibiotics so I didn't think I did). They said it was usual post catheter removal and would settle down.

Monday morning things were no better. I emailed my GP. His reply was disappointing, to say the least. He said he didn't know about 'this HIFU' but my prostate was probably swollen and restricting my urethra. This, you'll note, is a different diagnosis and places the blame on the original surgery rather than on the catheter. A curious switch, considering this was via email. He apologised that he couldn't help me and wished me luck with it (essentially washing his hands of the problem).

I've been trying to contact the specialist nurses at UCLH. I was given a card with their number in case there was a problem. I've rung and left messages two days running. Yesterday a 'support worker' rang me back and took details. He said a senior nurse would call me soon. No one rang. I left another message today. Still no one rang me back.

I had a pack of opioid painkillers they had given me in case my prostrate hurt. It didn't, so I still had all of them. I took them for three and a half days. Today I stopped taking them and although it's uncomfortable to pee, it doesn't make me scream in pain any more. There's still the same strong sense of urgency, and then only a weak trickle or a few drops. There have been three of four short streams over the last two days, so that's a small improvement. I'm still going often, probably about once an hour. Sleeping has been problematic as a result.

I'm receiving absolutely no help or advice from those who ought to be helping and advising me. In desperation, I'm turning to the forum. How common is this? How long is it likely to last? Are there any techniques I should be employing to help matters along? For example, should I be fighting the urge to pee and making the gaps between attempts longer? How much water should I be drinking? (My GP said 1.5 - 2 litres a day.)

I see that someone else asked a similar question a few weeks ago. He only received one reply, and that was from someone telling him to see his GP or urology team. As you've just read (if you've made it this far), mine aren't helping me.

I would be enormously grateful for any advice that the forum might be able to provide. I'm fast approaching my wits' end.

Many thanks.

Re: Post catheter removal

Although I did not have the same issues with the catheter, friends have.
Mine was in for 10 days, longer than anyone I knew. It came out with no issues. Some “dribbling” when twisting or moving too quick but with the exercises to tone everything, cleared up swiftly.
My friends on the other hand; between 5 and 7 days post surgery had theirs removed. Same issues you had EXCEPT their doctor ( about a year apart during recovery, both in their 60’), put the catheter back in for another week. This helped with the pain during urination and allowed more healing time.
I had followed the advice from this group when preparing for surgery and had wash cloths, tighter underwear ( versus boxers) and antibiotic cream to keep the catheter tube greased up for easy sliding in and out while I moved around ( the wash cloths were to protect my clothing and provided a barrier between me all greased up and my clothes.
What they ( friends) experienced was the advice of a surgeon who never had a catheter installed post surgery and the “ yea, it sucks but it is part of healing” attitude. I had the support of this group and the collective knowledge of survivors.
All I can recommend is maybe having them reinsert the catheter, keep the area well clean and “greased” and endure just a little longer in healing the urethra scar tissue.
Best wishes