Catheter Pain!!

User

Posted 28 Apr 2016 at 11:51

Hi, all just wondering what others experiences of catheter usage is, I had my RP last Tuesday and was released from hospital on the Thursday. The op seemed to go well, bit biggar scars than I was expecting but no real issues and just normal post op type pains around these wounds. However I have a catheter in as is standard and the experience is horrendous. Every single day I am in pain with it, if the tube moves it causes pain I then get an urge to pee which then spasms inside me causing everything to tense up the pain at times almost knocks me of my feet, I have brought this to the attention of the hospital staff while I was in hospital then my health visitor on release and then my GP yesterday, all seem to give out the same message, this is fairly normal, man up and get on with it,I have been prescribed Buscopan to help and the usual painkillers but nothing is really helping.Is this type of pain,common,or normal.Feel that this pain is being totally ignored and would just like to hear others experiences.

Dave B

User

Posted 28 Apr 2016 at 12:02

Yes, this is normal I am afraid. At least it is only for a few more days.

You will get better at thinking where the tube is as you prepare to move - rolling out of bed hurts more than sitting and then swinging your legs off the side, perhaps? Have you got the leg tape secure? That should be holding the tube fairly static during the day.

If it is the eye of your penis that is causing pain, you could put a little KY jelly just inside the eye to stop the friction burns / redness. But don't use any sexy lubes - they may not be compatible with the plastic of the tubing. Some, but not all, hospitals send men home with a topical anaesthetic gel for the end of the penis.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Apr 2016 at 12:59

Sorry... but after my RP I had a catheter in for 9 days and suffered no pain whatsoever.

I don't think pain with a catheter IS normal... they are not meant to be instruments of torture!

EDIT: from NHS site... "Bladder spasms, which feel like stomach cramps, are also quite common when you have a catheter in your bladder. The pain is caused by the bladder trying to squeeze out the balloon. Medication may be necessary to reduce the frequency and intensity of the spasms"

Maybe this is the pain being experienced?

Edited by member 28 Apr 2016 at 13:35 | Reason: Not specified

User

Posted 28 Apr 2016 at 13:42

My experience of the catheter following RP was also horrendous. I would pace the room at night in such discomfort....couldn't wait to get it out. Not long to go now and you will feel such relief.

Very Best

Gary

User

Posted 28 Apr 2016 at 15:12

DLB

Similar to others, uncomfortable at times yes, but not painful, as L said hospitals sometimes give out a gel, I was given instillagel by the hospital, but you can buy it at a good chemist about £3-£4 a tube, contains anaesthetic and antiseptic, read the leaflet, with some conditions medical advice should be sought. By passing, where the urine comes out between the catheter and the urethra can be quite painful.

Thanks Chris

User

Posted 28 Apr 2016 at 19:03

I agree that i dont think its normal to be suffering such pain. Yes its an irritant but other than that i didnt really suffer with it....would t want it again in a hurry though

Bri

User

Posted 28 Apr 2016 at 20:18

Hi,

No real pain with mine, just discomfort. I had lots of blood in the bag for the two weeks it was in situ. I was so relived when it came out. The urethra has been stitched back together so there will be healing going on. If the medics are happy with it then I suppose unless the bag stops filling or you get a very distended bladder it's just counting the days until it comes out.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 29 Dec 2016 at 20:26

Pete

I was quite surprised on a number of occasions that a TWOC was carried out when the bag was quite red. I think it goes to show it often looks worse than it is.

At our hospital once the catheter is removed they require two samples of a reasonable amount, my last TWOC I only managed small amounts so had to do three samples.

Stay relaxed and you should be fine. Drinking the water too quickly can allegedly slow process of passing urine. Having had a number of TWOCs I slowly drink water in the couple of hours prior to the TWOC.

Make sure the catheter is not yanked out, just smile at the nurse and say nice and gently no yanking,if nothing else it focuses the nurses mind.

Thanks Chris

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User

Posted 28 Apr 2016 at 12:02

Yes, this is normal I am afraid. At least it is only for a few more days.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Apr 2016 at 12:49

Thanks for reply, yep have managed to work out best position for tube through trial and error, just wanted a bit of reassurance that this is normal. For me personally I would have preferred to have been forewarned about this pain and therefore been better equipped mentally to deal with it, but hey ho role on Tuesday so that hopefully it comes out.

User

Posted 28 Apr 2016 at 12:59

Sorry... but after my RP I had a catheter in for 9 days and suffered no pain whatsoever.

I don't think pain with a catheter IS normal... they are not meant to be instruments of torture!

Maybe this is the pain being experienced?

Edited by member 28 Apr 2016 at 13:35 | Reason: Not specified

User

Posted 28 Apr 2016 at 13:22

No pain whatsoever unless it snagged while moving

User

Posted 28 Apr 2016 at 13:42

My experience of the catheter following RP was also horrendous. I would pace the room at night in such discomfort....couldn't wait to get it out. Not long to go now and you will feel such relief.

Very Best

Gary

User

Posted 28 Apr 2016 at 14:38

Thanks Gary that's exactly what I do at times pace around , roll on Tuesday

User

Posted 28 Apr 2016 at 15:12

DLB

Thanks Chris

User

Posted 28 Apr 2016 at 19:03

I agree that i dont think its normal to be suffering such pain. Yes its an irritant but other than that i didnt really suffer with it....would t want it again in a hurry though

Bri

User

Posted 28 Apr 2016 at 20:18

Hi,

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 29 Apr 2016 at 10:28

Thanks to all who replied, I tend to agree with the comments saying that they don't think it's normal, but kind of stuck as to what to do, as hopefully I will get it out on Tuesday I guess it's basically grin or should I say grimace and bear it .

User

Posted 10 Dec 2016 at 13:47

My penis is in agony. They given me oro morph and I'm still sore. I'm staying in hospital a second night. But I'm surprised the oro morph isn't working.

Walter

User

Posted 10 Dec 2016 at 17:04

I got it into my head that I had to have a catheter in for a week before I went in for my op. However I have been told it is staying in for two weeks, I was gutted.

Is this the standard amount of time now?

User

Posted 10 Dec 2016 at 17:14

Mark

Anything between 7 and 21 days has been reported by members. 7-14 is probably the "norm"

Thanks Chris

User

Posted 12 Dec 2016 at 09:39

Had mine out after 9 days. I absolutely hated it .

User

Posted 12 Dec 2016 at 10:32

My pain was intolerable but is now under control with paracetamol, codeine and ibuprofen. They also gave me Instillagel to squeeze on the head of my penis and are sending me home with some.

Feeling much better today.

Walter

User

Posted 29 Dec 2016 at 19:18

I was told to keep the catheter 14 days. Tomorrow I have a 'Trial Without Catheter'. Had a couple of slight spasms, seemed to happen at night. Also there has been a small bit of blood in the tube after I've been to the loo twice. Otherwise there has been no pain and the liquid is clear. Was a bit worried that the blood might stop them removing the catheter but from what I've read they're really looking to make sure you can pass liquid and aren't going to be blocked.

User

Posted 29 Dec 2016 at 20:07

We couldn't cope without instlllagel.

User

Posted 29 Dec 2016 at 20:26

Pete

I was quite surprised on a number of occasions that a TWOC was carried out when the bag was quite red. I think it goes to show it often looks worse than it is.

At our hospital once the catheter is removed they require two samples of a reasonable amount, my last TWOC I only managed small amounts so had to do three samples.

Make sure the catheter is not yanked out, just smile at the nurse and say nice and gently no yanking,if nothing else it focuses the nurses mind.

Thanks Chris

User

Posted 30 Dec 2016 at 21:41

Thanks Chris,

Today the TWOC went pretty well with no blood. Removing the catheter was a bit sharp. Have a bit of stress incontinence now but otherwise am watertight. Peter

User

Posted 23 Jun 2018 at 16:33

I came out after a Cystoscopy with a catheter I wasn’t expecting. They found a urethral stricture issue and have dilated it. Burning at the tip whenever I move. This makes my brain think I need to pee.

Never heard of Instillagel before. Just off to the chemist post haste. Hope you guys are right.

Alan

Edited by member 23 Jun 2018 at 16:34 | Reason: Not specified

User

Posted 06 Oct 2018 at 13:12

I’ve been home three days with my leg bag and changed it over today. The one they fitted at the hospital sat on my calf but this one has a shorter tube designed to sit on the thigh. I’m really not getting on with it. It seems to rub the tube against the tip of my penis much more than the one fitted lower down. None of us are experts in these things before going in For surgery!

I think the less rubbing of the tube you can do by whatever method must help.

It‘s heartening to know I’m not alone in finding the experience a bit of a challenge. Looking forward to it coming out.

User

Posted 06 Oct 2018 at 15:14

I had a thigh bag.

I found that the more I strapped the tube to my leg the better it was.

Still a challenge though. How long have you got to wear it. And why have you got it?

User

Posted 06 Oct 2018 at 15:37

Mike

Alan is quite right if you have got the catheter properly secured it should reduce the rubbing. I secure my catheter by putting the rubber part of the strap around the Y section of the catheter,this prevents it being pulled down. Snug fitting underwear will also stop the movement of the catheter against the penis. Go and get some instilagel, it contains antiseptic , anaesthetic and lubrication. Other lubes might work provided you are not allergic to them.

If it works the linked image shows how I secure mine.

https://goo.gl/images/BzytxB

Most pictures show the strap round the tube below the Y , I found that way quite ineffective.

Thanks Chris

User

Posted 06 Oct 2018 at 16:37

Many thanks for the insights. I’ve looked in the bag the hospital gave me and there is one thigh secure adhesive sticker in there. I had the robotic procedure on Tuesday and came home on Thursday. I should have the catheter removed next Thursday. I presume Boots stock instillagel?

User

Posted 06 Oct 2018 at 16:45

A large Boots will stock it.

My catheter was not for RP, it was after a Cystoscopy where they found a stricture.

I had mine in for ten days. Now I have to self catheterise once a week.

User

Posted 06 Oct 2018 at 17:03

Mike

Most pharmacies" should" stock instilagel, it is a standard requirement for users of supra pubic catheters. Only tried the adhesive fasteners once, by coincidence my urology nurse gave me a couple to try this week. They are supposed to last seven days, I suspect shaving a hairy area may be beneficial, but as you are just recovering from surgery you may wish to give it a miss.

Thanks Chris

User

Posted 06 Oct 2018 at 17:11

Thanks everyone, much appreciated.

User

Posted 06 Oct 2018 at 17:28

My straps were elastic with Velcro fasteners.

I think I had a different catheter system altogether.

mine had a nighttime bag or a tap during the daytime.

Thinking about it now, mine was not for temporary incontinence but to keep the Urethra open aftthe stricture has been dilated.

Either way I feel for you and all the advice here is still relevant.

If you keep on posting here and waiting for replies, before you know it will be time to take it out. 😉

User

Posted 26 Dec 2018 at 22:55

Hi, joining the conversation late I know - I am a week post op now and find the catheter pain around the eye of my penis can be debilitating. Having read earlier posts, I got hold of instillagel which has been a lifesaver. Another week to go before mine comes out ( trying not to think about that experience - codeine and instillagel at the ready) but in all honesty until then I am reluctant to move much in order to limit my discomfort. I guess it's just worse for some than others.....

User

Posted 26 Dec 2018 at 23:47

I found it was the rubbing of the tube when walking that was the most uncomfortable. I used some of the spare velcro fastenings to go around the thigh to keep it from rubbing as much.

It’s a relief to have it out so focus on that. Many don’t have any pain and I can tell you from experience if you do feel anthything it is over in seconds.

The first 24 hours can be a bit of a challenge controlling everthing but then it usually starts to settle down.

I hope the discomfort gets better and all the best for the removal.

User

Posted 27 Dec 2018 at 08:33

The secret is to keep it as still as you can.

As already mentioned, I used Velcro straps to keep it in place.

No need to worry about taking it out. It is out in a split second with little or no pain. The relief is immediate. just a little soreness and peeing pain for a short while.

Because of a Stricture I got from radiation damage, I have to self catherterise every so often so I have become quite used to it.

Hang on in there, not long to wait and I guarentee there is nothing to worry about taking it out.

User

Posted 28 Dec 2018 at 11:24

Mark, really don't worry about the removal, I was slightly apprehensive when I went in, but it was so quick and painless, and as said by others, bloody marvellous to not have it in there any more, I will admit to being lucky and not suffering to much for the 14 days it was in, only needed one syringe of instillagel on day 3.

Hope all goes well for you.

And on another note, if anyone wants a nearly full box of instillagel, drop me a note and I'll post it on?

Edited by member 28 Dec 2018 at 11:26 | Reason: Not specified

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