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Unbearable pain on urination post TWoC post RARP

User
Posted 24 Jun 2020 at 12:50

My question is. How common is this? Has anyone else experienced this before? All the literature seems to dwell very heavily on incontinence and nary a mention of "a crippling pain that makes you into a snivelling wreck when you pee more than 15s". Do other people get this, or am I a freak? (I'm open to both)

The pain is best described as 

A burning pain starting in the testicles and radiating upwards into the abdomen. It was a really intense pain. It built for about 5 minutes and then took another 5 minutes to go away. It made me sweat. I had to grip the basin and the door handle and could barely move. Crying was also involved.

 

(Edit to add: at least two other people have experienced this or similar. https://community.prostatecanceruk.org/posts/m240897-second-catheter )

 

Full story below...

I had a RARP on 12th June 2020. Diagnosis was in March, but COVID caused couple of months delay. Not too big of a deal as the cancer was contained in the prostate (3+4). I'm 50, very fit and active (cycle 50 miles in 3 hours, 800 miles in May).

Hospital treatment, surgery and first week of recovery went amazingly well. 

19th June - day 7 -the big day. TWoC Trial without catheter. Because of new COVID procedures they didn't want me hanging around, so out came the catheter and they sent me home with a couple of pads. "I've been doing this 5 years and in all that time I've only had a couple of people with problems. But here's the number for urology triage in case you have any. If you need to go to the toilet at night, go straight away, don't roll over and go back to sleep."

And that's pretty much all the advice I got. So off we went back home. In and out in 10 minutes. Seemed like a good result. First wee was very small and a few 'bits' of clot came out. Little bit of stinging, but nothing too bad. Second wee similar. Small and gritty. No real continence issues except I noticed when doing a pelvic floor exercise that if you release too quickly you can get a leak.

Third wee was a different story. After about 15-20 seconds I had this burning pain start in the testicles and radiate upwards into the abdomen. It was a really intense pain. It built for about 5 minutes and then took another 5 minutes to go away. It made me sweat. I had to grip the basin and the door handle and could barely move. Crying was also involved.

After two of those episodes, I decided to call the phone number they gave me. The urology triage nurse on duty consulted a consultant, who said "it sometimes happens - it should pass". OK cool. I'll try to stop being a pussy and get on with it then.

It didn't pass. I had a hard day and a very tough night. But after about 8 or 9 episodes like this with no sign of improvement and feeling more distressed as time went by, I called urology triage again. This time they told me to come in. I packed a bag in case they admitted me and my wife drove me in.

I was in for about 4 hours and ended up being catheterised again. (They were reluctant because of potential anastomosis damage, but it went in very smoothly.) The thing is that I was able to pee. I was able to control whether I peed or not. But if I peed longer than about 15 seconds I would get this pain episode and that would force me to stop, so I was unable to empty.

They told me 'it sometimes happens as a result of surgery', but I've not seen anything about it in any of the literature. I'm scheduled for a 'proper' TWoC on Friday in urology triage which will involve bladder scans and volume/flow measurements (x3, I think). Hopefully the extra week will help and my body will have recovered enough to avoid this pain from happening again. (They think it will be OK.)

My question is. How common is this? Has anyone else experienced this before? All the literature seems to dwell very heavily on incontinence and nary a mention of "a crippling pain that makes you into a snivelling wreck when you pee more than 15s". Do other people get this, or am I a freak? (I'm open to both)

Thanks in advance for any input/experience

 

 

Edited by member 06 Jul 2020 at 08:41  | Reason: correct a typo & tweak for readability, add new info

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 26 Jun 2020 at 22:34

Thank you. It's great that people care enough to have my back. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 19 Nov 2020 at 23:04

Yes. I only put up with the pain for 24 hours then went back to hospital (Urology triage) where they did a few tests and then put in another catheter (Saturday evening). The following Friday I had the TWOC at the same place and it was textbook perfect. It was as if nothing had ever happened.

I expect yours will be the same and that it's nothing more than your body needs a bit more time.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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User
Posted 24 Jun 2020 at 14:07

Alex

Stinging and discomfort is common after any excursion into the Urethra and or bladder. A UTI may cause discomfort and pain at the end of the penis and or the perineum. Strong and putrid smelling urine is a common sign of and infection. There could be a scab or debris lodged in the urethra that would lead to discomfort until it works itself out of the penis. I had alot of pain urinating a few months post op due to a kidney stone.  

A  less common problem is migrating surgical clips into the bladder, the  joint or the urethra. There have been a few of on here with the clip migration issue.

With a catheter in spasms are quite common but I don't recall spasms without a catheter.

I use instilagel or hydrocaine to relieve catheter discomfort.

Thanks Chris

User
Posted 24 Jun 2020 at 14:39
Cheers Chris. This is the pain I was referring to...

"After about 15-20 seconds urinating I had this burning pain start in the testicles and radiate upwards into the abdomen. It was a really intense pain. It built for about 5 minutes and then took another 5 minutes to go away. It made me sweat. I had to grip the basin and the door handle and could barely move. Crying was also involved."

Believe me I had a stinging urethra for a little bit and that was childsplay compared to this.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 24 Jun 2020 at 15:11

I'm wondering if you are leaking urine into your abdomen or below the pelvic floor?

No idea what that would feel like, but someone here may have experience of it.

User
Posted 24 Jun 2020 at 15:43

That was what I thought. "Leaky anastomosis?" Which is why I was getting agitated. But the registrar who checked me out and recatheterised me said that my abdomen was soft, which it wouldn't be if I was leaking. And no blood in the urine. He categorically ruled that out.

My bladder was bloody full though. Oh the relief when catheterised. 400ml came out very quickly.

Edited by member 24 Jun 2020 at 15:45  | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 24 Jun 2020 at 15:50

The most excruciating pain I have ever had was caused by constipation a few days after RARP and was in the abdomen area. It has been said before on here that pain in the urinary system does transmit to other parts. 

As Andy has suggested leaking from the joint into the abdominal cavity could be a cause and we have had guys on here with that issue. I was told if it was leaking you would know about it and could be quite ill.

I think you need to get some medical attention. Your additional catheter sounded like it went okay, but always a concern, having done lots of self catheterising I know you can do damage without pain. Perhaps give the nurses on here a call, number at the top.

Added Think our posts crossed, sounds like you guy is confident all is okay.

Thanks Chris

 

Edited by member 24 Jun 2020 at 15:54  | Reason: Added line

User
Posted 26 Jun 2020 at 12:07

To continue this story.

I'm just back home from a successful TWOC during which I had no pain whatsoever. Not even any urethral stinging. The extra few days of catheterisation was obviously what I needed. Still not really sure what the issue was, but now it's behind me it matters less. Catheter removal was again smooth and painless.

This second catheter did start to annoy me, particularly at night when the nerve sparing showed early signs of being fairly successful, but I am now a happy bunny again. RARP was exactly 2 weeks today, so I drove myself to the hospital.

It's the simple things like driving your car and having a proper wee. You don't realise how much they're worth until you can't do them.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 26 Jun 2020 at 12:40
Erectile stirrings at two weeks - Every ex prostate owners dreamπŸ‘

All the best

Cheers

Bill

User
Posted 26 Jun 2020 at 14:29

Fantastic news Bill. 

User
Posted 26 Jun 2020 at 20:12
Two weeks after surgery is awfully soon to be driving significant distances, Alex. Don't overdo it; you've had major abdominal surgery.

Best wishes,

Chris

User
Posted 26 Jun 2020 at 20:34
Indeed - have you checked with your insurer that they will cover you? With many insurers, there is no cover until 4-6 weeks post op and it is illegal to drive without car insurance. Some insurers just say they will cover you as long as the consultant has said you are safe to drive, which is usually at the 6 week post-op consultation, or if the hospital gave you a leaflet saying you could drive 2 weeks after the op you would be covered. John was unlucky - his was a company car and the insurer wouldn't cover him until 12 weeks post-op so although he could have gone back to work around the 10 week mark, he didn't because he couldn't get there.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jun 2020 at 21:15

I'm doing everything by the book. My discharge instructions say no driving for 2 weeks (that's today). It also mentions the DVLA requirement that you be able to do an emergency stop without discomfort. I haven't exactly practiced those, but in my estimation I would be able to do that. It's only 15 miles from my house to the hospital. If it would be a 2 hour drive I wouldn't have tried it for a first go. I also drive an automatic.

I know it's major surgery but we're all different and I'm very fit. I cycled 800 miles in May. I can also already lie on my side, cough, sneeze or bend down and pick something up off the floor without major discomfort and am up to 1 mile a day of walking. Now the bag is gone I hope to increase the walking. (I've had no blood in urine since last Sunday, the day after I was recatheterised - I did no walk that day).

I also haven't touched the codeine they gave me. Just didn't need it. Paracetamol and ibuprofen were enough. Still taking those, but  stretching out time periods between doses. Don't feel I need quite as much of it now.

Apart from that blip last week after TWOC 1, recovery has gone about as well as I think it could have, so far. I also have a ton of prayer support.

Edited by member 26 Jun 2020 at 21:26  | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 26 Jun 2020 at 22:30
πŸ‘

People don't always know to check so it is always worth flagging just in case.

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

User
Posted 26 Jun 2020 at 22:34

Thank you. It's great that people care enough to have my back. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 27 Jun 2020 at 07:41

Good idea to avoid the codeine if you don't need it. It can cause constipation, and that's something that you REALLY don't want with cut abdominal muscles: I speak from (very) painful experience there!

Cheers,

Chris

User
Posted 27 Jun 2020 at 08:15

Originally Posted by: Online Community Member

Good idea to avoid the codeine if you don't need it. It can cause constipation, and that's something that you REALLY don't want with cut abdominal muscles: I speak from (very) painful experience there!

Cheers,

Chris

Yeah that was my main motivation. Thankfully I only took codeine in the hospital on day 1 post-surgery and didn't need any other opiates after they took me out of recovery and onto the ward. (Although they did give me two shots of fentanyl in recovery and apparently I was a naughty boy while under the influence and tried to remove one of my canulae. I have no recollection of that though. Must have been funny. πŸ˜€)

So I had surgery on a Friday 0830, discharged Saturday 2000 and first bowel movement Sunday morning after just one dose of lactulose and some orange juice (which I've always found helps motility). I needed that to happen as I was told "no caffeine until bowels normalise" and I really felt dopey without my morning cafetière. The discharge notes I was given recommend 'peppermint water' or peppermint tea to aid motility as well. I did have some mint tea made from freshly dried leaves and also had taken a packet of extra strong mints to hospital with me (complete coincidence though - just because I like them). I had eaten those throughout the day on Saturday.

My surgeon phoned on the Monday stressing the importance of bowel movements and told me I was at least a day "ahead of the game" in that regard.

It is something to keep an eye on though as I noticed things slowed down a bit a few days later and a bit of lactulose and senna that they gave me with my discharge meds helped keep things moving.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Jun 2020 at 14:47
Mint is for helping to release the gas in the body (introduced during the operation), at least as far as everything I've been told or read says.
User
Posted 28 Jun 2020 at 15:01

Originally Posted by: Online Community Member
Mint is for helping to release the gas in the body (introduced during the operation), at least as far as everything I've been told or read says.

It will have that effect, indirectly.

My discharge notes say "Peppermint water recommended for bowel motility"

But having a bowel movement helps get rid of the abdominal gas ( I would imagine by reducing the overall pressure and allowing more CO2 to diffuse through into the gut).

My shoulder pain went away after a couple of good poos πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 19 Nov 2020 at 22:47

Hi Alex_cycles

I had almost exact symptoms upon emptying my bladder. Delayed reaction but after long the pain would start underneath, so to speak, then move upwards to my penis, terrible pain followed and I could do next to nothing to stop it. After a few days I returned to hospital A&E and morphine was given and a catheter fitted again. No pain with catheter in but very annoying of course. This time they advise to keep it in longer giving time to heal. I remain a little worried about the catheter being taken out and the pain reoccurring. Sounds like the same approach worked for you though?

User
Posted 19 Nov 2020 at 23:04

Yes. I only put up with the pain for 24 hours then went back to hospital (Urology triage) where they did a few tests and then put in another catheter (Saturday evening). The following Friday I had the TWOC at the same place and it was textbook perfect. It was as if nothing had ever happened.

I expect yours will be the same and that it's nothing more than your body needs a bit more time.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

 
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