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Haematuria post RT - Blood in urine

User
Posted 25 Feb 2018 at 17:03
I wonder if anyone can help. My husband has been suffering from Frank haematuria for nearly a month. He was admitted to A&E for urine retention and on catheterization expelled a mass of clots. He was flushed and given IV antibiotics then discharged. Within 48 hours it reoccured.A&E again. Three way catheter and watching for clots. He was kept in for several days and had a cystoscopy to cauterize some minor blood vessels and remove all the old clots. Uro did not think the vessels were the cause. They enlarged his water pipe and discharged him with a catheter for 14 days. He has CT scan next week. He still has intermittent blood in his urrine which is worse when he feels like the bladder is spasming a bit or if he passes a stool. Have others experienced anything similar? His Uro doesn't seem worried but clearly The Husband is becoming increasingly anxious that when the catheter is removed the retention will recur.

Any help gratefully received

The Missus

User
Posted 25 Feb 2018 at 20:45
The Missis

I finished my RT 25 May 2017, in September 2017 I was passing alot of blood clots, debris and blood either though my penis or my SPC. Some clots were 75mm long and sometimes I would pass 20 small clots in one visit to the loo or opening of the Catheter tap. The urine ranged from crystal clear to the look of flat coca cola.

Urology were saying it is likely to be the effects of RT, Radiotherapy seem to think it was the Catheter.

Since September I have been trying to get someone to look in my bladder and see what is going on, despite my efforts and a request from my GP my requests have been refused. The RT late effects did not offer any treatment. Following a second opinion four weeks ago it now looks like I will be getting a cystoscopy under general anaesthesia in the next few weeks.

After speaking to one of the specialist nurses on here I was advised to speak to the pelvic radiation disease association. I sent them details of my treatment and symptoms, they think in may be radiation damage and I will see a recommended urologist professor who has knowledge of RT damage next week.

The amount of blood and clots etc passed has generally subsided and I have not passed any blood etc in the last couple of weeks. My bladder capacity has been slowly diminishing and my usual consultant wants to remove my bladder.

One possible treatment for PRD is hyperbaric oxygen therapy and I started that three weeks ago.

It does sound like you have had more help than I did. If you have any other questions just ask,and please let me know how his scan goes.

Thanks Chris

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User
Posted 25 Feb 2018 at 20:45
The Missis

I finished my RT 25 May 2017, in September 2017 I was passing alot of blood clots, debris and blood either though my penis or my SPC. Some clots were 75mm long and sometimes I would pass 20 small clots in one visit to the loo or opening of the Catheter tap. The urine ranged from crystal clear to the look of flat coca cola.

Urology were saying it is likely to be the effects of RT, Radiotherapy seem to think it was the Catheter.

Since September I have been trying to get someone to look in my bladder and see what is going on, despite my efforts and a request from my GP my requests have been refused. The RT late effects did not offer any treatment. Following a second opinion four weeks ago it now looks like I will be getting a cystoscopy under general anaesthesia in the next few weeks.

After speaking to one of the specialist nurses on here I was advised to speak to the pelvic radiation disease association. I sent them details of my treatment and symptoms, they think in may be radiation damage and I will see a recommended urologist professor who has knowledge of RT damage next week.

The amount of blood and clots etc passed has generally subsided and I have not passed any blood etc in the last couple of weeks. My bladder capacity has been slowly diminishing and my usual consultant wants to remove my bladder.

One possible treatment for PRD is hyperbaric oxygen therapy and I started that three weeks ago.

It does sound like you have had more help than I did. If you have any other questions just ask,and please let me know how his scan goes.

Thanks Chris

User
Posted 19 May 2018 at 20:58
Sorry Chris, I did not even know the post was added to the forum and have only just seen your reply. How did the cystoscopy go? The Husband is still going through the mill. Gone from severe retention with clots to total incontinence now via three UTIs!! Three lots of antibiotics later and that has cleared. Uro prescribed neditol for over active bladder but it is not working. Had Mri to check fatty liver due to hormone treatment and awaiting results. Still full ED. Miserable stuff.

User
Posted 20 May 2018 at 22:36
R

The cystoscopy and dilatation have been a disaster, now eight weeks on and still getting spasms, perineal pain and stinging when passing urine. Last few days the clots have started again. Like your OH urine infections but with mine they cannot identify the infection due too the amount of contaminants in the samples. I did have two courses of wide spectrum antibiotics and that was absolute bliss for a few days then back to normal. Now on Regurin anti spasm but not doing much good. Getting retention even with the Suprapubic catheter and having to flush it quite often, a couple of nights ago I sat on the loo at midnight in pain trying to clear the blockage and sobbing my socks off, so as you say miserable stuff.

I am back to see the consultant in a couple of weeks. They are talking about injecting a fluid into the bladder in an attempt to repair some of the damage, consultant is not over optimistic but as he says "anything is worth a try".

Don't get fobbed off and keep fighting to get a resolution.

I will keep you informed of any progress.

Look up flaccid intercourse or flaccid insertion if you can master the technique it is out of this world.

Thanks Chris

 
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