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Radiation cystitis - I suspect!

User
Posted 29 Mar 2018 at 20:12
I finished my 20 factions of RT towards the end of March last year - 2017 - and suffered a couple of weeks of discomfort afterwards but then I have felt great. Beaten Cancer!! PSA was almost zero and in January it was too low to measure.

However at the beginning of February this year - 2018 - I noticed more frequent and painful peeing. My self diagnosis from PC UK booklets was Radiation Cystitis. I contacted the Urology/Oncology nurse who said to take a pee sample to the GP’s surgery. I did this and a dip with the strip said it looked OK but sent it to the laboratory anyway. The nurse came back and said it showed no infection. I mentioned Radiation Cystitis but of course, the medical profession despise self-diagnosis and she just said mmm...maybe...

As it became more painful, again I contacted the U/O Nurse again who said to come in. I did a pee flow test, poor, and was checked ultrasonically that I was emptying the bladder, which I was. The outcome of this was some Betmiga pills prescribed and booked in for a flexible cytoscopy- this will be in late April.

I have been monitoring my night time peeing and this averages about 4 times a night with a range of 2 to 6. Overnight, the pee is very slow, dribbly and painful but is somewhat better during the day unless I have been sitting for while. Standing up from sitting nearly always means I want to go but I try and resist for a few minutes if I can. Pee flow rate is noticeably better after I have been to the gym.

I am drinking 1.5 to 2 litres a day of tea/coffer/water/cranberry juice and limit wine to 250mL a day on the 5 days of the week I do partake. Tea/coffee are de-caffeinated.

I notice comments about bought Cranberry juice is mostly water so I have bought some dried Cranberries to munch as well.They’re quite nice!

So is this something I am stuck with for life or is it a passing phase? I am still on 3-monthly Prostap jabs too, scheduled to end later this year.

In February I was really very down in the dumps as I was thinking I had beaten it and all was going to be OK then these symptoms kicked in. I feel less so now, especially if there’s some hope of it being a short term thing, We have 3 holidays booked this year and I want to enjoy them.

User
Posted 30 Mar 2018 at 08:19

I had similar (though without the hospital tests). At Christmas, we were given a smoothie maker/blender thing, so I bought a packet of fresh cranberries, zuzzed them up with some water and sugar and quaffed that. Once a day for 2 or 3 days. Hey presto, cystitis gone! OK, it could have been pure chance, but I'm going to believe it worked for me. Fresh cranberries are the way to go.

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User
Posted 30 Mar 2018 at 08:19

I had similar (though without the hospital tests). At Christmas, we were given a smoothie maker/blender thing, so I bought a packet of fresh cranberries, zuzzed them up with some water and sugar and quaffed that. Once a day for 2 or 3 days. Hey presto, cystitis gone! OK, it could have been pure chance, but I'm going to believe it worked for me. Fresh cranberries are the way to go.

User
Posted 31 Mar 2018 at 09:25
Westyman

Radiation cystitis comes in many grades and I hope yours turns out to be a mild form. I completed RT in may 2017 in September and I started passing clots and debris, I have temporarily changed my avatar to show what a single passing of about 150 ml of urine produced on a regular basis.The clots and debris did diminish but by the the damage was done. My Urology department said it was the RT the RT department said is was my temporary SPC. My bladder capacity has slowly been decreasing since September last year. I was constantly getting appointments to get a resolution but this week I had a cystoscopy and the result is a maximum bladder capacity of 120 ml scarring and irreversible damage to the bladder. There are very few doctors or consultants who actually understand pelvic radiation damage.

I eventually got a referral to a guy in Manchester but he says I have few options, Keep my SPC for life or bladder removal and a bag.

I did try the cranberries but I think I was to far gone. I am currently trying hyperbaric oxygen therapy, it is frequently mentioned as a possibly effective treatment and has been known to reverse the damage. I note from your profile we are in neighbouring cities.

As I said I hope yours turns out to be a mild grade but if you need any other info just ask.

Thanks Chris

User
Posted 09 Apr 2018 at 12:04
I thought the Betmiga pills were beginning to help at last after a month as overnight was down to 2 pees and less painful. But the last two days it’s increased to 4 and 5 times a night and slightly painful again.
User
Posted 09 Apr 2018 at 13:55
Westyman

I was taking solifencin for bladder spasms and over active bladder, they worked well for a while then seemed to be less effective.

Thanks Chris

User
Posted 10 Apr 2018 at 17:00
Oddly enough the short talk at the PCa support group was about long term side effects of RT. Apparently the Rotal Derby Hosp. Have a 3 year funding to set up a clinic for long term side effects but will be many months before it’s active.

Seems that I’m stuck with the problem now and will have to learn to manage it. Though some other drugs may be more effective than the Betmiga ones. Tamsulosin has been mentioned.

As it was last week, it was quite liveable with. This week it’s less so.

I was also told that with time some drugs become less effective like mentioned by Colwickchris.

User
Posted 21 Sep 2018 at 22:28

Hi

Rather than wait for a new post to be moderated thought I would tag onto this one.

My consultant recently changed my anti spasm medication from Regurin to betmiga. The Regurin was quite effective but after a week on betmiga it seems to have little or no effect. My SPC is an added complication but for the last week I have had about five or six  3/4 minute painful spasms per day. I am passing bloody drips and clots, the catheter is draining okay. I will be at my GPs on monday morning but just wondering if anyone has had simalar episodes.

 

Thanks Chris

User
Posted 22 Sep 2018 at 08:58
This is a bit scary - I'm due to start RT in a few months and I hadn't heard of this before. Is it a common side-effect, do you know?

Thanks,

Chris

User
Posted 22 Sep 2018 at 09:52

Chris 

No don't start panicking, my problem is more related to the stricture created by the surgery, although I still have not had a 100 percent confirmation they seem to think my problem is mote to do with the numerous bladder intrusions than the SRT.

Thanks Chris

 
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