Interstitial Cystitis - I would like to connect with others

Thanks for response. How many years have you lived with rad cystitis
(bleeding, etc.)?

@jeffy1 I did not get it right away which is puzzling. I had stage 2 cancer of cervix and treatment 1985 ... bladder was never quitre the same but no visible blood until 15 yrs later... urologist camera inside... no treatment... then again 12 yrs later for six weeks, another inside check same thing... bleeding stopped, he showed inside of bladder and said radiation damage ... then a few times but then 2 yrs ago starte with the utis on antibiotics and exams inside and out and had 12 antibitics in 12 months ... fragile bladder... i used to take photos of the red urine but no one cared to see them.. finally end of 2024 urologist let me go from practice very nicely... no more antibiotics. 2025 .. no more bleeding but have symnptomatic and unsymptomatic utis and am on my own. only time looked like pure blood had not sipped water thru night. sorry to be so long and drawn out but bowel and bladder issues was told from radiaton but years ago we didnt get copies of our files .. i dont even knowwhat type of radiaton, 4 minutes a day each side for 5 days of the week . I live in northern ontario and we only have one urologist. Toronto is over 4 hours away and i can no longer travel due to f.i. and ibs etc. Thing is before cancer I was healthy! I cant scroll bac on this little ipad but have u had inside of bladder checked. J

Yes, the cysto showed some areas of fragile vessels, but didn' t appear bad. 2nd one I've had. Said have bladder inflammation. I'm in my 8th year post prostectomy and follow up radiation. The 2nd time I slipped and fell shoveling snow...not bright red blood, not too much. 71 yo. How old are you?

@jeffy1 82. I was 45 when had radiation in 1985. If that doesnt addup its cos i am bad at arithmetic! Yes they showed me the state of the walls of my bladder .. scarey... am surprised I didnt have to have it removed! Although not every time but I think some of the antibiotics were causing more bleeding.... there is an older article I think named "Late Stage RAdiaton Damage/pelvis" I will try and find it. Thing is it affected our colons too which is another story ! almost 2 yrs ago having internal exams female organce and 2 days later blood in urine! ugh

Thanks for info. How do you deal with thought that the bladder is chronically inflammed? Do you have to manage hard bowel movements?

@jeffy1 Oh hard b.m.s not in my vocabulary...unless take a little more Imodium/then raisins , its one thing or the other! Also have fecal incontinence since C.Diff 2018 ! Ah, wish it was only a "thought" .... now living with sore bladder, frequent, painful, 24/7 but even with both exits of food and drink frommy body I refuse to wear a "diaper" only time visit to dentist/optometrist just in case but to be quite frank and open about it... lately having "gas" so its a bit more embarrassing.... downhill slope with other issues (tinnitus, normal tension glaucima, possible rosascea... all those things the neighoburs cannot see! I have to remind myself how much worse it could be but this is life changing. 2 yrs ago they suggested removing my colon but I "know" as a poor healer and low pain tolerance etc. I could NOT cope with colostomy bag and heart goes to those who have t. You are young to be going through all this....

I was 62 when diagnosed with prostate cancer, spring 2016. Radiation followed the surgery. Had bleed after hard bowel year ago...10 years later. Fell this winter, very small bleed. Hopefully, that will be it for sometime. Each time I had CT urogram, cysto and cystology. Last cytology showed inflammation...maybe from small bleed. Appears you were 41 in 1985, 56 with 1st bleed, 68 with 2nd. I hope my future bleeds are that far apart, God willing.

@jeffy1 Wish you the best. I recall reading years ago a British study and a fair number of the people who survived cancer but were coping with quite problematic results of the radiation, saying they would not have had the treatment had they known. However, at the time, it is sometimes a life or death decision. I do think back and wish the whole thing had been explained to me more, the risks etc. After 5 weeks of radiation in 1985 I was told I had a 40 per cent chance of living five years (Princess Margaret Hospital Toronto). I try and think of all the people who di not make it... in face I was there for a few months due to medication reactin (worse than the treatment) and 3 women I shared a room with passed away. Very sobering ... they did say for many year Cancer can be beaten.. but not for all. Take care and thanks for the discussion. J.