Well havent posted on here since my treatment ended, have been trying to get on with thing and have tried to avoid this forum as I feel it can sometimes makes me negative, especially when I read about it recurring :( which is my biggest dread. Have had some councelling and have to except that its gone now and that I have to trust what my consultant says about it being extremely 'unlikely' to return. He has been great in fact he did an internal for me so reasure me, which has helped.
I have been unwell these last two weeks with Radiation Cystitis, OMG.......so painful and apparently is very common, it happens generally 3 weeks after treatement. I have never had pain like it, I suffered with water infections in the past but have so far had 3 different antibiotics batteling this and am taking painkillers every fours hours. I has caused me pain in my stomach where is hurt to walk, sit, stand infact it hurt to do anything. I am hoping this starts to do one soon as I am tired with it all now. I would be interested in anyone else on here to tell me of there experiences of this post treatment. I am hoping 2014 is gonna be a better year for me. Thanks for the messages I have had didnt mean to not reply just had no motivation for anything.
Hello Emma, I didn't even know you could get radiation cyctitis - so obviously I didn't have it following radiotherapyy. I've had 'normal' cyctitis in the past and I know it is unpleasant but yours sounds so much worse.
That's the downside from having all the treatments we've had I suppose and people don't realise that some of these will continue for good. (not the cyctitis though!)side effects from surgery, from chemo, from radio, from brachy.......and so it goes on.
Be confident though that your cyctitis will clear up - even if it seems to take forever, maybe due to all that's been done to our bodies, these things are always going to take longer to heal or to respond to anti-biotics. For me it's my bowels & my bladder, not working as they used to - but still working at least!! if they stop working then it's time to worry.
I'd agree about not coming on here every day - I think its a bit too much, so many new ladies joining the site, that's depressing. So much for the scrreening programme eh?
Stick in there - I know you've a strong personality from reading your posts and you will overcome this episode.
Sorry if I wasn't much help, but I hate it when people post here & people read but don't respond - even if they've not had the same experience, just to give some support
So sorry you having this on top of radiation treatment, I have been terrified of needing treatment after my radical hysterectomy, & will only know in March so.... Not too upset anyone, my fear of radiation is just more happening to my poor body & fear of the unknown! All the best Emma xxx
Hi Emma, im 15 months post treatment now and have had ongoing bladder issues for the past year. In saying that..it is alot better than it was.
I I had the same probs as you and went to a urologist. They did a mri and also a cytoscopy to check it was not a recurrence. They only found radiation cystitis and prescribed me anti spasm pills and told me to avoid certain drinks etc. It is much better now although still painful if I leave It to long before I pee. Have you spoken to the doc?? Xxx
I've read some of your old posts and you sound amazing. You have been an inspiration and I'm so pleased you've been told your cancer is gone. This is just a blip a and it will pass. Stay strong and concentrate on the positives. Karen x
just trying to update myself on the news of all the ladies who helped me through the op three months ago before I go back to work tomorrow... So much has happened, where has the time gone? All the best in 2014xxx
