Nightmare time

Hi ladies, 

firstly sorry for the rant!

im having a nightmare time at the minute, since October I have been bladder incontinence and found out a few weeks ago this is down to hole in my bladder where the tumour was pushing originally, the plan going forward is to leave me basically continually ‘wetting myself’ for the next 6 months to give the swelling from treatment time to go down and settle (I’m 6 mths post treatment) they also say it’s because they want to do another scan to ensure there is no live disease before doing any surgery! I’m at my wits end with it, I’m constantly on antibiotics for UTI‘s and can’t leave the house due to needing to be at the toilet every few minutes.  

Ive also recently started having major issues with my bowels where I physically cannot ‘push’ anything out, an examination from my gp explained I’m ‘swollen’ In there which will be making it difficult to pass stools but it’s got to the point where I feel like my muscles aren’t working to get things moving.  She explained it could all be linked to my bladder problems.

has anyone else had anything of this nature to deal with following treatment and if so has there been light at the end? I’m literally house bound now and honestly had a better way of life before I knew had cancer and during my treatment. 

Sorry again 

thank you all xx

I am having so many bladder problems too. However, I am the opposite to you. I needed to catheterise for 10 weeks post op. I know I still need further treatment on my bladder. Just to say thinking of you x 

Thank you for replying.  Do they know what is causing your bladder problems? I was offered a catheter but but I just leaked by it, so relying on Tena ladies now (costing me £54 a week at the min) I hope they find a resolve for you and things get put right, thinking of you to, take care, good luck xx

Sorry to hear about the awful problems you are having with your bladder. I was just wondering (and hoping for you) ....... can you get the incontinence pads on the NHS on prescription? Google says you might be able to. I know it doesn’t solve your problem but would help finances. 


I hope they get your bladder issues resolved - thinking of you x 

Hi shell, 

Sorry to hear.


My life has been pretty awful lately too Ive been living on bowl of yoghurt and bowl of soup every day for last three weeks. Had to drop working hours and taking codeine to be able to work. Then resting in bed recovering next day. Feel about 80 years old at the moment.


My bowel is having proctitis like symptoms. I have been bleeding, passing clear  jelly and mucous, continual rectal pain and feeling like continually need to go. I also have groin, lower back and lower abdo  pain. I find it difficult  to empty my bladder and went into retention when the pain was really bad. Ct in December showed that the radiation  has thickened my rectal tissue, bowel walls, bladder walls and abdominal walls. 


I went to gynae onc last week where they did a speculum but hard to visualise due to stenosis and thickened walls during exam and they did a pr where they can feel soft tissue growth rectally. Can be all from high dose radiation, causing fibrosis and weird tissue growth,  but they want to do a eua, cystoscopy and biopsies from rectal and cervical to make sure the cancer isnt back. If its ok, they will refer me through to chronic pain and colorectal teams.


Im wearing night pads continually as leaking vaginally clear fluid, which has been leaking since end of November  post radiation. Gynae onc and radiation are aware and think radiation changes, they have done swabs and examinations and apart from a fluid collection near my ovary on CT, nothing significant has shown up. Between that, the rectal mucous, some rectal bleeding and some urinary incontinence when i get bladder spasms. I feel quite gross at times. 


I'd talk to your specialists about your bowels. I have reduced bladder and bowel sensation and tone since the thickening with radiation. I really have to concentrate (and actually strain) to pee and the rectal tissue i have makes it hard the other way to know when i need to go. I just feel like going day and night all the time.Take care, i hope the doctors come up with solutions for you. Xx

I could get Catheters on NHS so I would like to think you could get pads. 

I can be operated on apparently to stetch the urethra as I strain to void wee. I had bleeding from the vagina triggered by sex this week. I  now have an MRI scan booked in to ensure the C isn't back. I want this journey to end! 

I don't suffer with my bowels but do get mucus. 


All my love 

I could get Catheters on NHS so I would like to think you could get pads. 

I can be operated on apparently to stetch the urethra as I strain to void wee. I had bleeding from the vagina triggered by sex this week. I  now have an MRI scan booked in to ensure the C isn't back. I want this journey to end! 

I don't suffer with my bowels but do get mucus. 


All my love 

Thank you Susan, I tried the nhs route, they came out an ‘assessed’ me and came back with a weekly allowance of 15 pads...(I use this many in 24 hours lol) xx


Oh Bexter it’s horrible isn’t it, I’m sorry to hear you are also having problems! I have just had a read up about Proctitis and yeah it pretty much sums up my symptoms so I will get an appointment booked with my consultant to discuss it. 

Wishing you all the very best in finding a resolve and you getting back on your feet.


Hope the scan goes well and the ‘c’ isn’t back, good luck with your op xxx

You too shell xx

Saw my consultant today whos been looking after me and my bladder, turns out that the radiotherapy has caused extreme damage to my bladder and there is no hope of repairing it so my only option going forward is to have a stoma bag fitted.  I can’t deny I’m absolutely gutted with this news and I’m going to need time to digest this huge change I am facing.  With a 2 and 6 year old I need to be around and living my life so here’s hoping that once i have the op in the next few months I can start to rebuild my life.  Just wanted to update you all that have taken the time to offer support xx 

I just wanted to say I really feel for you.  I have a three and one year old and I think in some ways they make all of this so hard (My only real fear is dying on my kids and not being there for them) but then in other ways they are a joyful constant distraction from the whole nightmare and  keep us going. 

I guess I just wanted to say I hope your op goes well and you are back to enjoying life to the full with your little ones soon  x x 

That is devastating news shell, hopefully going forward the surgery will allow better comfort and quality of life. Take care and I'm thinking of you. Xx

Hi Shell

Sorry you are having an awful time of things. I have stomas and I just wanted to say it’s a big operation and adjustment but you will get used to it. Your quality of life should actually be better than what you’re going through at the minute. 

I do have tips on how to manage the urostomy so feel free to message me anytime. 

Cara xxx

Oh Shell, what a journey. Wonderful to hear that Cara can offer advice. What a wonderful support we are to one another x