'Slough' in bladder

Hi Julia194,It’s good you are clear of tumours.I had Interstitial cystitis for years before cancer and used to get this often after cystoscopies.I had a lot of red patches too.I hope your cytology is clear.Love Jane x

Hi Jane! Oh thanks for that. You have made me feel better! There is a possibility that I may have had interstitial cystistis for years. And still have it. And it's very interesting that you shared the same experience. Can I just ask Jane did you get put on long term antibiotics during your first experience of interstitial cystistis? I am pushing for that. In between treatments. Thanks. Lv J x

Years ago they were talking about long term antibiotics but that didn’t happen.I can’t remember why.I never got urine infections at the start but the bladder got so damaged over time I got them constantly in the end.I hope you get the antibiotics if they will be of help.x

Hi Jane, so sorry to hear they didn't do that for you - and you ended up on that path. I was very much told my infections caused the cancer. Similarly I think I def started that way like yourself without the obvious inections. That changed. I think the fact that so many infections are non bacterial and the gp tests only pick up bacterial-most def suggests we need more awareness at a GP level. Thanks again, xx

And Jane - also just wanted to say I read your story and what you have had to go through and overcome (and so sorry to hear about your mum)...Big hugs, lv J xx

I now have neo, so a bit different, but at an ultrasound they commented on 'sludge' at the bottom. I guess it's not uncommon for any debris/mucus/whatever to sink in the bladder & possibly not get ejected with urine. 

Thanks.Do you get much bladder pain ? They thought I had lupus and I had tests for it as I had the Interstitial cystitis and Pericarditis which are both common with Lupus.The tests were negative but they said it was auto immune related.Love Jane x

Thanks for that info Teaswill! By the way - if you don't mind my asking - how do you find it having a neo? This was mentioned a while ago as a potential future option if the cancer kept reaccuring. Lv Jx

• Hi Jane! I have pretty much permanent (apart from when on antibiotics) lower abdominal pain. Thanks for that - I am talking to the consultant at the end of feb so will mention those as well! Lv J x

I’m really sorry to hear that.I found cutting out foods high in histamine helped with the pain.Diet doesn’t work for everybody but it is worth a try.I used to belong to the Cystitis and overactive bladder group online and they had some useful advice and support.Love Jane x