Advice please

Hi CSJ , sorry to hear about your mum having a bad time with this. I dont have personal experience of this kind of pain, but wondered if the urology dept or if she had a cancer nurse specialist may be able to help. maybe even ask 111 or the GP ? I hope you can get some help for her soon and she begins to feel better.

Hi CSJ,Welcome to the group.I’m so sorry your mum is in so much pain.You can get pain from the procedure and then if you have an infection on top that will make things worse.Some infections cause more pain than others.The main thing to help is to keep drinking even though it hurts.Most people on here find lemon barley water helpful.If you don’t drink enough to keep the bladder flushed out then it becomes more irritated and that causes pain.I used to find a hot water bottle over the bladder helped with pain.It is also worth asking to have the urine tested again after the antibiotic course is completed.If your mum picked up this uti in hospital then it may take more than one course to get rid of.I got a rarer type of streptococcus after a procedure and needed 3 or 4 courses to cure it and the pain was awful.I hope your mum feels better soon.Jane x

she has emailed her CNS and not heard back. Her GP was as much use as a chocolate teapot when my step dad called to ask advice and told her to go to A&E if things don't settle. I am in Northern Ireland and sadly we don't have 111. I am just feeling a bit useless and wish I could do more to help her right now. Thank you Angela and Jane xx <3

Sorry you haven’t had any help from the gp or nurse.Things should settle but do get medical advice if there is no improvement.It’s a vicious circle really as you are in pain and don’t want to drink much as you know it will be painful.But then if you don’t drink enough the urine becomes too acidic the bladder lining irritated and the pain worsens.Some cystoscopies are tougher than others too.It depends on how gentle the person doing the procedure is in putting in the scope.Let us know how things go,we are all here to help and for support.Jane x

Hi CSJ, sorry to hear about your mum's pain. I totally support Jane's advice that your mum should drink as much as  she can to flush out the bladder and urethra. At least two litres a day in addition to tea and coffee. I had a cystoscopy yesterday and because 12 weeks ago I had a hip replacement I couldn't let my right leg open as widely as usual so the camera tool thingy scratched me as it was inserted into the urethra. Ouch!! I'm hoping it won't be infected but it is certainly very sore. I'm knocking back the 2 litres of lemon barley and taking paracetamol 4 times a day.  I don't think A+E are worth the hassle of hanging around simply to get higher level pain meds. Why can't the GP prescribe those..it's nothing specialist just stronger pain relief? I'm afraid I sometimes take Ibuprofen as a last resort but I know the doctors are not keen because of the potential side effects (bleeding, stroke etc) Maybe your mum will have to phone the surgery herself? Fingers crossed tomorrow is a better day for your mum and me. Best wishes H x

Thank you all for the support she is drinking plenty well over 2 litres, The gp has been reluctant to give her any stronger pain relief  she has had cystoscopies pretty much 3 monthly for the last 6 years and has never had pain like this after one. We have managed to get an appointment with her consultant this afternoon so hoping things start easing for her shortly x

I hope you get somewhere with the consultant.Love Jane xx

Hi CSJ, glad you've got your mum an appointment with a consultant. Let us know how she gets on Hx

Hi the appointment went well the reason she is in so much pain is she has 2 prolapses one in the bladder and other vaginal wall which need repaired. she was in a car accident 6 months ago and broke both her sternum and coccyx and this is when the prolapses also happened. The great news is the results of her recent cystoscopy came back as clear he had taken biopsy's from all over the bladder and urethra there is a lot of inflammation in the bladder but again they think this is from her prolapse. He is going to write to her GP and make sure they are giving her proper pain relief until she has the repairs done she is having to go private for the operation as the wait is almost 2 years on the NHS and its causing her a lot of issues with bad utis and kidney infections. Not ideal but so much better than the cancer being back.

Thank you for the advice everyone I have been lurking on this forum for years since her first diagnosis and you are incredible people offering support to others when you have had your own things to deal with.

Hi,Your poor mum how painful for her.I’m glad something will be able to be done to help.No wonder she has been in such severe pain.I hope she doesn’t have to wait too long for her operation.Fingers crossed strong pain relief will help until then.Let us know how your mum gets on.It’s great that the biopsies were clear.Love to you both.Jane xx