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Posts: 15
Reply with quote  #1 
Hi all,

I am really panicking as I have just had a cystoscopy with dilation and there were two large lumps in my bladder wall. I have been asked to go back on Monday for the nurse to show me how to self cathertise. If I'm honest If had issues for 6 years now and I am worried that for so long being dismissed by the gp's and only finally finding a good doctor that this hasn't done me any good and it's a little too late. I was told I do not have an infection but have been on at least 6 different types of long term antibiotics for 6 years which has made me feel really rough at times with little relief so now that seems such a waste of time and money!
Obviously lumps makes you very scared of the outcome so the doctor said he will look back at my ct scans.
I am also worried that I am only 23, this is my second dilation and with now self catherisation 2 times a week he said is going to do my muscles no good and I don't want to be incontinent by the time it 30!! Anyone else had a similar experience ? I really don't want to self catherterise [frown]

Posts: 973
Reply with quote  #2 
I'm so sorry you are suffering so much and it must be very scary for you right now.

Please may I ask a couple of questions so I can offer the correct advice?

What are your symptoms
What tests have you had done
Have you been given a diagnosis
What treatments/medications have you tried?

In regards to having lumps in your bladder these could be hunters ulcers which are an indication of Interstitial Cystitis. Did they do a biopsy of the lumps?

On Wednesdays Bladder Health UK has a helpline run by a qualified bladder nurse. Perhaps you would find it useful to speak with her about the long term effects of self catheterisation?

Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Posts: 15
Reply with quote  #3 
Thank you so much for your reply. I have a letter in the post for a MRI so I should hopefully know soon what is going on. My symptoms have changed since I first started having issues. The first time I ever had issues was cystitis when I first came sexually active. i had 5 bouts of what they said were cystitis but then the anti biotics had little effect and I would feel it in my kidneys to the point where I have been to many & e many times.
I have had constant burning in my urethra when passing urine, frequency, struggling to force urine out ( I have to push down on my stomach), cloudy smelly urine and when at its worst, blood and a lot of pus cells.
I have not experienced the 'normal' urge to go for a wee in many years, instead I become bloated and feel sick and that's my que to go to the loo. the past 3 years I have been unable to drink anything other than water to control symptoms. I had a weak tea at the beginning of the year and the pain in my kidneys was unreal but I have NEVER had a sign of infection from urine tests but again like multiple times was provided with a long course of antibiotics ( most 6-12 month courses).
More recently there has been high level of pus cells when I have had terrible back aches but if I am honest I am so used to the pain and that's why I pushed for another dilation as it gave me a little relief until I began having sex and drinking anything other than water.
Throughout the whole time of being with a urologist I have only had urine samples, one ct scan, ultrasound, and just had my second dilation and cystoscopy.
I feel very upset that it has taken this long to find something wrong, especially because I have been fobbed off with antibiotics for so many years when there has been no sign of infection [frown]
I will definitely call the nurse thank you!

Posts: 15
Reply with quote  #4 
I have been on trimethroprim, nitrofurantoin, ciprofloxacin, ciprofloxacin and doxycycline and I think possible one more!

Posts: 15
Reply with quote  #5 
The lump was smooth and round and looking like the size of a gulf ball! It looks like two lumps in one and was in my bladder wall. Nothing like any of the pictures that I have googled which I know I should compare it too
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