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GeorgiaH

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Posts: 14
Posted 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]
Moderator_Jen

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Posts: 960
Posted 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?


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GeorgiaH

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Posts: 14
Posted 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!
GeorgiaH

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Posts: 14
Posted Reply with quote  #4 
I have been on trimethroprim, nitrofurantoin, ciprofloxacin, ciprofloxacin and doxycycline and I think possible one more!
GeorgiaH

Registered:
Posts: 14
Posted 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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