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Bladder Removal

Posted: Mon Jun 01, 2020 2:12 pm
by LaSalaAzul19
I'm 28 years old and have been suffering from painful bladder syndrome/IC and over active bladder syndrome from childhood although wasn't diagnosed until about 10 years ago. It affects every aspect of my life and really holds back my progress with important and every day things. I've had enough. I am serious about having my bladder removed. How do I go about this? From what I've read online, people usually have to subject themselves to all sorts of different treatments before they are deemed a candidate. I'm just not interested in putting myself through any more pain or stress over this condition. I already have installations and have taken a cocktail of different medications and analgesia. Right now I'm just taking Cimetidine with no effect.

Thank you for any insight.

Re: Bladder Removal

Posted: Tue Jun 02, 2020 12:53 pm
by Mr Chris Harding
Sounds like you need a consultation with a functional urologist and stoma specialist before you make a decision regarding bladder removal. You are correct to assert that bladder removal is usually a last resort treatment and you need to discuss all options first.

Re: Bladder Removal

Posted: Mon Jun 08, 2020 4:04 pm
by LaSalaAzul19
Thanks Chris, how do I go about this? At the moment I am under urogynecology at St James Hospital in Leeds. I keep asking the question but am told I need to finish the bladder instillations first before I can see the consultant Dr.Rogerson. (these are usually ongoing so I don't know what they mean by 'finish') I have had multiple procedures and been on every sort of medication recommended for this condition and none of it has been very helpful. The bladder installations are the most effective out of everything.

I also keep contracting UTIs now that the instillations have been stopped due to covid. I usually start with them at night which means ringing 111 and answering the ridiculous list of questions to try and get antibiotics. No I am not bleeding heavily from my eyes or nose thank you. I had a telephone consultation with an out of hours GP who really did not want to prescribe me more than 3 days (ineffective) of Nitrofurantoin and he was adamant that I needed a microbiologist to look at my sample of urine to see if I had an embedded infection. From what I have read, this would require something a bit more invasive than a urine sample to get a culture from my bladder lining, am I right?

Re: Bladder Removal

Posted: Thu Jun 11, 2020 2:09 pm
by Mr Chris Harding
I would advise that you request a review appointment with your current Consultant and explain that the instillation treatment is only helping a little bit and you have significant residual symptoms. Explain that you would like to discuss bladder removal.

With regard to chronic UTI (which I think you are referring to) this is a possibility and a 3 day course of antibiotics is unsurprisingly inadequate. Maybe talk to your GP about non-antibiotic options such as Methenamine Hippurate?

Re: Bladder Removal

Posted: Thu Jun 11, 2020 2:50 pm
by Mr Sachin Malde
Sorry to hear you are having such difficulties with your bladder. I agree with Chris that trying some options to treat possible chronic UTI would be a good idea to discuss with your Urologist in the first instance, before considering the last-resort option of bladder removal surgery.