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Ongoing bladder problems currently have spc fitted, needing advice on bladder removal female asap!!

Posted , 3 users are following.

audigem
audigem

I have ongoing health problems which are gradually getting worse as the days go by. I had Botox in my bladder and it's basically broke my bladder. Due to other health problems I was unable to isc and had a spc fitted. The pain is excruciating as the doctors 'think' I have fowlers syndrome. They haven't diagnosed me properly but want to remove my whole bladder and put a stoma in place on the outside of my tummy. I would like to know what to expect in regards to appointments and is it quite straight forward meaning I have a consent appointment and then a pre-op and then one more just before op and then go in for the surgery?

Any help would be lovely

Xx

1 like, 4 replies

4 Replies

  • hope4cure
    hope4cure audigem

    Posted

    I have urinary retention for years. I was prescribed a medication to relax the sphincter muscle. It has helped me a lot. Sometimes I needed to use a catheter before meds. 

    have you tried any meds ?

    i am sorry to hear that Botox has developed the injury to ur bladder.

    are u in the US. 

     

    • audigem
      audigem hope4cure

      Posted

      Hi thanks for replying. They originally thought it was detrusor instability where the sphincter muscle doesn't relax. I have tried numerous amounts of medications and every treatment available to me on the nhs but none of them helped me they just made me worse. My bladder and urethra are in constant spasm because the fowlers is a disease what makes them basically hate each other and so they fight. I'm currently on Oxybutinin 3 xaday now which is highest dose for them. They did have a look into sns but I'm not a suitable candidate because of my spinal problems. Now they will be removing my bladder which I'm more than happy with I just wish they would hurry up.
    • hope4cure
      hope4cure audigem

      Posted

      Ok I understand what has happened in your case. You would like it removed. I have been told by many urologists that in women bladder retention is not always clear. In a males case it's usually due to swollen prostate glands. In females there is nothing to obscure the flow. 

      I suffer from back and nerve condition so the doc thinks my issue is more from nerve damage. I was in a bad accident hit by a drunk driver caused nerve damage to my back. Occasionally I must wear a Foley Cath.

      HOPE

  • nic76621
    nic76621 audigem

    Posted

    Hi have you been on the COB site.  It is a website for people with serious bladder problems.  It has really helped me. They have loads of information with people who have fowler so and are / have been in a similar situation to yourself.  I would certainly recommend them.  You can also speak to people direct.  

    If you need any more information please let me know.

    i really hope you manage to get things sorted and able to speak to someone who is going through what you are, before you have your operation.  Please keep me informed.  

    I am currently being assessed to see whether I am suitable for SNS, if not I will be going through a similar thing to yourself.

    i wish you all the luck in the world

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