No announcement yet.

Trouble viewing posts on Cystectomy???/Rant about extreme pain

  • Filter
  • Time
  • Show
Clear All
new posts

  • Trouble viewing posts on Cystectomy???/Rant about extreme pain

    There are only 3 threads I see under bladder removal. Are there more which you need a password to view? I am not sure how the posts exactly work.
    I have had ic for 12 years and I feel this could be my last resort. I have an interstim which is not helping. I want to get my husband on board with me having a cystectomy or at least a urinary diversion for a while to see if the bladder will calm down. So researching other's stories is very important right now. Does anyone know what perectage are successful?
    I am immobile on weekends. Even being immobile, laying on the bed, I ache and ache SOOOO bad right now! It is a living nightmare. I just hope constantly that no one comes to the door. The neighbors do not get it. It seriously feels like no one does. I got a denial letter for my pain pills from my insurance yesterday so I have to pay for them now. I took a pill and a half and if I take any more it would knock me out. I do usually get some relief (not always) - like 4 hrs. a day from MS Contin where I do laundry and everything a quickly as possible!!!! I can barely move enough to shower at times though and cleaning my car went out the window. So I rinse it a but just went I can't see out the windows but it retakes ALL I have in me to do it like once every couple months in summer, less when it rains. I feel extreme pain and my brain hurts from getting no rest from the pain nerve signals. (I have a 9 year old now who I feel so bad for since he is stuck doing video games all the time due to my immobility. I did not picture raising him this way. 😔 I am grateful to have a child. It was always my dream. At the same time I feel that it is very important to assess you capabilities before having a child. I think I was blinded to a lot before I became a mom. ) I have had such a severe case from the beginning the posts on this topic never scared me but gave me hope. If it was to help, I would feel I wasted a Tom of the last 12 years.

  • #2
    Re: Trouble viewing posts on Cystectomy???/Rant about extreme pain

    Oops so many typos. I just wanted to get something out there because I am depressed and want so badly to have a life like I did in my early 20s before this or even a life I could do normal things in. On the last line I meant, if a cystectomy helped me, I would feel like I wasted a ton of time the last 12 years. I know it is not an easy decision. I hate hearing I am too young. I know it can't be taken lightly. I do not think that even needs to be said really. Who would take it lightly? I feel that a lot of people do it basically because it's between that and giving up completely.


    • #3
      Re: Trouble viewing posts on Cystectomy???/Rant about extreme pain

      If you go to the forum and scroll down, you'll find "Thread Display Options" --- under that is the place to set thread options --- I suggest "from the beginning."

      Let me know if you still can't see them.

      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool