Announcement

Collapse
No announcement yet.

How did you find your surgeon?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • How did you find your surgeon?

    I'm looking into removal if the pain stim or pain pump doesn't work, but my Uro isn't supportive. I'm at the point that I realized I need to do this on my own apparently.

    How does one find a surgeon? I belong to a Urostomy group on FB and met many women who drop me their surgeons name. Do people just refer themselves?

    Does the IC Network have a list of preferred surgeons?

    If you had a cystectomy who did you use? Please pm me.

    Thank you!
    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    Symptoms:
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Failed
    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

  • #2
    Re: How did you find your surgeon?

    I am sorry your having to deal with all this. From what I have learned, most urologists will not support bladder removal for IC unless the bladder has shrunk to a tiny size and can only hold very little urine. I know I broached the subject with my urologist back a year ago and she was totally against it. She told me the outcome is usually not good and there are always complications afterwards, some very serious. I am not sure if she just told me this to scare me or not. I am pretty sure you are going to need a referral to see a urological surgeon. They mostly deal with Bladder cancer patients. If you find a surgeon you would maybe have to ask your primary care doctor to give you a referral. I think it is horrible that urologists are so quick to invalidate our pain and steer us away from surgery. I mean I get it is a very very serious surgery and that there will almost definitely be complications involved. However, I also think when a person with IC is looking into such a major surgery, well they must be seriously in pain and miserable and nothing else they have tried is working for them. I think surgery should be an option for every IC patient when nothing else is helping them. I hope you find a good surgeon who will be able to help you. Hang in there.














    Originally posted by MissM View Post
    I'm looking into removal if the pain stim or pain pump doesn't work, but my Uro isn't supportive. I'm at the point that I realized I need to do this on my own apparently.

    How does one find a surgeon? I belong to a Urostomy group on FB and met many women who drop me their surgeons name. Do people just refer themselves?

    Does the IC Network have a list of preferred surgeons?

    If you had a cystectomy who did you use? Please pm me.

    Thank you!

    Comment


    • #3
      Re: How did you find your surgeon?

      Your primary care physician may be able to offer some suggestions.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

      Comment


      • #4
        Re: How did you find your surgeon?

        I'm also curios about removal if I don't improve......I'm also on a urostomy fab page and it seems like so many of the people who have had this procedure are from England. Wonder why? And they seem like majority of them are doing great and happy they did the surgery.
        Current meds/treatments
        Elmiron 300mg,Valium vaginal 10mg 2x per day, rapaflo 8mg, probiotics, coconut oil,pelvic floor therapy.

        Pfd, Retention,IC

        Comment


        • #5
          Re: How did you find your surgeon?

          Yes, we may be in the same group! Most are from the UK. I think their list of treatments are shorter over there, it seems our list goes on forever here. I've talked with many over there who are doing much better without a bladder. Why do our physicians feel our lives don't matter? That is my biggest source of confusion, why doesn't my life matter?
          Health Issues
          IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
          Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
          Symptoms:
          I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

          Failed
          Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

          WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
          Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

          Comment

          Working...
          X