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I'M SO CONFUSED ABOUT WHAT TO DO!!

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  • I'M SO CONFUSED ABOUT WHAT TO DO!!

    I WAS DIAG. WITH IC IN 1995, HAD 6 HYDO'S,ELMIRON,ANTI-DEPRSS.,DIET,BLADDER INSTILLATIONS, AND FINALLY THEY COULDN'T GET THE CATHETER IN FOR THE 3RD INSTILLATION. WENT TO A URO THAT IS SUPPOSED TO BE BEST, BUT 2 HRS. AWAY. SAID I SHOULD TRY INTERSTIM, AND HAVE RECTOCELE. SAID I SHOULD TRY INTERSTIM BEFORE FIXING RECTOCELE. SO THEN I MADE APPT. WITH GYN, BECAUSE THIS SEEMS SO IMPRACTIBLE TO DRIVE 2 HRS. FOR ALL THIS, AND WANTED RECTOCELE FIXED. NOW HE SAYS I HAVE CYSOTCELE, RECTOCELE, AND PROLAPSED UTERUS. NEED HYSTERECTOMY,AND BLADDER LIFT AND RECT. FIXED. SO NOW I DON'T KNOW WHAT TO DO. I AM AFRAID OF MAYBE MAKING THE IC WORSE WITH BLADDER LIFT. AND THIS GYN SAYS HE DOESN'T NEED A URORO IN THE OPERATING ROOM. AND I FIGURED I'D GET THE HYST.AND RECT. AND CYST. AND THEN TRY THE INTERSTIM. BUT I AM READING SO MANY HORROR STORIES OF HAVING BLADDER LIFT, AND HYST. AND ALSO OF THE INTERSTIM. I HAVE AWFUL TIME URINATING, HAVE TO PUSH SO HARD AND CONCENTRATE, AND AS SOON AS I GET UP FEEL I HAVE TO GO AGAIN. BURNS ALL THE TIME NOW. DON'T FEEL I AM EMPTYING BLADDER AT ALL. JUST FEW DROPS AT A TIME. USED TO GO REAL OFTEN BUT EASY, TIL AFTER ONE OF THE HYDO'S ABOUT A YR. AGO. I ASKED ALL THE UROR'S THAT I WENT TO(3 OR 4) ABOUT WHY IT IS SO HARD TO GO NOW, AND NO ONE COULD TELL ME. SO WHEN THE SPECIAL ONE 2 HRS. AWAY TOLD ME IT WAS PELVIC FLOOR DYSFUNCTION AND RECTOCELE PROBABLY CAUSING PROBLEMS, I WAS RELIEVED. NOW I AM SO CONFUSED AS TO WHAT TO DO. HELP!!

  • #2
    To Jooh, I also have rectocele and cystocele and IC. I had a hystorectomy when I was 27, now I have problems when I have to urinate. I am taking care of my I C first. I had a pain pump implant in February, it is working great. The other two problems, I will wait until I really have to have them taken care of. The pain pump is a blessing, it is by Medtronics, I had two stimulator trials which did nothing, the pain pump is the way to go. Good Luck to you whatever you decide to do, and may God Bless Us All.
    Sue

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    • #3
      Geez jooh~you got my head spinning :eek: Slow down and breathe. Can't handle it all at once I've had all the surgeries you are talking about and the only one that I would COMPLETELY rethink is the bladder suspension. Mine was in 1994 and I wasn't correctly dx'd with IC yet. Had I been, I probably would have made a different decission on that one. And, they could have a different way of doing it today. I had the bladder sling and it wasn't until after that surgery that my IC turned to pain 24/7. Before that surgery my sypmtoms were urgency, frequency, and unobstructed retention, which is what you are going thru. I do have the interstim and for 1 1/2 have year had GREAT success with it. I am scheduled to have the trial re-done next month because after 1 1/2 year it stopped working for me. The dr's aren't exactly sure why but it happened. So, we will try again.

      I've been where you are, trying to deal with all the medical problems at once and sometimes it's just NOT possible. My gyno did my vaginal/rectal wall repair so I don't see why you couldn't have that done at the same time as a hysto. My gyno was fantastic and did my hysto vaginally and that really helped a lot as far as my recovery time and I'm sure spared my poor bladder.

      I think that I would want all of the physical problems fixed before having the interstim because you could be having effects from drooping body parts and you need to make sure to get a GOOD interstim trial. Just my way of thinking, I'm NO PROFESSIONAL.

      Even after having all my my body parts repaired, I still suffered from what you are with the peeing and pushing and never being empty. The interstim did help me soooooooo much with that. Now, I'm back to either peeing non/stop or not being able to pee at all and I'm not real sure which is worse.

      Just slow down, take a breath and know that you can't do it all at once....your body just wasn't meant to go thru that much. Pick your dr's wisely. Don't pick them in panic. And, until you make a decision, come here and scream, hollar and yell. There is always someone ready to listen.

      tons of hugs~
      teri
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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      • #4
        JOOH-
        Please, please...take your time. Do NOT do anything you have any doubts whatsoever about. I think I would most definitely have the Hysto/rectum thing fixed. I am not familiar with the bladder surgery. Is there a chance the other sugeries could help the bladder?
        Just my Opinion, but there is NO WAY in the world I would have it all done at once. In order to judge the success/fail ratio, it needs to be the only thing you have going on. You need to be able to tell exactly how you felt before and after, and you will monitor alot of different things. If you had multiple surgeries it would be hard to tell "what helped what."
        With all surgery comes infection risk. I would heal up before having spinal surgery.
        Good luck,
        ICSF

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        • #5
          It sounds like you are feeling some doubts. Since you have two physicians giving different opinions, the best advice I can give you is to seek another opinion before having surgery.

          Sending healing thoughts,
          Donna
          Stay safe


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          [3MG]

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          • #6
            Hi my advise to you would be to fix the physical problems such as the cyto/rectocele prior to having anything new implanted. get yourself to the best physical condition you can so that you can tell if the interstim really is helping you or if it was your other problems being fixed.
            Don't hesitate to seek out second or third opinions til you feel secure in your decisions.
            Annette
            Annette.

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