Info on Interstim please

[PenguinK]

I am set up to get the Interstim in Late March. I am scared to death! This is a foreign electrical thing going into MY body! :shake: I don't like that idea.

I have been told that I have IC, unstable urethra, dropped bladder, possible endometriosis, and frequency with leakage.

The pain has decreased CONSIDERABLY from Sept. when I first went crying and crawling to the Urogyn. I am taking Elmiron and flomax daily, with Pyridium Plus for pain as needed. I have weaned off of the P+, which I was taking every 6 hours in the begining. Now, I only take it 1-2 a day if I really feel I need it. I even went all last weekend without it!! :)
I use Ice pacs for the Urethral pain when it's really bad, and am following the diet pretty well. I think giving up the caffeine and chocolate were the biggest step to less pain/ frequency.

What I am trying to ask, is what is the Interstim for?? I have the DVD and a brochure of testimonials that seem to tell me it's for the frequency problems. If these are controlled by the IC diet, and the medications, do I still need the Interstim???
I realize my doctor is the only one that can make that judgement, but I want to know how to approach this with him. I don't want to jump into anything that serious without knowing ALL of the facts.

Thanks,
KK

[dyno]

KK, Interstim is suppose to be for frequency. Some people do get the added benefit of pain relief but that should not be the reason to try it. When approved by the FDA it is suppose to be a last resort treatment when all other less invasive treatments have been tried and failed. Meaning that diet, oral medications, installations etc. have failed to help.

You need to go out to the main board and look at the Interstim boards. Go to the bottom of the boards, expand out the number of days till the beginning and read all you can about the pros and cons of this treatment.

You also need to remember that things can go wrong with this procedure and if you are one of the ones who this happens to, you have to know in your heart and soul that you can deal with more possible problems. You have to be convinced that you have no other choices and are ready to proceed hopefully to a good outcome for you.

You are the only one who can make this decision and yes your Dr. is part of this but it is YOUR body and the Dr. is not the one who has to live with it and the problems if you are one of the ones who has trouble. You need to talk to your family about this and make your choice based on how you feel after weighing everything you have read and all the people you talk to.

I read in your posts the questions about necessity and based on what you have written I feel this is a valid concern. Please do your homework on this and don't ever hesitate to see another uro for a second opinion or stand up to your uro and say no if you are not ready or if you don't think it is the right thing for you.

I wish you the very best in whatever you decide and we will answer whatever questions we can for you.

[ICNJess]

Hi Penquin,

I think Jolene made some valid points. I have the InterStim, if you would like to chat sometime about my experience and why I went through with it, PM me.

The InterStim is only used as a last resort treatment in IC. I was voiding 40+ times a day before my stim, and had nasty urgency and bladder spasms, so for me, it was a good choice, but if you are doing well with your IC, I wouldn't suggest going for the InterStim, but this is a choice you need to make.

[dancemomof2]

I also am available for chatting about mine. i just got it and LOVE IT. I have went from peeing 50-60 times a day to about 25. The surgery was a breeze and I will gladly tell you about it.

[ICNDonna]

Are you saying that you were diagnosed with IC in September of this year? If so, and if you've only been taking Elmiron for about four months, it might still help you. Elmiron does take up to six months or longer to be effective.

I believe you are wise in wanting to fully explore carefully before undertaking a major surgical procedure. Some people have found they have excellent results from interstim; others have had real problems and have ended up having them removed.

At any rate, my suggestion would be to go for a second opinion to a urologist who is not in practice with your current physician. And, by all means, talk to people who have experienced interstim successes and also those who have had problems before you go for this. You can always delay your surgery if you need more time for research.

Whatever you decide, I wish you success.

Sending gentle hugs,
Donna

[Betsie]

Hey KK,

It sounds as if you are making progress with your treatment so far. And like Donna mentioned, the Elmiron alone can really be a more apparant success for many after 6 mos., at least.

I am a little confused as to the reason you are being scheduled for the interstim. It sounds a little premature to me, but that is only from what I picked up in your post. Please get lots of advice before going this route. I really have no personal experience, I just know it is as said before more of a last resort issue for frequency. Not pain, as I think you know.

There are plenty of peole here to discuss this with, the whys and why nots...i would take advatage of speaking to the many people here who have been through this and get more info from them.

Good luck with your progress, no matter how it's achieved.

[ktrncl]

I myself had the first stage innerstim Friday and yes it is suppose to be for the frequency of urinating but, I was told that it would not cure the pain of IC. That you would have flare ups they could not cure that but for any IC patient not going to the bath room all the time is a real big relief. You can at least get back to normal in some form. And actually, not having the feeling that you have to go to all the time even when you can't is such a relief to me. I really recommend anyone going through urgency/frequently of urinating should consider to look up any information they can about this device it may actually help. Has anyone had stage two and can give me some idea what I'm up against. THANK YOU