Interstim,yes or no,HELP

[sonjadb]

Hey all, I am ytring to decide about interstim, not for frequncy but for pelvic pain. I am currently doing Elmiron/lidocaine installations which have helped my bladder(last cysto my Hunners were healed Yeah me!):thumbsup:
But the pelvic floor pain is overwhelming,codine,morphine,B&O suppositories, not doing anything except make me type badly!
I have tried so many other treatments and nothing helps this part of my IC.
ANY advice, story, good or bad will help.
Thanks all
Hangin in by my nails, Sonja

[ICNDonna]

The interstim is not for pain.

The best advice I can give you is to do your research, look at the good and the bad about interstim --- then make your decision, knowing that is does not, except in rare instances, relieve pain.

Donna

[dyno]

Sonja,
Donna gave you the same advice I would give you. This is one treatment you really have to do the research on. Good luck.:kiss:

[codyryonwoodward]

Sonja

PLEASE do research before doing this. I remember when interstim was first started it was for urgency and freqency NOT for pain only. I had mine done in 2001 and mine has never helped with my pain.

Make sure if you do this that you can be helped even 4 or 5 yrs later if the device stops working or something is wrong with it. B/C there are not many places or doctors that do this right now. And just as few that can help you if you lose your insurance for some reason.

This device takes a while to program it right for you and when you flare you still are able to tell.

Just please do your research on this before you do it.

Patricia

[tigger_gal]

DIFFENTLY NO ...... Interstim is not for pain I have had the interstim now just over a year and it "HAS NOT" helped my pain..
All I can suggest is if you can tolerate baths to relieve pain and your heating pad.. some like ice over heat..
:kiss:
Brat

[littlebear]

Hi Sonja, I thought I'd say hi and chime in with what others have said (the interstim is not for pain). Have you checked out the pain management board on this site? I hope that you are able to find a strategy that helps you out some asap. Keep us posted! Best wishes, little bear

[JAMIEL]

Do you have pelvic floor dysfunction? Have you tried physical therapy? That is my next step. I am taking valium and two warm baths a day but my doctor wants me to start the PT for the PFD....IC & PFD are two seperate issues and need to both be addressed....

Jamie :kiss:

[ljl765]

I agree, my Uro told me "Do NOT expect pain relief w/Interstem.." and so we didn't do it..I can cope w/the frequency, it's the burning, stabbing, ripping and cramping, the "feels like sandpaper in there' pain that makes me nuts...but fortunately I have patches now and don't suffer so much at all..My hunner's would have had me blowing my brains out if I had to live w/it and nothing for pain..If pain is the biggest issue, interstem and it's side affects isn't the way for you to go...in my humble opinion :-)

[blue]

My Uro keeps suggesting the Interstim for pain. I don't feel good about it, so I'm not going to do it.

Everyone has informed me that the interstim isn't for pain. My doctor's words were did I want to try it for pain..........

This is the only thing that my doctor has said that has concerned me. He is very compassionate, and understanding.

[JAMIEL]

Blue...I was at a support group meeting recently and there was big a discussion about interstim...THe urologist that runs the group made it VERY CLEAR that it is not for pain but frequency!!!

Jamie :kiss:

[blue]

Thank goodness there were people here to advise me of what it's really for!

[tigger_gal]

ggggggrrrrrr, I would love to gather up all these uro's up that say interstim is for pain in a sound proof room and scream :loco: THE INTERSTIM IS NOT FOR PAIN< DO YOU UNDERSTAND!!!!!!!!!!! :tsk: ....... it just make my hair stand on ends that these uro's are pusshing a "frequeny & urgency" device for pain.... If you do get relief from pain from the interstim its an added bonus..... Please, remember in your research that the interstim is not intended for pain relief. I have the interstim, I have had it for over a year ,and, belive me it is not for pain.....
:hmm:
Brat

[sonjadb]

Wow, this is really confusing, I understand that the FDA has only approved Interstim as a frequency treatment, but just as with elmiron instills, also not FDA approved, do we have to go by the FDA rules about it?
Don't get me wrong, I understand no one is allowed to give medical advice about an un approved or off label use of a treatment. So I am wonderinf if this is what some of your comments were about?
My Uro. is great, without her help, well, I probably wouldn't be here dicussing anything at all :(
and yes she told me the "no pain" line as well. But I also know of patients who really have benifited from interstim and pain relief, so which do I chose. :headbang: . Well me and my family will pray about it and go from there I suppose.All extra prayers accepted!!!!

[SusanB]

PLEASE believe Brat, what she told you about the pain. I just had the surgery, and I can tell a LITTLE difference. Not enough to stop my pain meds.
HUGS
SUSAN B

[blue]

I brought this up to my pain doctor, and she said, it's not approved for pain, but has been successful for pain relief. She said especially the newer implants. I told her I wasn't interested, and she didn't push the issue.

By the way, there were a couple of posters on the wall advertising interstim for pain, and a handout.