unresposive IC????

[ad8123]

Okay maybe this is odd, my pain md said I have an unresponsice case of IC. I have not responded well to Elmiron, Elavil, Paxil, Cystoprotek and NO pain meds work anymore. I have pain all the time mostly in the lower right back. Anyone else like this? I am having a hypogastric plexus block done next week (nerve block). I am a bit nervouse am I a wierd IC'er?????

[XoChelsey03Xo]

I have not yet been put on any medications to help treat my IC yet. I go to the dr. next week. That is really strange that your body rejects all the medicine. I hope mine does not do that. Everyone is different. I'm sure there are others that don't do well with the medicine as well. I hope your hypogastric plexus block goes well. Chelsey

[Katrina]

I think everyone has IC differently since we are all different....yours maybe more different than usual....but don't feel alone we all feel that way sometimes. Mycase of IC does respond to meds....but than progressively gets worse...It is like meds work in me for a time.....but have a very big battle to fight in me. Which is odd since most people once they start treatment get better. Anyway Angela....hopefully you will be able to find a way to feel better regardless of all the things that haven't worked.

:grouphug: :grouphug: :kiss: :kiss:

[Kathi]

Just keep trying different things. As Katrina says, we are all different & different things work on different people. I hope you find your "magic" help soon. Hugs, Kathi :smile fai

[ad8123]

I am feeling better about the procedure and I am sleeping now because of the neurontin! The first real med to work. I am even able to skip my daily naps! I am just so excited about that, that the nerve block seems to be a wonderful oportunity. If I can sleep, and continue to keep frequecy low for an ICer with diet, prelief and atarx and the nerve block gets the pain bearable then I will be just golden. And ready to loose my 30 elavil pounds! Thanks for all the support and encouragment. I am keeping a positive mind set and I am sure Huricane Jean is going to miss us (God willing) and all will procedue as schedules next week. I let you know how it goes. If it works I will tell the world!

[kelly McC]

My IC specilaist said I am her only IC patient that so far has been unresponsive to treatments. I was a bit upset @ first and actually apologized thinking I was a tough patient somewhat of a bother. She quickly assured me it may be a tough road but she's not giving up. And I had nothing to be sorry about.She teaches seminars and has said several times she brings my case up in hopes for some input on where to go next.
I have not giving up hope and continue to search for my right treatment plan.
I wish you the best with your procedure and hope it helps you.
Take care,
Kelly

[ad8123]

Kelly thanks for the encouragement. I am very lucky to have some real good and experienced (if there is sucha thing) IC doctors even if they are in Tampa (a 35-45 min drive). My uro has been treating IC for a little while but had many patients and is in contact with the IC patient advocate so he is full of new info. He is also very supportive of what I want to try and what I can not because insurance will not cover it (ie physical therapy and tens- I wanted to do both but even with the added diagn of PFD they do not cover it at all TENS or very little the therapy). My pain md is right on board to he knows i am not responding to pain meds and do notlike the way they make me feel so we are trying new things. I actually feel very lucky today ( I am having a great day despite pain, the neurontin is really helping me to sleep and thus I feel sane again). Thanks for your reply. I'll post after the block to let everyone know how it goes (if the hurricane doesnot post pone it )

[ICLori]

I'm alot like you, Angela - only Neurontin made my bladder pain way worse. So I can't take that either. Basically I was told my only options at this point are Interstim and bladder removal, and they really don't want to do bladder removal on me, so if Interstim doesn't work then I guess they are telling me just to live with it.

Blessings, Lori