What can I expect during the test stimulation phase?

[jensue973]

I am 31 years old and in mid January having the test stimulation phase for my IC..I have watched the video and read the phamplet sent to me about the procedure, but I guess it would help to talk to someone who has actually gone thru it..I am hoping that things go good...I have to admit I think IC has made me a 31 yr old into an 70 yr old woman...I have constant pelvis and extreme back pain because of my IC..I also have IBS which doens't help matters, so basically me and my bathroom are best friends..I was curioius to others who have IC do u suffer from fatigue? I haven't been diagnoised with chronic fatigue but I am always so tired and have no energy at all..Ever since I was diagnosed with IC about 2 years ago or more I just have no energy like I used to..I am really hoping this will work for me cause my doctor has had me doing the heparin instillations, elmiron, ditropan, etc and nothing seems to work...At times I have extreme pain and I just want a night with not getting up 3 or more times to go to the bathroom..I go about every 1-2 hours and I just pray that this works for me..If anyone can give me some friendly advice about the test procedure I would greatly appreciate it...Please email me if so booboos73@aol.com

Jennifer ( Peoria, Illinois)

[andcohen]

HI Jennifer :welcome:
Glad you found us. This might sound like a silly question but what is the Test Stimulation phase exactely???
I can also relate too have no energy all day. Sometimes I struggle to keep my eyes open ( which is not handy with a 2yr old) I don't know if it's all the meds or just part of IC??? which ever it sucks..
I hope you find lots of useful information here & someone can help you with your question
Take care
Andrea :flower:

[jensue973]

andcohen,

I meant that I am having the test stimulation for Interstim done in mid January and I was curious to those who are undergoing the procedure right now what I can expect...I know what u mean about having no energy and how fatigue is...I have 2 kids both who have ADHD and one who is Bipolar so just that alone is not easy onto of my IC condition..I hope someone can give me some tips they find helpful to make this as best of a situation with the test Interstim as possible....Thanks

Jennifer

[ICNJess]

I have had the Interstim since September of '03. I'll email you my InterStim story, it's too much to type right here LOL. For me, it was pretty painless and pretty easy.

[BLOORE74]

I have had my interstim since 2002. The test stimulation is easy. You have a wire sticking out of your back that connects 2 a beeper like box. It makes the stimulation go higher & lower. It feels like a heartbeat between your legs. That's the only way I know to explain it. It doesn't hurt, it's a constant pulse. When they set your settings they will try a few & they will ask you where you feel the stimulation & if it's comfortable. You get used to it really fast. I doen't even know it's on sometimes. It really helps the urgency & frequency alot. I am still on medical leave from work because of the pain, though. It helps it slightly, but not enough. I still take oxycontin 40mg & lortab 10/500 4 breakthrough pain. I hope this helped & hope your interstim works fo you.

[jensue973]

Thanks so much to those who shared their experience with the Interstim..Hope things go good...Best of luck to everyone...

Jennifer

[andcohen]

Jennifer
Thanks for the reply. Sorry for such a dumb question but at least now I know what you are talking about. Sorry I carn't give any help on that one but do wish you all the best with it. Boy it really sounds like you have your hands full with you children, I couldn't begin to imange what a day for you must be like. I only have a two yr old & with IC I can be sure that he will be the only one. :( I would have like another but know I wouldn't handle it. I guess some things are ment to be.
Take Care
Andrea

[Maribeth-rn]

I am also curious about the interstim. I am considering having it done. The meds haven't worked for me either. I have read a lot of info about it and it has scared me (side effects, etc). My pain is pretty severe and I don't know what to do to help it?

[yvette]

Maribeth, Interstim is not for pain and probably will do nothing to alleviate it. I'm not sure what you mean by side effects as its not a drug but a surgically implanted device. As with anything put in the body there is a risk of the body rejecteing as a foriegn object.

Perhaps look into different type of drugs, narcotic and non-narcotic (such as Elavil) can help manage that pain. Also many seek pain clinics where a program can be setup just for you.

It is definitely a big step and it is surgery (mine took 5 hours, rather than the estimated 2.5), so research it, research the surgeons and research it some more.

Good luck. :)