dr thinks Interstem will help

[Gweniviere]

There is probably info about interstem on here, but I am so tired all the time to research at this time. The uro. thinks that the only thing that will help me with the pain right now is having this procedure done. I am a little skepical about it. cyso and hydro done a couple weeks ago-did not help at all. uro said have hunner's ulcers and an extremely bad ic bladder. I would appreciate any info-good or bad.
thanks for your help.

Gwen

[DebbieB]

Hi Gwen:
Welcome to the IC message board!!!

You can read about it at the web site www.interstim.com
I have my InterStim Implant now over two and half years and have had wonderful results with it!!
I would suggest that you have a well experienc doctor that does this procedure and if you able to talk to one of his patients that would sure be a benifit to you too!!
Also you do a InterStim trial first to see if it works for you before having the Implant done ok..
The surgery is self for the Implant is not really bad, you are in the hospital for two nights and I was able to do things the second week and out driving the third week, also depending on well you healed in this procedure!!
The trial is different with everyone, some find it painful and others did not, depending on how you handle it too!!

Good luck Gwen and I wish you well on what you decide to do!!
Just post away on the boards if you have any more questions ok!!!

Hugs: Debbie

[Ruth N]

Interstim is not approved for pain relief and most IC'ers who have the interstim do not get much pain relief from it. On the otherhand if your main symptoms are urgency, frequency it can do wonders for those symptoms.

In your case I would be especially skeptical about pain relief due to your Hunner's ulcers and extremely bad IC bladder.Interstim works on the nerves. It can't do anything for damage to bladder tissue.

So if you decide to try it please only try it with a traditional test trial and stay away from a staged trial. The last thing you need is unneccessary surgery.

[pwalker]

Gwen I to like you was very skeptical of the interstim. I was diagosed in May of this year. I have been fighting IC for at least 5 years. None of the medicines, hydro's or anything had worked. When my Uro suggested the interstim I asked him how many he had done? His answer was 3. I do not believe any were done on IC patients. I did the testing in August and had the perm. device implanted in September. I can tell you this was the best thing I have ever done so far. It was done on a outpatient basis and I was back at work after 2 weeks. Although I do not have major amounts of pain....I am the urgency, freq person with IC. But I was at my wits end when this was done. I felt if I did not do it, there was nothing left to me done for me. I wish you all the luck.

Patricia

[Teri]

I have had the device for a little over 2 years now.....it worked for 1 1/2 and DID NOTHING TO HELP MY PAIN. I just completed the 'staged' trial which is what most of the uro's are doing now and my trial was unsucessful....during that 2 week period, IT DID NOTHING TO HELP MY PAIN. We did go ahead and hook up the device and we are going to try to get it working again. Because of my second surgery I now have a new pain to contend with.....so there ARE risks. HUGE risks.
There are so many people being told that this device will help with the pain and there isn't one shred of evidence out there that says it will so I get SO angry when I hear a dr tell a patient that it will help with their pain. It was never intended to help pain.....it is intented for urgency, frequency and unobstructed retention. There are too many girls who have come and gone here on the board who have had this device put in with pain being their major symptom and most of them STILL have pain as a major symptom.
Please talk to another uro. Find a dr who is willing to work with you as a pain patient before you try something as invasive as this surgery is.

[Jazzy Baby]

I agree, my main problem is pain, and I just had the interstim put in. It is not helping with the pain at all, and it is messing with my menstral cycle. I was told that it would make me back to normal, and it has helped with the frequency a lot, but that wasnt my main concern, it is the pain that bothers me so bad. I should have researched it a lot more before I had it done. I wish I would have. Hope you do!!

[Gweniviere]

I appreciate all the help. It is nice to know that others truly understand what I am going through. The frequency is not as much the problem-though I do have that-med seem to help. I just have had this same nagging pain in my side for about 16 years and have had all kinds of surgerys. This May dx with ic. Sorry not really complaining just trying to find out what options I have besides med's that make me drowsy. I am
sure that my energy level is way down without the help of the medicene.
I am glad to finally have found the problem just having very few options at this moment frustrates my husband. I feel pretty sure that most all of you here have had similar experiences.
This may not be in the topic area if so please forgive me.

Thanks
Gwen