Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I am FINALLY having my Interstim removed due to severe pain since it was implanted.
My question is has anyone gone through this? What was the surgery like? Did you remove the leads as well as the unit? Do you have any long term side effects? I already have permenant nerve damage from the unit.
Thanks for any suggestions or ideas you may have.
I AM SO SO SCARED for this surgery. The doctor doesn't want to do it to begin with and I finally after months of begging in pain got him to agree.
My question is has anyone gone through this? What was the surgery like? Did you remove the leads as well as the unit? Do you have any long term side effects? I already have permenant nerve damage from the unit.
Thanks for any suggestions or ideas you may have.
I AM SO SO SCARED for this surgery. The doctor doesn't want to do it to begin with and I finally after months of begging in pain got him to agree.
deleted_user
sorry, what is aninterstim??
deleted_user
Sorry I should have explained. It is like a pacemaker for the bladder. It is made by Medtronic. It has been the biggest nightmare for me!
deleted_user
I've never ever heard of that, or even been offered that as an option, so sorry.
deleted_user
Now I'm getting cold feet about the interstim. I really want to have it done but wht's the downgrades of it? Has it really damaged ur nerves? How can u tell if it damaged? What's the side effects? Did u get any relief from frequency and urgency? My only issues are freq. and urg.
deleted_user
Hi, I had my interstim removed becase of severe back and leg pain. I know have chronic low back pain as well as numbness and weekness in my left leg and foot. I am very scared. I dont' know what my prognosis is.
deleted_user
eeeks scary!
deleted_user
I was considering getting Interstim for IC but after reading your post, I have decided against it. I am so sorry that it didn't help you and that it caused you more pain. I am praying that your surgery goes well. Please keep us posted. - Laura
KendraRuth
Sounds scary.....I have never heard of this....I will be praying that everything goes good.....Best of luck to you!
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