I have been diagnosed with severe IC, I receive 1-3 coctail heparin caths per wk, I have been on Elmiron for 11 months. My problem is uresid, prosed isnt working on spasm pain urethra, it's so bad my body often kicks out the catherter then putting it backs in causes rawness and more pain. I heard of a DR in PA who mixes topical pain relief just for this, but cant find anyone in Dayton OH who can make any of these for me. Do you know of a topical gel or where I could get the creams made? My urologist willing to write script but no one knows where to get it done?
Please I want to get better!!!!!!!!!!!
All the above comments are great suggestions. The new standard inoffice bladder instillation for IC is Lidocaine instillation with bicarbonate solution. The lidocaine is a local anesthetic and the bicarbonate allows the lidocaine to penetrate the bladder wall to get to the bladder nerves. Lidocaine without the bicarbonate solution has only minimal bladder wall penetration and very short duration of action (minutes to an hour). In my clinic if 5 daily instillations is effective in treating the pain, I teach patients how to instill the solution themselves and give them a script for the supplies and solution for at home use. Good Luck.
Have your doctor write you a prescription for Lidocaine 2 % Gel ( called "Urojets")...this is a cartridge with topical Lidocaine that is injected directly into the urethra. Very commonly used by urologists as a local anesthestic both in the office and in the surgical setting, and I found it to be extremely helpful for IC. I couldn't have survived without it. I had the same trouble with the spasms being so bad that the cathether would shoot right back out while trying to instill the cocktails. The Lidocaine Urojets were a lifesaver! They relieved the painful spasms within a few minutes, and sometimes the pain was held at bay for 30 minutes to even a few hours. Could not have gotten by without them. They are manufacturted by IM (International Medical).
P.S. I have had IC for 9 years (used Lidocaine for last 4 years) and had surgery for IC this Oct 6th...have been pain-free for 6 wks! Don't give up hope.
There is a support group for IC 1-800-ICA-HELP Its a group around the country and they have local support groups,, I attended one for awhile we had many speakers and alot of information it was very helpful. If you have further questions you should call them and they can usually direct you to a local support group for answers
i have been on elmiron for four yrs. it works for me i do have flare ups around menst. cycle. i had my gallblader out 5 days ago and my ic is so bad. i had to go off my elmiron for a mth. because it is a blood thinner so with the surgery i was off it. i'm back on it but it takes awhile so he put me on prosed. not any better after 4 days. so i not taking that it seems worst with it. and they didn't cath me during surgery. good luck to you
First off I live in the Cincinnati area and belong to the local Support Group; in fact I just took over their email notices. The next meeting is January 27th in West Chester, probably within 50 miles of you; we'd love to have you.
Second there's a "Urology Center" that provides two different IC cocktails. One is Lidocaine 2 % Gel, Marccain, Kenalog and Heprin. The second is 1% Injectable Lidocaine, Sodium Bicarbonate and they add your Elmiron. I've had both extensively and found them to be a tremendous help. You'll need to see a doctor in The Urology Group. Some of the doctors are better with IC than others, read their bios on their website and look for one the mentions female urology not prostrate surgery. Here's the URL to their website http://www.theurologygroup.cc/index.asp.
Lidocaine 2 % Gel can be purchased in a tube. I frequently use it for application at night to calm my burning. This form can be mix for cocktails, it's what the the urology center uses.
My doctor at the Urology Group would not allow me to self administer the IC cocktails, so being the bullhead that I am, I found one who would. In fact I catheterized myself for the first time today on my own. I'm quickly finding out what hoops to jump through to get the ingredients and supplies.
I'd be more than happy to provide any additional information or assistance you may need. Cincinnati is a whole lot closer than PA!
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