Am scared

[Kirs10]

I went and saw my IC dr today and he was not happy that I didn't have my interstim turned on, but it doesn't make a difference to me whether it is on or not. Anyway he says that we have tried everything else so the next step is going to be DMSO treatments. These scare me alot, I am not sure that I am completely understanding them or the reason. I have seen on this forum that some people really hurt really bad when they get it, and I am terrified that I am going to leave there in more pain, I couldn't handle that...really I couldn't. So is there anyone out there that has had done the Dmso treatments and have had good or bad lucky that could tell me what to expect from this process. I would appreciate any and all information that you could give me.
Thank you,
Kirsten

[IcyAngel23]

I did two DSMO treatments and stopped because it caused more pain and issues than it was suppose to help. It burns going in and while it's in there. If I could go back that would be a treatment I'd never try. I had an interstim put in and had alot of problems with it and refused to turn it on. After a year I had it removed.
Good luck to you

[ICNDonna]

There are other instillations I suggest you try first. DMSO can be painful. When I first started DMSO instillations, after the first few I was ready to say no more --- then one morning I woke up and realized I had slept through the night for the first time in many years. That was enough to motivate me to continue. After the first series, I went to a monthly schedule and DMSO helped me for several years.

My suggestion is to try rescue instillations first. Some are doing a combination of heparin, lidocaine or marcaine, and a sterile water solution.

Donna

[NancyB]

Dear Kirsten -

I agree with Donna that there other things to try before DMSO.

I read some of Lee Read's posts about her Treatment Regimen for IC Relief and thought it might help you. Perhaps you would want to try it. Her original regimen was the following:

"... I instilled 8cc of 2% Lidocaine, 4cc Sterile water, 3cc Sodium Bicarbinate mixed with 1 Elmirion capsule. I did this 3 times a day for for 3 months then 2 times a day for 3 months then 1 once a day for 6 months total 1 year. I haven't taken anything since July and feel great. I had a real bad case of IC according to DR Parsons 50+ urinations a day, Hunners ulcers, lots of pain."

Dr. Parsons is a noted IC urologist at the University of California San Diego.

Some ICers here are also using the Uracyst instill that you get from Canada. It is OTC there, but it is not approved here yet. Don't know if you have access to Canada or not.

Hope this information is helpful to you.

NancyB:)