Rescue InstillS VS Hydro/Cysto

[Judy777]

I was diagnosed with IC (with Hunners Ulcers) and Endo in June 05. I had a Hydro/Cysto and a lap for endo and cysts all done at the same time. I felt the the Hydro helped me for 5-6 months. My pain has been increasing since January and is not tolerable anymore. It's my lower right side "burning" feels like Hunners Ulcers have come back.

I have been on Elmiron, Elavil and Detrol LA since being diagnosed. I just had another 6 month check up with my Uro this Tuesday. I told him I was getting worse and the pain in my right side is terrible. He looked in my chart and said I have you on every medicine possible. He told me he wants to do 6 weeks of rescue instills twice a week. He referred to the treatment as bladder instillations and I made sure to verify it was not DMSO. He said He would try this and his next step would be to send me to one of his colleagues that specializes in IC. He said he would have the nurse schedule my treatments walked out the door and that was it. For the first time I felt like I was blown off. He never asked if I wanted to do the treatments.

I am very scared to be catheterized and have these treatments done 2 times a week for 6 weeks. I am afraid that this treatment could cause me more problems such as urethra burning (which I do not have now), UTI infections which I have not had a problem with.

I think I would benefit more from the Hydro/Cysto and have the Hunners lasered off again if they have come back. I am very confused on what to do and how to go about it. Should I call my Uro back and schedule an appointment and say Hey I’ll take the Hydro?
It would be great to hear from some of you that have had both of these procedures done and what your experiences were which one was more beneficial etc….

Thanks,

Judy

[Dixiefireball]

Honey don't be scared I was dx in 00 i then had hunner uclers at the time five huge ones. they was left on the bladder at the time. It was up until a few years ago i decide for them to start taking them off either by burning or cutting them i didn't care either way as long as they where off.
however they keep coming back nothing they can do or i can do will make those hunner leave me alone.
I do take pain medicine because hunner uclers make IC so much more painful! that will give me some relief.

as far as the installment goes I do them four times a day at home. They do not bother my hunners I do think they help them exp. when there causing me a great deal of pain.
just a hint if you find you have more burning down below try the non latex caths. even if you don't have a react normally to latex for some reason it cause me and a lot of others burning down there.
Good Luck hon please keep us updated on how your doing.
Rhonda

[Katrina]

He looked in my chart and said I have you on every medicine possible. not even close lol.


urethra burning (which I do not have now I could feel my urethra getting more tender....but hadn't yet gotten the right size for me. The good news is that you should be able to tell if it is getting to bother your urethra and decide not to do it, either not as much or not at all....you don't have to be scared to give it a try.
I recommend you get a good list of cathing advise together and bring any concerns to the attention of your doctor.

You got some great advise from Rhonda. If she hadn't seen this thread herself I would have sent her to it. She is the one to talk to. She has told me in the past that recovering from having the hunners lazered off isn't a lot of fun....even though it does help. The good thing about the rescue instill is that you shouldn't have to recover from it.
http://www.ic-network.com/forum/showthread.php?p=202531#post202531 this thread is full of good ideas on cathing.

One thing about having a lot of hydro's is scar tissue....some people can end up with more pain from the scar tissue so if there is a way to avoid that that works for you you probably want to give it a try.

Here are some links to treatments out there. :grouphug:
http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients
It will be ok:grouphug:

[ICNDonna]

First of all, I will tell you that hydrodistention has been a major treatment for me for all of my 31 years with IC and I have now had 40. That said, my first choice would be to have the instillations first to see if they help. I have also had many instills and I think they have helped me go longer between surgeries.

You can always opt for the hydro if the instillations don't help.

Donna

[Judy777]

Thanks for your encouraging words Donna, Rhonda and Katrina! I guess I could try the Instills and if it's too painfull I could always stop. Do any of you know what the sucess rate of the Rescue Instills are? I know it will only be temporary relief. If the Instills seem to help me out then maybe the Doctor would have me self Cath for when I need relief from flair ups.

Judy