Heparin instils

[Gloria J]

I was thinking of starting heparin instils but I am not sure which way to go. Do you have straight heparin? I was thinking of having heparin and DMSO. I am having DMSO at 25% now and have been for some time. I don't want to do rescue instils at home as I have a very "touchy" urethra and don't want to be cathing so often. Does the heparin burn as much as the DMSO? I don't have too much trouble just burning the first day and mainly just soreness in the urethra the second day. The DMSO has been helping but apparently the heparin helps put a GAG layer on the bladder and this is what I need as I have Hunners ulcers.

[lisarb]

I get heparin, lidocaine and sodium bicarb instills and they have never burned me, but I know everyone is different. Plus the lidocaine numbs the baldder and my nurse practioner uses lidocaine gel on the cath which I believes helps the other areas from burning or being irritated. Plus her and my urologist are really quick and good at cathing so I barely feel it. I choose not to do DMSO so I can't comment on it, but my heparin instills have been the only thing to give me alot of relief. Good Luck

[waterflow]

Mine is heparin/lidocaine/ water.

[Gloria J]

Thanks for the replies. A couple more questions - how often do you have to do the instils and what amount of heparin do they use.
Once again thanks. Gloria:kiss:

[lisarb]

I have an instill done once a week at my dr's office and that frequency works for me. But I have read posts on here that some people do them at home daily and I'm sure there are others that go longer as everyone is different. I use a one ml bottle of 20,000 units per instill and the nurse practioner mixes it with sodium bicarb and lidocaine, not sure the amounts on those as I just supply the heparin. Any other questions you have I am happy to help, I can't help with self instills but I know many girls have posted tips on them. I live 5 min from the hospital and only work 4 days a week so I am able to get them done at the office because it is so close on my day off. Lisa

[mandycgirl91]

I would avoid dsmo. my dr refuses to use them on anyone. she uses her own mix that is suppose to be better. dsmo hurt more i heard and give you a weird taste in your mouth.

[KKG]

I was thinking of starting heparin instils but I am not sure which way to go. Do you have straight heparin? I was thinking of having heparin and DMSO. I am having DMSO at 25% now and have been for some time. I don't want to do rescue instils at home as I have a very "touchy" urethra and don't want to be cathing so often. Does the heparin burn as much as the DMSO? I don't have too much trouble just burning the first day and mainly just soreness in the urethra the second day. The DMSO has been helping but apparently the heparin helps put a GAG layer on the bladder and this is what I need as I have Hunners ulcers.

Gloria,
My sister just had the heparin and it put her into a major flair and we are still dealing with it and it's been 5 days. She said she will never has this instillation again. The DMSO is short lived for her and to be honest we haven't found anything that works great....any suggestions as I know you are having your issues to but no one knows how the medication will effect their body until you try. We need a new directions.:bonk:KKG

[Gloria J]

sorry to hear that your sister had such a bad time with the heparin. I have not had a heparin instil yet, I am still having DMSO at 25%. I have never had a flare for 5 days after the DMSO usually only the first day. My biggest problem with the instils is my urethra, the last one I had really hurt the urethra even though they put lidocaine on first but by next day most of the soreness had gone.
I drink lots of water after I have the instil and when I get home I rest with a heat pad on my pelvic region.
Hugs Gloriaxx