effectiveness of instills

[ginaaa22]

Has any gotten instills before and had no relief and then gotten them again and got relief? I had instills done before and they would help for a couple of days then they wouldn't help anymore. I'm wondering if I should try another round of them (I did it 2x a week for 6 weeks then 1x a week for 6 weeks). I see my urologist next week and she said this could be an option. When I did get them done I had urethral spasms when inserting the catheter! SO PAINFUL!

My dr also had cath sent to my house from a medical supply company so I can self cath if I can't pee.. The lady who does my PT said this is a bad habit to do because it lets the bladder be lazy. She said it won't work right if you self cath at home.

[sailawaygrl]

I do home instills and at times with a really bad flare I may not get the same amount of relief. Maybe you could try a different combo of meds this time and see if that makes a difference. On the spasms issue the best thing I can recommend is asking that they use the smallest catheter possible. Many of us use an 8 fr pediatric feeding tube and they work wonderfully, my previous urogyne used them.

Maybe you could speek to your Dr about your PT's concern. If you are experiencing a lot of retention you might want to ask your Dr if it could be caused by one of your meds.

"What won't work right if you self cath at home"? Do you know what she meant by that?
Sandra

[ICNDonna]

Do you know what is in the instillations? There are different combinations being used. Some ICers are really helped by doing them --- and many are doing them at home.

Definitely talk with your doctor about your PT's comment. I do know there are people who self cath to do instillations more than once a day and don't have the problem she mentioned, but your doctor is your best information resource.

Sending warm healing thoughts,
Donna

[ginaaa22]

I believe before they used heprin, lidocaine and sodium bicarbonate but I'm not 100% sure. I think my PT meant that when you use a catheter it makes the muscles of the bladder weaker and makes it harder to go normally when your not using a catheter.

Also has anyone had problem self cathing when their vulvodynia is acting up. When I'm having a flare my vulva gets all inflammed, red, and painful and it makes it hard to get the cath in.

[sailawaygrl]

I thought that is what it meant, just wasn't sure "what" might not work right. LOL Some of us do use different medications, like I use marcaine (like lido but to me works better) and I don't have to use sodium bi carb which gave me a lot of burning. I did find the the longer I did the instills the more they seemed to help. Honestly for me, instills have never helped longer than 8 hours at the most. I do them at home daily and find that they help me a lot. Once you get used to doing them by yourself it takes very little time and to me it is well worth it. You might ask if you can try them at home by yourself.
Donna makes a good point that many of us use catheters daily and don't have problems. How often do you have retention issues?
Also on the urethral spasm issue there is a thing called a uro jet that is lidocaine that they insert into your urethra prior to the instill causing it to be numb. That might be an option you could ask your Dr about.
I hope this answers some of your questions and gives you some info to discuss with your Dr.
Sandra

[ginaaa22]

I thought that is what it meant, just wasn't sure "what" might not work right. LOL Some of us do use different medications, like I use marcaine (like lido but to me works better) and I don't have to use sodium bi carb which gave me a lot of burning. I did find the the longer I did the instills the more they seemed to help. Honestly for me, instills have never helped longer than 8 hours at the most. I do them at home daily and find that they help me a lot. Once you get used to doing them by yourself it takes very little time and to me it is well worth it. You might ask if you can try them at home by yourself.
Donna makes a good point that many of us use catheters daily and don't have problems. How often do you have retention issues?
Also on the urethral spasm issue there is a thing called a uro jet that is lidocaine that they insert into your urethra prior to the instill causing it to be numb. That might be an option you could ask your Dr about.
I hope this answers some of your questions and gives you some info to discuss with your Dr.
Sandra

I have only had retention issues the one time. They have used lidocain to numb me before and it helps somewhat but is still painful. When I got my instills I had to hold the fluid in for as long as I could which was usually 1-3 hours. I might try doing my own home instills to see if it will help.

[L. Thomas]

Instills are not the answer the cure for IC or the only treatment that is successful for everyone. Don't think that you HAVE to do the instills. You will have to decide if the pain you are having with instills is worth the relief you get from them.

If you do decide on home instills don't hesitate to contact me for hints on the procedure. I have been doing then a Long time.

[BrandyDW]

When i was having the instills done at the urologists - I had it done first once a week and then later once every two weeks... They had to use the smallest catheter they had there, and more often then not it took about 5 tries to get it in the urethra because of how tense I always am.

However the medication never burned, and I could hold it for hours on end. However I did notice that usually the day or two after having an instill I would have to urinate more often then usual..

To me they were very effective... As for what was in them - I was just told it was a elmiron cocktail..