my story/bladder instillations

[ldob63]

Hi, I've posted already. I'm scheduled for 6 instillations starting on Monday. My first experience with cystitis was when I was first married. I went back and forth from gyn to uro, urethra dialations (soooooooo painful), yeast infections, ect. Sex was out of the question. We spent $3000.00 at the doctors that year (1981) A lot of money in those days. Well, after the birth of my son my symptoms went away. I guess I stretched out and it made it better. In December I had a rectocele repair and it made it all tight again! I then had lots of uti's and now have cystitis again. I'm not sure if it is full ic or not, but my doctor wants to do the instillations. She said that my main problem is pelvic floor dysfunction. I am also going for physical therapy. I've been to one of the pt appointments, but not to the internal one yet. I did have a cystoscope and that doctor said he didn't see any cystitis. He was retiring though. So, here I am. I found out that my insurance isn't covering the cost of the instillations. It's going to be $75.00 per session. I also am so scared of cath's! Any suggestions? I'm going to request a little one, to be numbed. I just wish I could have some pain meds to go through with it. Most of my pain is my urethra. My gyn did put me on premerin cream which seems to be helping. I'm also on Urille which helps too.
So, that's my story. Anyone have instillations that can tell me what to expect? Is it really bad? Did any of you get a uti from them? My immune system isn't the best. I have a chronic form of leukemia/lymphoma.
Thanks for listening,
Lori

[ICNDonna]

Have you seen a urologist to confirm a diagnosis before starting the instillations? Your insurance would very likely cover the instills if you have a firm diagnosis since they are an accepted form of treatment for IC.

Sending healing thoughts,
Donna

[ldob63]

My insurance is covering the procedure just not the medication.

Lori

[Susan Osborne]

hello, i have plenty of instills. they are not bad. sometimes they will use lidocaine for a little numbing. i had her stop b/c the nurse is so good to me. she can cath really well. it takes just about 2 minutes for the instill. they put the cath in first and then will put the meds into the cath. depending on what type of instill they use, DSMO or Heparin, depends on how long I personally could hold it in. Not sure if they are still doing the DSMO TXS anymore. I think i read somewhere that researchers said they were good for us. But I found that i could hold the heparin instills in longer. i also do believe the mgs they used on me were different. DSMO were 100 mgs and the heparin were 80 mgs i beleive. there was a difference though. anyways , you are suppose to be able to hold in each TX for about 20-30 mins. you then pee it out. I hope they work for you.

susan