Uro wants to try botox

[George]

I need some advice. Had a cystoscopy a week ago and the urologist showed me the pictures of my bladder after hydrodistention and showed me the hemmorhaging on the bladder wall. He said it was possible it was IC but he could not give me that diagnosis because I don't have pain. My symptoms are terrible frequency every half hour to hourly. The uro has advised me to have botox injections. I don't feel the need to pee in my bladder but more in my urethra. Am very interested to hear any of your experiences with botox good and bad please. Thanks a lot.

George

[deborah bush]

George I am in a 3 year trail study with doctor in Miami, FL for Botox. I have severve urgerceny and freyceny. I had 5 treatment and they have had helped me alot. George I think it would help you alot. I would give you his name and number if you e-mail me. deborahbush1952@yahoo.com George have a nice day.













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[George]

Thanks for your reply. I am in Sydney Australia so a long way from you. I'm pleased botox is helping you. I don't have so much urgency, but I do have terrible frequency day and night.

George

[ICNDonna]

There are several people who post fairly regularly and have been treated with botox. Hopefully more will see your post and respond.

Donna

[momw/ic]

I had my first botox treatment on August 9th and it has worked wonders for me. I now sleep about 7-8 hours through the night without getting up to pee! During the day I go about every 4-5 hours which is improved from every hour. Pain is my dominant symptom but the frequency has been almost just as bad. It has also helped with my pain. I still have some but not near to the extent as before. I am definately going to be a regular on the botox list!! I hope you find something that works for you. I have tried so many things and it is wonderful to finally find something to make a difference.

[George]

Dear Momw/ic,

Thanks so much for your reply to my post. I was really pleased to read such a positive post and that you have had success with botox. My main symptom is frequency and I don't have pain. My uro has written to my health insurance fund to find out whether they may pay for the botox, so I am really hoping for a positive reponse from them.

Do you know what dose of botox you had? I would be very interested to know.

Thanks again for your reply.

George

[Rose Fish]

Hi MomwithIC - just read your post and I have the same question as George. Could you tell us the dosage of Botox used in the bladder. I heard alot of people go into full blown retention from the botox unless a small amount is used. Did you just have botox injected into the bladder or the urethra too. Also did you do the botox while having a hydrodistention or were you fully awake and just had the botox injected. My doctor keeps pushing for the botox too but I have heard such negative things that I was afraid to start this treatment. Any answers you could provide would be greatly appreciated.

Thanks again, Rose Fish

[momw/ic]

Sorry it has taken me so long to get back to you. I have actually gone back to work because the botox has given me my life back! To answer your questions:

I had a cystoscopy w/hydrodistention under general anesthesia. The uro injected 10 injections of botox into the trigone area of the bladder and the bladder neck. The total IU of all injections was 200 (I believe). I have had NO retention at all. I self cath everyonce in a while just to check and see. Not only that but my stream is much stronger and faster. I now sleep through the night about 8 hours without getting up to pee. During the day I go about every 4 hours (sometimes less). My pain level is also much improved. I have pain in the morning I think from being so full and in the evening from being up and on my feet all day. I hope this helps you - it was an easy procedure but it did take about 2 weeks for the botox to kick in and to start feeling better. One recommendation I have is to go home with a catheter for a couple of days. That allows your bladder to recover and heal for a few hours before you force it to perform. That really helped me. Also, you can get some good rest without peeing constantly because the first few days the trauma from the surgery increases your frequency.

Well, let me know if you have any other questions. I would be happy to answer!

Pam

[George]

Dear Pam,

Thanks for your reply. It was really helpful (and hopeful) for me to hear about your positive experience.

George

[MimiG]

Just want everyone to know I'm still here and reading Emails :)
My Uro has been planning to try botox for my freq/urgency..no pain. I have had a cystoscopy and urodynamics test with lidocaine, it was bearable :) I had bladder biopsy as a day surgery in hospital and was dx as chronic cystis.
Uro's office manager quit and he and I were both waiting on status of botox order.
Hopefully will get it soon. Hubby has had a few health problems and that sidetracked us also, LOL
mimiG