I had my first Botox injections on 12/15/05

[DeannaM]

I have been reading the MANY posts on Botox injections and thought I would share my experience. I had a Cysto/Overdistention followed with Botox injections on Thursday (12/15/05) morning. I had a lot more pain then I usually experience from just having the Cysto/Overdistention done, for the first 24 hours and a lot of blood in my urine. I have had no problems with retention so far, hopefully it will stay this way! I was able to sleep for 4 1/2 hours last night and am only voiding about every 2-3 hours today! If the only positive thing I get from the injections is less frequency and urgancy, I will be happy.

This was a first for my Uro, he attended a Urology conference two weeks ago to learn how to administor the Botox. We decided to try a smaller dose the the recommended 200cc with 20 -30 shots. He went with 100cc and 20 shots.

I am still having some pain and a little cramping, but am just thrilled to have the frequency so drastically decreased. I understand that it last between 4 -6 months, I can only hope! So far I have had no adverse reactions from the Botox and don't expect any. I have tried so many different treatments to get some relief, even having Silver Nitrate instilled into my bladder as recently last winter. I do get a lot of relief from all my symptoms with the Silver Nitrate, but it is so painfull and takes about a month to recover from! Yes, I have tried Elmiron, DMSO, Heprin and a whole list of drugs, the Silver Nitrate was a last resort. Its rarely used anymore and for good reason, having a baby is easier..lol

Sorry about the rambling on for so long, I am just so happy to have some relief!

[andcohen]

Glad to hear you are getting some releif. I think botox will be one of those meds that may always have it's up's & down's. It is something that I would consider ( mabey) The retention thing really scares me, so I just don't know :hmm: I'd say starting off at the lower dose would be the way to go.
Anyway hope it keeps working for you with great results.
Take Care
Andrea :angel:

[rhea]

Deanna-did they say that the botox would help with the pain at all????

[DeannaM]

Rhea,

They did say that some patients have seen a decrease in pain. I know for myself that today the pain is a lot less. One strange thing, I know I am having bladder spasms, but it only feels like part of the bladder is spasming. Its almost like the sections that were injected with botox don't feel as much pain!

[momw/ic]

Congrats! That is what Botox has done for me. Two nights ago I slept 12 hours straight through with out getting up to pee! Amazing! I'm happy for you - and it will continue to improve for a while as well.

Pam

[SusieQ045]

i have a question, do they put the Botox directly into your bladder? is it painful? how long does it last

susie

[momw/ic]

The injection are directly in your bladder and if you wish they can do the urethra and bladder neck as well. You are asleep so you don't feel it. They can also do spinal anesthetic for the procedure. The recovery time is about a week or because they do a hydrodistention with it. I had mine done in August and it is still in full effect. Not noticing any signs of it wearing off yet!

[SusieQ045]

thanks i am new to all these treatment options. when you say they do a spinal anesthtic do you mean like an epiural. ive had two kids and each time i had an epidural and it didnt work. well actually with my son i had four and my daughter i had 3. i dont know why but they just dont work. so does the botox numb your bladder? or is it just for spasams? sorry im asking so many questions the only treatments ive had so far a pain medications and elmiron and ditropan. thanks

[Flore]

I have had the injections for many times (I don´t remember if 8 or 9 or 10 times), and after prove many ways to inject it to me, my Dr found the quantity and the parts where is more effective in me

I use to have 150 or 200 units: He injects 50 units in the trigone, this helps with the sensation of the bladder full or wants to be in the bathroom all the day
The other units, he injects in the urethra and vagina, these helps with my PFD

I never have had retention, and I continue with pain, but in a very low level

My Dr now, injects the Botox when I begin with problems to empty my bladder or the flares are more often

Bye!

[ICEL]

I have servere IC and have stopped working. I have tried every medication with no results.

I am supposed to have my first Botox injection next Tuesday. I am nervous. Can you tell me more about how you feel when you wake up? Do you feel like you have to go to the bathroom right away? I believe my dosage is going to be 75 units to start.

Has anyone tried CystoProtek?

[Flore]

I think that if you are gojng to have only the injections, you are not going to have problems. If you are going to have the hydro/cysto too, the pain and spasms are going to be because of this. So my advice that you ask is your are going to have both procedures

Good luck!!

[Daffie]

I am having botox injections for the 8th time in February. I only had retention the first time and had 200 units injected. Like Flore I have injections in the urethra and pelvic floor which helps with emptying the bladder.

I went to a lecture last week about botox and the doctor said he no longer uses 200 units in the bladder with his IC patients because of retention. His patients do better with 100 in the bladder and 100 in the urethra and pelvic floor.

[momw/ic]

How does your botox wear off? I had my first injections in August and just now am having the old frequency and urgency symptoms returning. I have been trying to figure out if the botox is wearing off very quickly and almost suddenly or if I am in a flare and once I come through it the botox will still be in effect. What has been your experience with this for those of you who have had more that one set of injections?

Pam