Botox 3 days ago

[Indy]

Well, I'm not sure what to expect. I had 300 units put only in my bladder. I can pee but don't feel like I'm getting it all out. It is changing daily as I think it can take a few days to soak into the nerves.

Can anyone comment on that?

I don't feel horrible pain, just a sensation that my bladder isn't empty-it's annoying but I don't want to get upset yet since it's early.

I'd really appreciate some feedback.

[Flore]

Hi Indy!!

All the times I have Botox injections I have the same sensation, and maybe in a few days your are going to see if Botox helps you or don´t

I never have had 300 units, my dr uses to put only 100 or 150 in the bladder, sphincter, vagina and urethra

[Indy]

Hi.

I wonder why he used so much and only did the bladder? Did you ever just have the bladder and did that work?

[Flore]

No, in fact, I only have had twice inside the bladder, but those times, I had in the sphincter too, my dr says that he puts in both sides to help with the retention

And only I have had in the bladder twice because I think that there didn´t help me so much, so now the injections are in all the pelvic floor, and I´m able to empty my bladder without problem, so I´m with less pain, do you understand me??

[Indy]

Flore,
I do understand you! I also speak Spanish.

I must have spasms elsewhere. I have been looking into marcaine trigger point injections into the pelvic floor. I wanted to see where to Botox got me first.

I have to go through a detox program for blood poisoning from mold exposure and now I don't know if my bladder can handle it. I expected so much more.
Tommorrow is 1 week but I'm losing faith.

[Flore]

I had once Marcaine injections in a very painful point in the right side of my vagina, but it didn´t work in me

Sorry, but I didn´t understand this:
"I have to go through a detox program for blood poisoning from mold exposure ", can you explain me better??????

Are you continue with retention????????, Have you proved FLOMAX??, in México is Secotex and it uses to help when I have retention

[Indy]

Hi.

I haven't asked about Flomax because I have low blood pressure. I can pee if I drink a lot of water.

I have a post "Mold toxicity and IC" where I explain I have blood poisoning from being exposed to toxic mold and that could have caused my IC since it interferes with proteins and mucus membranes.

I am close to my period which I expected to be less painful with the botox and it's not.

Could you eat or drink anything?

[Flore]

I have low presure too, and with flomax I don´t have any side effect, so yu can ask yuor dr about this

I don´t have much problem with food, I only cannot eat pineapple and strawberry and when I feel my bladder inflamated I cannot eat condimate food

I have to drink at least 1.5 lts of water daily, and it helps with the burn inside my bladder

[Indy]

Thanks so much. My follow up appointment is in 2 weeks. If I still have retention, I'll ask about the flomax.

It's been 1 week so far--I'm hoping for a miracle.

[shennan]

i am also looking into botox and i have heard that it can cause retention so that the person has to cath. to get it out. this is the only really bad thing that i have heard/read about.

hope you are better!

:pray: er's for you.

shenna
;)

[Flore]

Shenna:

I think that the retention depends of the quantity of Botox that you have inside the bladder. For example I never have had it

[Indy]

Well, it's now been 8 days and I'm realizing that it isn't going to work. All it has done is made me struggle to get the pee out and I feel worse! I thought it had a very high success rate. I spent my own money and my hopes were so high.

The Botox was purchased at the UCLA pharmacy the morning of the surgery so it should have been of the highest quality.

Now I want it to wear off so I can get the pee out without straining so much.

I have no idea what to try next-maybe a nerve block which is scary.

[shennan]

please try and drink some evain.

i am sorry that it is not working for you.

for now, i am going to stick with my heparin instills...

i do go for a urodynamics test ina bout 2 weeks with the houston botox doctor.

my husband thought that the doctor wasn't 100% convinced that the botox would work for ic'ers.

the doctor told us it was a 50/50 thing.

i hate to say this, but when i get bad retention, i do have to drink a small amount of coke or dr. pepper. it always gets me going. of course, i then have to deal with the burning and itching, so i pour the xylociane/lidocine on my female parts and/or do a instill with the same in it.

sorry, indy!!!

good luck!!

shenna


:)

[Flore]

Oh Indy!!!, I think is very soon to see the results!!!!, I began to see them after 10 or 12 days, and in my association we have a patient that lasted 2 months

Anyway, if Botox doesn´t work in you, in 4 months you are going to feel like before the injections

I agree with Shenna. IN MY CASE Botox only helps SO MUCH with my PFD and vulvodynia

Try to take it eays, stress is our worst enemy, ok??????, and keep in touch!!

[Indy]

Thanks ladies. I thought it was a 70% success rate. The amazing thing is I have had several multi-year remissions after having this 11 years.

I'm going to do some yoga and try to stop thinking about it.

If I drink a lot of water at once, I can pee. So I'm chugging it. I'm just not able to go without pushing when there isn't the threshold amount in there.

Thanks for you support.

[shennan]

call your uro and ask for some catheters.

you can cath. to get it out.

the nurse taught me how to perform the cath.

it is not too hard after the first time.

my husbands helps when i put the heparin, sodium bicarb, steroid, xylocaine, and the elmiron capusle in the top of the cath.

i can cath. myself to get it out.

good luck!!!
shenna
peace/shalom--even though i am catholic!!
:pray: ers for you

[Daffie]

Hang in there Indy, it takes about 3 weeks for me to feel the full effects. My doctor told me it was a fifty/fifty thing but actual studies show about 60% success rate. I think most think it is an instant fix, it does take a few weeks to notice improvement. The first time it took nearly five weeks for me, the doctor used 200 units and I thought I was never going to be able to empty my bladder again. But after about 6 weeks I could and I felt incredibly better so the next time I asked that he only use 100 units in the bladder and that seems to work the best. I do have some minor retention for a few weeks but nothing to terribly bad.

Good luck,

Daffie