Considering Botox

[lotsofgirls]

Is there any downside to Botox besides the cost? Cath

[tigger_gal]

hopefully flore or Marya will catch this post.. They have had great results, I am sure there are more but not sure who.. I can't help you out but they may have some good input for you.
Hugs
Brat

[deborah b.]

Hi!!

I have had the Botox injection done twice so far and it is helping me with my Urgnecy&Frquency. I had the first one done in March and then the second when done in Oct. I am in 3 year trail study with doctor in Flordia. Deborah kissing

[Dianne]

I don't want to discourage anyone because this has helped many cases that didn't respond to anything else but it was a nightmare for me. The procedure itself was very painful in the office with only urojet for anesthesia (insurance wouldn't pay the hospital) in my case. I was very bruised high in the urethra from the manipulation of the scope. That lasted about a month. Then in my case it really affected motor function but not sensory as we hoped, so now I couldn't void very well but still had all the pain. Since I have pain with 30 cc, but now couldn't void until I had about 200cc to create enough pressure, I was actually worse off. Initially had to start cathing but eventually learned to express it out instead. I'm 3 1/2 mos. after now and still retain 50-100+ after voiding which I have to push out. I never did get any pain relief. I'll be glad when it's totally worn off and I won't be doing it again. I'm sorry this isn't positive and I sure wanted to be a success case but since you asked for the down side, I went on and shared it. I think my experience is the minority though and I wouldn't have been happy til I tried it. If I had to do it over, I wish I hadn't but couldn't have known that. I hope it works for you!

[mary a]

Dianne:
I'm very sorry for you!, But you are right, we need good experience posts and bad. It is the same as the interstim... there are very good experiences and very bad ones.
I hope you can find a good therapy that can help you!
I had the Botox without anesthesia, just the urojet and I think lidocaine or something that was put by a catheter maybe 10 minutes before the put the scope in to anesthesize the bladder. I could handle it very well. Maybe because I never had bladder pain.
I read your story before I had the Botox, and was scared to death!!!!, but my doctor calmed me, but anyway thank you for sharing your story!!! grouphug

[Dianne]

I think if one had lidocaine instilled before, it would be more bearable but I'm allergic to sodium chloride for some reason although urojet doesn't bother me, weird and urojet alone just wasn't enough to do it-it's too thick and doesn't make contact with all the bladder wall. It actually wasn't the shots themselves that hurt, it was the manipulation of the scope esp. when trying to hit the side areas that was so painful. I have a really hard time with a scope because my urethra is so involved. Also having that student shove a Qtip up my urethra to hold in the urojet was as bad as the rest of it. Won't ever allow a Qtip in me again. Hope it works for you!

[liz2]

I know a number of people who have had very positive results with Botox. However, retention and catheterization are real possibilities and are more likely if you use 2 vials.

[tigger_gal]

grouphug Diane I am so sorry this happened to you, hopefully you will be better soon.
Brat

[lotsofgirls]

thanks Dianne.
I really need to hear the whole spectrum of responses to properly assess whether or not to do this, and I am very thankful to you for sharing this.

I hope it wears off soon, and you start to feel better.
Cath kissing

[liz2]

Unlike Dianne, I chose to have my procedure in a hospital under general anesthesia, and a cysto/hydro was done in order to place the injections. The procedure was a breeze. My insurance paid fully.

I still have retention following botox and have to catheterize, which I did not have to do before. I was warned that there could be some retention.

I wonder if the retention would be less of a problem for me now if I had started with one vial of botox rather than two. Sometimes it is better to start slow and work your way up.

Additionally, I am curious to know what my outcome would have been if my urethra had been injected as well as my bladder.

I have heard that some doctors are also injecting botox in the pelvic floor. That is an area where many of us also have pain.

[Flore]

Dianne:
I´m so sorry about you, I hope you can find relief soon!!

I think like Mary A, we want to listen your experiences, bad or goods, and for us is easier take a choice

I´m very happy with Botox treatment. I had the injections 2 weeks ago. I´m pain free, my frequency is every 3 hours, and once at night. My urgency is gone too

But this time I feel retention, I don´t have to cath my self, but I have to push to empty my bladder

3 days after the procedure, my residual urine was 150 cc, and last week I only had 100

So my dr said that everyday I´ll be better

Liz:
I think that with less Botox, and injected in urethra too, you will be better

My dr only injected 100 units. 50 inside my bladder and 50 in my urethra

[liz2]

Yes, I agree with you, Flore. So much of IC treatment is simply a matter of "try" and see what works with this particular patient. Our bodies are so different that treatment responses are hard to predict.

Also, botox is experimental and doctors are modifying and perfecting techniques as they learn more.

Flore, I am glad things are working so well for you this time. I wonder how Cindy is doing, since she has had success with botox.

[Flore]

The 3 times I have had the injecitons, I have been under anesthesia, and my dr prefers let me at the hospital for 1 night

Liz:
About your comment of Botox in pelvic floor I want to say something

Like many of us, sex is painful, and I use to have pain after the relations. Well, last week my husband and I went to Acapulco alone (without kids), and I was afraid because of sex
We had the most beautiful weekend in a long time, and I didn´t have pain (only a little, but with my analghesic I was pretty fine)
When I arived I had an appoinment with my uro, and I told him this great succes, he told me that in this time he put Botox in my vagina too (inside and in the vulva around the vagina) but only little

So... I think that this is help me too with my PFD, because after the injections I haven´t had the sapms again, and my sexual life is better

Like Cindy, Botox gave me my life again, and I only take cysta-q (and when I have pain analghesics)

I hope this information could help

[Dianne]

I am so happy for you guys. If sharing the details scared anyone off, then I apologize. I understood the poster wanted to know of both positive/negative but if I misunderstood, my apologies. Personally I like to know all the possible scenarios and experience before I decide so I can make an informed decision but maybe not everyone does. On the interstim board there's even a separate category for people it didn't work out on to share which has helped me think through whether I wanted to do that. I did state that my experience seems to be the minority and that I wouldn't have been happy til I tried it and so forth. I was well informed of the risks and I appreciated Cindy reminding me that it might not work for me so I didn't get hopes too high. If I ever do find something that works though, I'll be shouting it from the rooftops and I applaud you guys for doing so.