Botox or Not??? (and questions)

[georgecoolname]

I'm scheduled 8/30 for the first Botox (bladder). Am curious to see how it works, though I have had urine retention problems in the past... I guess I'd just love to see something actually work for once. I'm tired of having pain and feeling like I have to go to the bathroom all the time. I know how to cath myself if there is retention, but I don't know... Some questions:


1. For those who get the Botox more than once, does symptoms and results vary each time?

2. Does the amount of Botox make a difference with urine retention problems?

3. Were you guys put to sleep for the treatment?

4. I know how they do the bladder botox, but what about pelvic floor?

5. Does the Botox ever eventually take away the problem completely?

Thanks you guys!

[Mothergoose]

A uro just told me if you have retention problems you should run away from botox, his words not mine.

[georgecoolname]

Hmm. I'm wondering if the retention problem would be much different anyhow and if the pain going away would be worth it?

[Mothergoose]

Retention can be caused from many things, uros's have not figurd out for sure what causes mine.

the thing that bother me with botox is once it is in it takes mons to wear off.

I used to get botox for migraines it worked great for them I had to get it done every 3 mons.

So I do know it works, but people used to tease me about not beening able to raise my eyebrows.

MG

[georgecoolname]

How long were you in retention for after Botox?

[Mothergoose]

I got the botox in my forehead not my bladder. I was told if I agreed to botox in my bladder I would need to be cath for at least a month, or longer.

MG

[Toto]

Mothergoose, I get botox for migraines these days and can't raise my eyebrows much either!

Georgecoolname, I'll be interested to see responses about this. I had no idea they do the botox now for the bladder. Definitely something I would consider because it works well for my migraine pain (every three months). As mothergoose said, once you get it, it doesn't wear off for a while.

I'm not sure how the botox works on the bladder, but as for migraines, I was told the first two treatments may not work so well. It usually takes a few treatments to see good results. In my case the results were good right away. Of course the bladder is a different organ, so I'm not sure if it works in the same way. And I know they will give a specified amount. In cases where there's a problem of some sort, they reduce the amount during the next treatment.

[Mothergoose]

Toto

I was told the same thing the first treatment for migraines may not work as well, I needed to consent to 2 treatments to have the first. Like you I noticed a difference right away, or within a couple of days.

I had them every 3 mons for 2 years and now no longer need them to control migraines, I still get headaches but no where near as bad and not constant. If I don't get a good nights sleep, I will wake with a headache but if I get on it right away and get up and moving I can usually get it under control, I may have to take migraine meds thought out the day, never the max anymore and I may have to repeat pain meds, but it is livable.

I had a migraine everyday for 5 years, the last 2 were much more manageable with the botox, and I am happy to know if they ever get that bad again I can go back to botox.

My migraines were caused from sleep deprivation from IC, once I got on treatment before both conditions I have done much better.

Georgecoolname: If you decided to go this route let us know how it works for you, if it made retention worse etc.

Thanks MG

[Toto]

Mothergoose, I'm so glad you got relief. Five years of migraines sounds horrible! So glad you are doing better. I too hope to get to the point that you are at and decrease the meds.

Gosh, if I get botox for my bladder too it will be like my whole body is botoxed! I have to laugh at these things...

[skshadix]

I was diagnosed in 2009 and am sure i was misdiagnosed for years. I have been in and out of emergency rooms since i was 14. I am in pain every day, I have so many yeast infections i could scream. I have had 2 DSO's they do not work!!! for me anyway. My doctor is telling me Botox is the next option but warned me about how painful is was has anyone had this done?

[Lisa R.]

Botox was the best Thing ever!

I have had 4 injections of Botox in the last 2 years (yes before approved by FDA) my insurance totally covered it. It changed my life. Under general anesthesia, the doctor injected 30 times into the detrussor muscle in the bladder. The discomfort after was minimal compared to the IC pain. I had to cath my self only one time. I felt no pain, in fact didn't feel like I ever had to pee. Losing all sensation in the bladder makes it hard to pee, I had to bear down and use my stomach muscles but it was totally worth it. It lasts about 6 months or so then I would go again. Unfortunately, just went yesterday to get checked and my uro said that I might be too far gone for more Botox. I am having urodynamics done on the 16th to see just how scarred my bladder is. I am an endstage IC person. I would recommend botox for any IC patient.

[deborah bush]

I need to talk with you

I have had 4 injections of Botox in the last 2 years (yes before approved by FDA) my insurance totally covered it. It changed my life. Under general anesthesia, the doctor injected 30 times into the detrussor muscle in the bladder. The discomfort after was minimal compared to the IC pain. I had to cath my self only one time. I felt no pain, in fact didn't feel like I ever had to pee. Losing all sensation in the bladder makes it hard to pee, I had to bear down and use my stomach muscles but it was totally worth it. It lasts about 6 months or so then I would go again. Unfortunately, just went yesterday to get checked and my uro said that I might be too far gone for more Botox. I am having urodynamics done on the 16th to see just how scarred my bladder is. I am an endstage IC person. I would recommend botox for any IC patient.

Lisa can you give me a call so we can talk about Botox and Pain Therp. My phone no. is 304-280-0010 if you do not want to
Call e-mail me at [email protected]. I be looking for you.

[lindao76021]

Did you do it?

Just reading through this and am wondering if Georgecoolname had the botox injected?
I saw a uro a few weeks ago who says I was a candidate, but after reading all the posts, I'm not sure I want to do it. He was not really wanting to answer a lot of questions. He's not my regular uro but the only one in the group that does botox.
After going to the bathroom, there are times that I will go every 10 minutes, especially after drinking something. There are times at the movies that I just stand in the aisle because I know I will be up again in 10 min. and don't want to crawl over my husband again. I get such a "heavy pressure" like when I was 9 mo. pregnant and really, really had to go. I also have pudendal nerve pain. A lot of times it keeps me from exercising because afterwards I feel like someone has kicked me between the legs and I'm bruised and swollen.
Not really sure what to do. It's covered by our insurance but we haven't meet the deductible and it would be about $2000. We're so late in the year I'm thinking about doing it in Jan., then if it has to be done again, the deductible will be met.
Thoughts?

Linda

[georgecoolname]

My actual surgery experience

Just got around to this guys, sorry. I got the surgery done August 30th. I'm happy with it. Things went smoothly that day, except I spasmed a lot at first (probably from being knocked out) and they cathed me before I left because I didn't have enough energy to make all that time to empty out my bladder. I was prepared to self-cath (as I'm sensitive to urine retention), but was able to go on my own that evening.

Didn't take long for me to feel better and I still do. I don't have to go to the bathroom as often and it doesn't hurt as much. However, it is usually slow to empty, even to this day. Having a shy bladder makes it worse at times. I'm just happy I can still go and since it doesn't hurt as much, it's not so bad holding it if I have to. I usually wake up in the middle of the night to empty what I can't before going to bed, but that's no different than before.

I'm curious on what it's going to be like when it wears off. I would get it again.