I had Botox!

[mary a]

Hi everyone!, just to let you know that I had Botox last week!, it has decreased my urgency a lot!!!!, I have the interstim and it has helped me a lot with my frequency, but not with my urgency. I tried detrol, ditropan and I don't remember the name of another drug to help with my urgency, and they have not helped me at all. And after trying a lot of different adjustments in my interstim, my doctor decided to try Botox.
It was done without anesthesia and without sedation (I was very scared) but it did not bother me that much. I could tolerate it pretty easy. I know I don't have bladder pain, maybe if I was in pain like most of you, I would had it done under anesthesia.
I'm very happy, the only thing is that I have to push to let all the urine out, but I can hold 50% more urine than before and withought the urgency and urge incontinence I was having.
I know it is very expensive, but it is worth it. I hope the insurance companies will pay for the Botox very soon!!!!!! :D

[CinSin]

That's great that Botox helped you!! It is the only thing that has helped me. I go December 19th for round three. I am soooo ready.

It will get even better in a couple of weeks and the pushing will too.

Cindy

[Dianne]

That's wonderful, Mary! I sure wish it would have helped me. On the insurance end of things, I was told by my insurance co. that they would not pay anything except the cysto itself and only if it was for something besides just botox injections but I was just notified that my portion is only $157 and they paid the rest so I'm getting $1350 or so back. Yeeha! I sure minded less that it didn't work when I found out earlier this week that I wouldn't just be out all that money. I hope the same thing happens for you.

[CinSin]

Mary - Both of my insurance companies paid. The most I paid for either of the first two rounds was $200.00. Good luck with your insurance. Cindy

[tigger_gal]

Mary, got you pm :) I am so happy for you I might thro a party :) hope you contiue to feel better.
Brat

[mary a]

THANKS EVERYONE!!!!!!!!!!
CinCin, I had it done in Houston, what is your insurance company? I hope is the same one as mine...

[deborah b.]

Mary I as so happy that the botox helped you!! I had my 2nd. round in Oct. and it is helping me. Deborah kissing

[liz2]

Medicare and my supplemental insurance paid for my Botox injections and the entire surgical procedure. The hospital helped me with my numerous appeals and multiple coding of insurance submissions.

[mary a]

More or less, how often do you need to repeat the injections?

[CinSin]

About every six months for me.

[liz2]

Mary, the medical providers in Houston worked very hard with me to try to get my procedure paid for. I was told that a lot depends on the way the doctor's orders are written for the surgical procedure. That could be why Dianne's insurance eventually paid.

[lotsofgirls]

Liz,
did the botox help with pain? I have the urgency, frequency doing better, but not the pain. I am seeing a pain dr in Jan who wants to do the Botox treatment, but I wanted to talk to someone who had it and got pain relief.

Thanks, hope you are keeping well, nice to see you pop up on the boards,
Cath

[CinSin]

I can't answer for Liz but Botox certainly helped the pain with me. The pain before Botox was completely unmanageable and totally controlling. I still have some pain but now it isn't constant and it is tolerable.

Botox took care of the urgency and frequency too!!

Hope this helps, Cindy

[liz2]

Botox helped me with urgency and frequency and bladder spasms. I did not get the pain relief that I had hoped for. However, many people do.

[Flore]

Mary, I´m very happy for you!!

I had the injections last Nov, 15, and I´m perfect. My urgency and frequency have gone, in fact, many times I think that I don´t have bladder anymore!!!

I have to push too for empty my bladder, but I don´t need to cath my self

I don´t have pain, only I continue with trouble with my vulvodynia

My insurance payed de 90% of the total account (including hospital, drs, Botox and meds I needed)

[erinaj1997]

I'm so glad Botox is working for so many of you!
Do you still have to follow the IC Diet?

Erin

[Flore]

Yes I do. But before Botox and now, my biggest problem is the friut and juices, specially strawberries and pineapple and orange juice

[violet]

Does Botox help with urethral pain. I have mostly that problem> Right now I am on cymbalta and it is not working at all. So I take pain pills everyday and I am afried to get a tolerance to them. Thank you violet

[Arizonian]

For those of you who were able to get your Botox shots paid by insurance, how were you able to accomplish that? I am going to have the Botox shots into my bladder and as it's experimental, I will have to pay out of pocket. But, in reading this column, I see that some of you were able to have your insurance companies pay for your shots. I would be interested to learn how your doctors wrote that as an approved surgical expense to your insurance companies.

[mela414]

Does the Botox help with bladder pain? I thought it was only for PFD. My pain gets worse from diet or certain medications......so I guess whenever anything irritating passes through it. Would it help that? What about the swelling I get when I'm flaring from something to. Would it help that?
Just trying to leatn as much as i can about this procedure.
thanks,

[Flore]

I have had the injections since 2002 , and I think that my Dr and me have learned so much about Botox in my case

I mean, now, I have the injections every 4 or 5 months, to prevent a major flare. He only injects in the trigone, but intra mucus, and this helps with the urgency symptom

He injects in the urethra and pelvic floor (in the vagina). I have a terrible PFD and of course vulvodynia, so if I can void without push, my bladder goes better

Of course I continue with burning and pain in the bladder, but is more controlable now

In México, Botox is not an experimental treatment, so my insurance pays the 100% of it

[ICEL]

Can you please tell me how many cc's you used and how many places you were injected?
Thanks
Ellen

[Flore]

The vials depend of how my dr sees the inflamataion or the contracture I have in that moment. I mean, if I am so much, he injects 2 vials or if I have many problems for urinate, too

I don´t know how many injections I use to have, but I think like 30 between the trigone, the urethra and the pelvic floor

[deborah bush]

I just found out that my insurance is going to pay for my Botox. I went throuth the Botox Advantage program and they helped me out to get my insurance to pay for it. But if you do not have insurance or if your insurance will not pay for it. They will help you get assistant for you. Though number is 1-800-530-6680. I had just finised a 3 years trail studyed with the botox. I am going to have another botox treatment done in Oct. Hi! Flora!!! How are you doing?

[mela414]

does Botox help the pounding, throbbing, burning pain from inside the bladder itself?

[walnut]

I just saw a doctor the other day and he refused Botox saying that because I am prone to hesitation I am not a good candidate. He said I would probably end up with hesitation so bad that I would have to cath myself for about 4 months and he seemed to believe that people say they are motivated to cath themselves and after a few times do not want to do it anymore. I have not done it yet but have had it done so much I cannot see a roblem doing ti myself at all. His coleage had tried to talk me into learning to self cath as a permanent treatment with large amounts of ditropan daily tht would cause extreme hesitaiton. She said everyone does it with no problem and I would have no problem it was easy.

I would like to try Botox. Almost everything else has failed.

What does everyone think?

[dl_54]

52 year old teacher who has for 30 years seen over 20 doctors who have diagnosed me with UTI, stress, etc. Finally a NC dr. who is so popular and I travel 4 hours one way to see him is getting me into this program, but in mean time I am in severe pain. I do the instillations 3-4x's a week, can't handle anymore, take 2 antihistimines and methadose 3 times a day (it doesn't touch the pain). My doctor is my guardian angel but yet I'm frustrated at the pain level that I live with, on a scale of 10, it averages at 8. I told him of a patch that previous dr. had me on until I could see him but he was not comfortable with it. What do others do in this situation? I have called him again today and am waiting for his call (he always calls back).If all the meds, instillations and meth even took the edge off I'd be happy, but I just get sleepy (I teach 5th graders, no nap time!) What do others use to take away the pain? Methadose does not work for me! Just telling story again helps me, thank you for listening.

[tabasco32]

how does botox help with all of this? does it extent your bladder or something?

[mdcbsb]

how do you convince a doctor to do the botox?is there a list of doctors in each state that are using it?

[redfaced]

Where do you get Botox injections? Does the uro do those or do you have to go to a pain clinic??

[redfaced]

dL-54, I also live in NC. Where is the doctor you are talking about?? I am also a teacher but had to give it up due to other health problems I was having. Then I got this IC, so I'm glad I'm not teaching this year. I don't know how you do it, having IC.

[walnut]

My doctor does not want to inject my pelvic floor. I have been diagnosed with pelvic floor disorder. I think he is wrong and it could caise a lot of problems. I take valium to help with this so I spoke with his nurse and she said not to take it a couple of days before I come next week so he could examine me without it and I could telll him my experience without it. Bu the said he was not going to inject the pelvic floor before he ever examined me!

[Linaria]

My dr has applied for botox it has taken almost +- 5 wks to get anywhere with the Med aid. I am now waiting again for the board of the med aid to decide whether or not they will pay for it. I am needing it for pain control. Has anbody just needed it for that. I can manage everything else , Catheterization, intermittent what ever. Just the pain They have given me different pain meds which don't work and I am becoming desperate. I am also struggling with physc. My husband has asked for a second opinion because he will insist on giving me meds that make me sick. sweating hot flushes and I am running out of dry clothes.
I am only able to see a new phys. in Oct. 20th so I am on alzam. premarin and pur blocker. I have been without a major phys. drug for just 2wks and I am thinking that the sweating is due to the drug citralex still being in the system. If that is not causing the problem then I dont know what it could be. Does anybody else suffer from sweating. It starts like a flash, I go hot and red in the face then the sweating starts. It is very uncomfortable. I feel cold and cannot get warm they say Imust not heap on the clothes but it is hard to not get dry When I stop sweating for a while it is great but then it starts again for no apparent reason. I wake up about 5 am every molrning and I am wet through and Ihave to tryand get dry in the cold of the morning which is horrific. The washing everyday is taking ages There is no time for anything else. My husband has been a star I dont knowwhat I would do if Iwas on my own. Has anybody else had these type of side effects from drugs. etc. I am also putting so much faith inthis botox treatment. What do we do if it does not take away the pain. Life is unbarable at times. Has anybody tried another drug onthe inside ofthe bladder for pain that works. Oral drugs just dont do it they are not strong enough. Morphine does but the side effects are sweating which is no good I have tried it. It was wonderful at first until the sweating began. If anybody has any suggestions that I could put forward to my Dr I would be very appreciative. The botox is going to cost about R10.000 in SA money. But if it works it will be wonderful and worth every penny even if the MEd Aid doesnt pay for it. God bless everyone and I pray that itworks for everybody who is going through the treatment. Love Wendy (Linaria.

[deborah bush]

Hi Linaria

Here is some information to help with Botox funding. This is the ;company that makes botox and it is Allergan and there no is 877-530-6680 fx no is 714-246-4971. You can go on line to www.botox.com or www.botoxreimbusement.com to get help. I hope this will help you to get funding for you to get botox. Let me know how it goes. They helped me to get my insurance to pay for my botox. I am doing botox and is doing great me!! Deborah Bush