Botox - Side Effects (am having it done 11/3!)

[laurafitz20]

Hi! I am having botox injections on my bladder on Friday and am very nervous about it. I am doing it for my pain with I.C. My doctor had said that the only side effect could maybe be that right after the surgery I will physically not be able to urinate, so they would have to put a catheter in for a day or two. Has anyone else had this done & can you tell me about your experience with it? Also, my doctor has reassured me that incontinence is not a factor with Botox injections, but it still makes me nervous. I am a 26 year old active person & would not handle that well at all. If anyone has any info I would GREATLY appreciate it. Once my procedure is done, I will post my experience in case anyone else is debating on doing Botox.

[Sunflower2]

I don't have any info for Botox yet. I may try botox treatment pretty soon if everything else fails. I know that you are nervous about this new treatment. I hope it will help you a lot. Let me know how things are afterward.
Good luck!!!

[deborah bush]

Hi

I have had botox done and been doing for about 3 1/2 years. I have been little retation from the botox. Are you paying for the botox or is your insurance paying for it. I was in 3 years trail study and know I have to pay for it. But my insurance is paying for it and I have to pay a co-pay for it as $50. The doctor in Miami is still looking for Patients for there trail study that I was in. You would have to pay for your transportation down there. You would get Botox every 6 months. If you want his name and phone no you can e-mail me at deborahbush1952@yahoo.com I hope you do okay with your botox. Deborah Bush:hi:

[Jenn Darling]

Hi Laura,
Good luck tomorrow. I will be praying for you, for sure. A cath for a day or two is all I have heard that could be yucky about Botox so I think you are going to be great after this!
Is your insurance paying for it? Ii hope you don't me asking. I am having trouble getting mine to approve it. I am fighting it but lost the appeal. Still working on it, I will bug the hell out of them until they say yes!
I cannot wait to hear how you did. Good luck.
Jenn

[Vicki]

Hi! I am having botox injections on my bladder on Friday and am very nervous about it. I am doing it for my pain with I.C. My doctor had said that the only side effect could maybe be that right after the surgery I will physically not be able to urinate, so they would have to put a catheter in for a day or two. Has anyone else had this done & can you tell me about your experience with it? Also, my doctor has reassured me that incontinence is not a factor with Botox injections, but it still makes me nervous. I am a 26 year old active person & would not handle that well at all. If anyone has any info I would GREATLY appreciate it. Once my procedure is done, I will post my experience in case anyone else is debating on doing Botox.

I have had the botox in my bladder and I went home that day with no catheter. I definitely had hesitation but no complete retention. However, we are all different. Unfortunately, I was not helped by it. -Vicki

[Katrina]

:welcome: to the ICN Laura and Jean!
I suspect you have had your botox by now but I would just like to say :hi: and that I hope it really helps and thanks for sharing your experience here!

Although I haven't had botox I have had a catheder for a few days after my hysterectomy and although I hate the feeling of having to go that I get from the cath it was tollerable. Since my pfd is worse than my IC these days a catheder is a bit of a problem but I find the best thing for me is to stay as relaxed as possible so I suspect that with just having botox that may be a lot easier :) Please keep in touch!

[Jenn Darling]

Hi Vicki,
I am sorry to hear that it was not a sucess. My heart goes out to you.
I did, however read a study today in fact that sometimes it takes 5-7 days for the botox to take effect. Here is the link http://www.ic-network.com/guestlectures/smith.html scroll down to the question What is the short term versus long term therapeutic value of a therapy like BOTOX? and read the answer. I will be praying that it does work in the next few days. Please keep us posted.
Hugs,
Jenn

[laurafitz20]

Thank you so much to everyone how wrote me words of encouragement. I really appreciate it. I had the botox procedure done yesterday & I already feel a 'pressure' relieved from my bladder & urethra. I came out of the procedure wonderfully. They put me out with general aenesthesia(sp?) at 9:00 am and I was ready to go home at noon! My Doctor put 5 injections in my bladder and 5 injections into my vagina wall to release my pelvic tension. I am still on vicodin because it somewhat hurts to go to the bathroom (because of the cystoscopy), but I am definitely already noticing the pressure & tension released. I will keep updates on my botox for anyone considering it.

As far as the finances go....I TRIED SO HARD to get my insurance to pay for it, but they kept stalling. I am employed at a company with good insurance that would pay for everything but the actual botox medication. My doctor sent a petition in for them to deem it a medical necessity so they would pay for the medication, but I did not get the grant in time for my surgery date. I was debating on putting the procedue off, but I have been so uncomfortable lately that I decided to pay for the botox meds. My doctor used 200 cc's so I think it will be about $1600 out of pocket. I am very fortunate that my parents are in a place that they will help me out financially with medical expenses.

As of right now I am so glad I have given Botox a try. I have tried so many other things and was somewhat feeling hopeless. I am going to start seeing my physical therapist again so she can help keep my muscles relaxed. I am also going to continue taking Elmiron 3x a day & benadryl at night for inflammation. Hopefully this combination of things will keep me on a path to FULL recovery someday!!

[Jenn Darling]

Hi Laura,
It sounds like you are doing so well and I am so happy that it worked for you.
You are lucky to have such supportive parents, mine...well, lets just say they change the subject when I talk about my bladder.
As far as insurance, you may have to front hte money but I have heard of people actually getting paid back by the insurance company ... you can appeal their decision and maybe they will change thier minds...you never know!
I know what you mean about feeling hopeless...I have felt hopeless for years. I have done everything...some things I have done multiple times. I am getting ready to have the interstim taken out in a week or so...second time around but it failed. We are appealing the insurance companies decision right now and hope botox will be an option in the future.
Well, good luck. I wish you all the best. Keep us posted on your progress. I am sending prayers your way for a speedy recovery!
Jenn

[irishnan3]

Laurafitz20:
Sounds like you are doing well. I have been reading about Botox and it sounded very intresting. Came on today to see if there were any blogs on it...please keep us up to date on your progress, my doctor is very down to earth on trying whatever helps us IC patients. At this point I wouldn't care if Insurance pays, it would help mind you, but it would also be worth paying for if it relieves this horrible pain. Good Luck on you continous progress.:woohoo: I hope it keeps going in the positive direction.:angel:

[akrose]

Hi Jenn- I just went through a total abdominal hysterectomy for ovarian cancer, it was sitting on my bladder this past sept 2006. I just completed 3 chemotherapy treatments, and I am done with that. Since the chemo, my bladder and urethra have been painful with urgency. I am on Elmiron and elavil. The uro who diagnosed the ic wants to try interstim and botox. I have already been thru so much since August 2006 that I don't want to try anymore things that don't work for urinary pain. What I really want is my bladder and urethra removed. Please help me decide what to tell this doc. thanks, Aileen
p.s.I have read all the horror stories of both treatments, and I feel that the problem is that they mask the real problem - which is an inflamed bladder/urethra that don't want to hold urine. ( I am a nurse practitioner)

[Jenn Darling]

Hi Aileen,
I am so sorry for what you are going through, my prayers to you.
I had a similar year last year, they cut me open for every reason under the sun. I too had a hysterectomy but not because of cancer. My bladder and urethra were not happy with the surgery, it took a long time for them to get under control.
I think the last resort is having your bladder and urethra removed. I too would like that done, however we still may have all of the same symptoms/pain after the fact (phantom pain). In fact, the doc told me (when I got fed up and asked for the removal) that you could still feel the urgency...that would suck to go through all of that and still feel just as bad as you do know. So this should be the last thing you do, after you have tried everything else. (just my advice from my own similar experiences)

Next, about the botox vs interstim. Let me first say that the botox has a much better sucess rate. And that the interstim will NOT help with the pain you are having. Trust me, I have had two interstims and neither helped with pain like promised. In fact, it didnt help me with frequency and I am left with permanant damage from the surgery. I will explain another time. Please don't let this scare you though, because many women get a lot of relief fromt he interstim...look all over these message boards, you will see. But dont be fooled, this won't help your pain, it will help with urgency/frequency. I pee at least 60 times a day and when the interstim was working (for a week or so) I was down to at most 30 times per day. I would say that was a success! For sure. It was the doc's fault that the interstim didnt work for me, not the stimulator itself...keep that in mind.

On to botox, according to my uro botox has a 95% sucess rate at relieving pain and urgency. I would say that is wonderful. Most insurance co do not pay for it yet but ask anyway, if you get a yes it may just be on appeal. You can ask your do to inject the botox directly into your bladder and urethra and it should help with the pain. I am fighting an appeal with my ins co to approve this treatment. I don't care what the side effect are, or what risk it causes me...whatever I need to try it just once. It is reversible and it just may be the one thing that helps.

I understand not wanting to try any more. I feel the same way sometimes and then I get all geared up for a fight...I want to win the battle over IC because I have a 13 year old son who needs me to. Some days that is easier said than done. In the past two years, I have tried everything and I do mean everything and nothing has worked. I have had surgery 12 times with another coming up on wednesday. When I feel like giving up, I just look at my son and realize...I have to keep going and try something new (no matter what) for him.

I know there are horror stories out there about all of the IC related procedures/surgeries. I know it is tough being a guinea pig. And I agree, the doc's mask the real problem with all of the treatments but until they come up with something to actually treat IC they need to use treatments that help with our symptoms. Don't let anyone talk you into to doing something you don't want to, its your body. My advice it try one thing at a time. Let a good amount of time pass by and see if it worked for you. And do the treatment first that you think would best work for your symptoms (starting with the worst symptoms). If it were me, in your shoes I would begin with botox and see if it works, it is much less invasive than the interstim. And you primary complaint is pain, the interstim is less likely to help you with that.

Good luck and keep me posted on what you decided. if you would like to email me, darling@nycap.rr.com is my email address.
Jenn

[HURTENJILL]

Hello everyone..... I have not been in this sight for quite sometime... but I new that I could come here to get some great feedback and support from all the IC'ers on this site. I have an appointment to get Botox injected in my bladder and the walls of the vagina on Dec. 7th. I was very worried about the side effects from the procedure and the time I would need to take off of work. I was told that there are virtually not side effects, except for flu-like symptoms afterwards. I felt like I was being a bit rushed through my questions and was not supposed to be concerned, but I am. The doc also said I could go back to work the next day. I have an hr. drive to work and back..... Now I have read some threads stateing that I may have to catheritize myself for a day or 2. I do home installations now... so that is not a problem..... I just want the doc to be honest with me, and let me know everythig I need to know. I'm not scared, I just want the facts. I dont need anyone to down play this whole procedure. Like alot of you IC'ers we have all been through a lot of pain and struggles and I can handle the truth. Did anyone else have Flu like symptoms or any bad reaction to the Botox shots? Thanks for your help. Hurten Jilly PA:help: :help:

[kimberlyJB]

I am ready to explore this as a valid option at this point. The last time I saw my urologist I mentioned it to him but I don't remember him thinking of it as an option for me. I understand that it's a last resort, but at this point, I feel I may be getting there.

I have had IC for 8 years. I have been on Elmiron - currently back on it after a two month hiatus, I have tried installations, pyridium, and all the other myriad of pilss for overactive bladder, estrace cream.....antiobiotics on occassion, I stick to the diet, but my symptoms just seem to be getting worse and worse. Sometimes I have week or so where they are manageable - meaning I am still going every hour or so, and getting up about 4 times at night, but they're manageable, but it doesn't last. I know this may sound mild compared to some of you, but my symptoms can be like this one day and then the next three weeks will be constant pain and going to the bathroom every 15 minutes all day and almost all night. On Saturday I almost walked into the ER because it all just hit me at once and I didn't think i could take it anymore.

Today the searing burning pain and frequency urgency continues at a level that had bludgeoned me into submission. So what I need to know is how many more treatments do I have to try before I can go for the botox. It doesn't sound nearly as scary as I thought after I read the posts on this page.

I am ready for some relief. after eight years, I am willing to to handle the risks.

Also, what is the best method for finding a doctor to perform it. I saw somethign about a trial in Miami but got lost and now I can't find the post anymore. Is a trial the better way to go or is it okay to get a referral from my Uro (who i only half trust)?

So many questions. I think I will also check with my gyn/family practitioner. I do trust her.

anyway any help is appreciated!
kim

[deborah bush]

Hi Kim

I was the one that posted about posted about the trail study in Miami, FL. It is 3 year study and you get botox every 6 months. You will have to pay for you transportation to Fl. You can e-mail for more information deborahbush1952@yahoo.com Deborah:hi:

[deborah bush]

I have been taking botox for over 3 1/2 years never had flu like symptons. The only problem I had was some retation but not bad. I am getting my botox injection in the doctor office know. Deborah

[laurafitz20]

Hi All!

I am the one who had botox injections 11/3. I had injections in my bladder & vagina wall. My recovery was great! I did not have any problems until about 5 days after the procedure. Then I started having some problems urinating. I still somewhat feel like I have to go ALL the time & I try to go, but then can't. I try to relax myself & usually I can then go. I also got an actual UTI from the cystoscopy, so I have been on anti-biotics since last week. I am finally feeling better again but still cannot really tell if the botox helped 'cure' me. I do think it has done something though, what exactly I don't know. I still do not know for sure if my insurance is paying of the botox medication but am going to cross that bridge when I come to it. The sense of 'urgency' I am having is sort of worse than before the procedure so I really don't know what to think of that. My dr says that the botox would not cause that so who knows. I meet with my doctor on Friday afternoon & I am sure will have more answers then. So that is my update so far...I saw a post on this that someone was feeling like their questions were not being answered. I would say find a new dr. My doctor sits down with me & answers any and all questions I have until I completely understand what is going on. After going to her for 6 months we are sort of friends at this point and I know she wants to cure me of all this. I will post my update after my meeting with the dr Friday as then I will know more what is going on with my body.

[ICEL]

Hi Deborah.

How was the Botox done in the office - The first 2 times I had it done, I was in the hsp under anesthesia. Also, how many injections and how many cc's?
Thanks - Ellen

[kimberlyJB]

Can doctors control for the retention by using a lower amount of cc's?

[deborah bush]

Doctors can lower the amount of the botox that they are given to the patients. So they will not get the retation. Deborah Bush:hi:

[Angeles]

It'll probbbably be a good idea to go easy the first time (lowest dosis), use it as baseline go higher if needed next time (Botox is an option I keep in mind and that's what I would do)

[Sheryle]

My insurance turned me down for coverage of the Botox injection procedure. Any suggestions on how to get them to believe it works? I did send a letter of appeal.

[deborah bush]

Hi Sheryl

Give me a call!! I have been trying to get a hold of you. Deborah Bush

[Sheryle]

Deborah,
I am sorry but I have misplaced your number. The best time to call me is around 8 in the morning. Thanks

Sheryle