Botox

[Lori Campbell]

HI ,
Just wanted you to know last 9/9/04 ,I had botox injections to the bladder and pelvic floor. I had a very bad reaction. I started with the runs then vomitting , then the pain got so bad I could not walk , I had to use two canes and at times a walker . It was a really bad time for me and because I responded to this procedure in this way my urologist sent me a letter in the mail to never call or come to thier office again. So like usual us I.C. patients , get treated badly for no good reason and are left with no one that really helps you. It is really hard to find a good doctor that will help you and that you can trust . Because of all the bad treatment my husband and I have recieved it makes it hard to find the one doctor who will be ther for you and not blame you because you have adverse reactions to treatments and all you want is someone to help . Good luck in whatever you try just be careful .

[Lori Campbell]

Bad reaction to botox be aware and be careful.

[Lori Campbell]

Hi ,
Yes , I had a bad reaction to botox , when they injected it into my bladder and pelvic floor . I had the runs , then I started vomitting , and then the pain got so bad , I had to walk with a cane then two canes and at times a walker . This was a very bad time for my husband and I . Then our urologist who we trusted and was grateful for the I was getting for 1 1/2 years sent a letter to us to never return to the office or call the office again . So again as an I.C, patient you get treated badly for no good reason . It makes it hard because we do have adverse reations to treatments , then we lose doctors then there are no doctors to treat you . So then you have no trust for other doctors , because you have been treated badly . So be careful and be aware .

[tigger_gal]

Lori,
this dose not even sound right.. I posted this : http://www.ic-network.com/forum/showthread.php?t=20949 about botox knock off in this same topic.. please read it.. Why and what possible excuse could your doctor have not to see you because of a treatment that was bad for you?
I think I would be obtaining some research and find out exactly what was used, to cause such a horrible reaction..
sending you hugs and prayers, I hope you feel better soon.

[momw/ic]

I did extensive research into botox and rare adverse reactions etc...when I was making my decision about it and I did not see anything like this. Were you put to sleep or given sedation for the procedure? Maybe it was the med they used for that. Why would your doctor just dismiss you? Did you know you were having the problems and didn't know how to help you? Sounds like a doctor you wouldn't want anyway. Sorry your response was not a favorable one. I had the botox the past August and it has given me my life back. I still use pain management but the botox has made the meds work better and also the frequency is almost nonexistent. Just today I peed at 730 am when I woke up and did not pee again until 2 pm. I wasn't holding it - that is just when I needed to go again. I went again at 5:30pm and 930 pm. I will only get up once in the night if I get up at all. Again sorry it didn't do the same for you.

[IcyAngel23]

Lori-

I've had botox done multiple times and had nothing like that.I agree with Tigger Gal that you might not have gotten the real botox or maybe had a reaction from another drug. I'm sorry you went thru such a bad time. Sorry to hear about your dr treating you so badly. Hope you are feeling better. Sending you my prayers and thoughts.

Kristin

[Lori Campbell]

:love: Hi IcyAngel23,
Your response is very helpful , but it hard to say why I had such a bad reaction, could it just of been an adverse reaction to this botox meds. because like many I.C. patients I have had alot of adverse reaction to medicine , where instead of me getting better I got worse . So it is hard for me , I think that this is why allot of doctors do not want to treat me because of my past complications I have had . But I am sure threw time , patience , understanding and knowledge , I will be lead to the path in which my life must travel . Thank you all !!!!!!!!!!!!!!!!!!!! :)

[Flore]

I have had Botox injections many times (I don´t remember if 8 or 9 times), and I had the last time past Monday, and I never have had any reaction

In fact, in México, we don´t have many meds for treat us, so I know lots of patients that use Botox for their IC and PFD, and I never have seen any problem, the worst thing that I have seen is in 2 patients thart Botox didn´t do anything

I agree with Tigger_gal!!!

I use to have many problems with all the medicines that I take, so Atarax helps me so much!!

How many time after the injections did you stay well??????

And the story that you said about your dr is incredible!!!!!!!!, this dr is a very ugly person!!!!!!!

I hope you can handle better your IC

[Lori Campbell]

Flore ,
Thanks for your input . Just to let you know I had no improvement . I changed drs. and went threw a urinevideo dynamics test , and had another bad flare up that was bad for an month then started to get better . Since then I had my appendixs out , in july , and at times my I.C. is okay and then at other times I am laying around with my heating pad trying to do the best I can . Which I feel we all try to do the best we can with the situation that we find ourselves in , with our disease . Over the summer I looked into running a support group . I got all the info. and input I needed and had the first meeting in 9/05 . on 11/11/05 , we had our 3rd meeting with a guest speaker , who was very good and a rieki master who worked on participants , but it was alittle sad because there was only 7 people in all . That is even counting the speaker ,myslef , and the rieki master person . But I am sure with more hard work and networking our support group will get bigger and better . So by having these support group meetings has helped me also . It lead me to this web site . I have now found another specialist for my I.C. , who I will see on 11/22/05 , and with all the knowledge I have now , I feel that this dr . will be more helpful .

Thanks again and take care ,
Lori
P.s. Have a Happy Thanksgiving !

[Flore]

Lori:

I have an association in México too, and I think is a great association. I´m working with 3 laboratories, and I´m traveling so much, learning about IC, incontinence and vulvodynia, and giving talks about incontinence

I have now maybe 50,000 hits per minth in my web sites, and do you want to know haw many patients do I have in our monthly meetings????????????????? maybe 12

I have had many interviews in radio and in magazines, and 3 programs in TV, so after the programs I use to have many patients calling me by telephone and in the meetings, but the problem is that many of them think that I´m going to give for them meds or visits to the dr for free.............. and of course I cant do that, and the majority don´t come back

Anyway, I´m so happy making this work, and I´m sure that my diseases are more easy to drive since I´m working in ACI México

Continue with this wornderful work and your spirit and soul are going to be very healthly, and because of this, your bladder and other problems are going to be better too!!