Double duty

[IcyAngel22]

I'm having botox done again on Thursday and they are taking the interstim out at the same time. Thanks God. I hope everyone had a wonderful holiday. So I'm hoping to recover fast to enjoy the rest of my Christmas vacation from school. Has anyone had both procedures done at the same time.


Krisitn

[ICNDonna]

I'm sending healing thoughts your way. I hope your procedures go well.

Warm hugs,
Donna

[windwalker]

Haven't had either done, but wanted to wish you well on your proceedures!!! Let us know how u r when you are able!!!
Dawn

[Indy]

I am dying to find out who does Botox in California!

[SharonA]

:grouphug: :kissing: Krisitn.

[IcyAngel22]

Thanks to everyone for their kind words. I'm just getting ready for Thursday. I went out and bought tons of pj's and backless gym shoes because I know I won't be able to bend down after the interstim comes out for a little while. I'll let you know how it went when I can get back on my computer. I want to wish everyone a happy new year.
Kristin

[Flore]

Good Luck Kristin!!!!!!!!!

[IcyAngel22]

I'm very nervous. I'm had the botox before and the interstim surgeries but not at the same time. My doc wants to limit my recovery time by doing it in one shot. It has been so long since my interstim almost a year and a half. So it has been awhile since I was cut open. I'm just worried about the pain.

[IcyAngel22]

Thanks Flore for your support. I hope things are going well for you.

[IcyAngel22]

Ok well I'm feeling better since the surgeries. They took out my interstim and found the lead was pressing up on my nerves. It was causing horrible back pain. I'm doing well and I'm on bed rest or a few more days. I'm enjoying the rest before school starts the 19th. Happy New Years to everyone.
Kristin

[andcohen]

Hope you are doing well Kristin :grouphug:
How many times have you had the botox? It is in trial over here in Australia & seems to be alot of negs & pos for it, it is very confusing knowing whether or not to give it a go????? I sorry the interstim didn't work for you that seems to be another thing that works for some & not for others..Although we don't have that in Australia so I won't worry about that one :headbang:
Anyway get plenty of rest & take it easy whilst you get the chance
Good Luck
Andrea :angel:

[windwalker]

Glad you are feeling better, Kristen :) Just keep resting as much as ya can :)

[IcyAngel22]

Andrea-
Thanks for your kind words and hugs. This is my second round of botox. I don't know if it is in a trial here or not. I'm not in one. My doc did my interstim before they started trials so I'm getting the newest treatments out there. There are a few people who have been getting botox for a few years like Cindy and Flore. Flore is in Mexico and I forget where Cindy is from. I here from others that most doc won't do botox and I feel sorry for those who were told no. My Ic is very severe and without botox I wouln't be able to function. I still have pain but my freq/urg. is down to 10 times a day and I can sleep thru the night for the most part. I never knew what a good nigt sleep was until botox. I tried everything and nothing helped I was almost out of option and my doc suggested botox. Botox has worked for me when nothing else would. People are scared of retension or just afaid of the actual botox. I did botox because I needed something to help. I was deparate and would have done anything. I just took a leap of faith and trusted my doc. Who has kept my best interest at heart the whole time. It may not work for others but there is nothing to lose. It is temporary but lasts 4-6months and each tinme it should last longer.The only negative side effect is rentension but it happens in less than 1% from the research my doc has and lasts maybe a week or two. A pill can help so you don't need to catherize in most cases. To me botox has less side effect than anything else I tried like elmiron( I lost my hair and became violently ill) heraprin instillations burnt my hair and only helped for a day or so, pelvic floor physical therapy I was in horrible pain for days after and I went twice a week, Interstim my back hurt ,I got shocked a few times, hurt to have it on and many other problems. You just need to weight your options. I had nothing to lose and everything to gain. My advice would be do some research of your own talk to other botox users. I'm 23 and I wanted to know about the long term side effects and as far the research my doc did there isn't any. I only get botox is the bladder. I wanted it in the pelvic floor which is risky and there isn't much to say it works. you can run in to problems there but in the bladder is fine. I was worried because I want to have kids but it won't effect that at all. I know I sound like a botox poster women and I am. I am living breathing proof that it works as are many others. I only promote botox because it changes my life. I still have pain but I can function. I don'r feel depressed as much anymore. I get flares every once in a while but botox can't help with everything. It get me back to about 80% and before botox I never got out of bed(other than to the bathroom) I was in so much pain and I didn't sleep much. I can sleep 8-9 hours with one trip to the bathroom and pain doesn't rule my life. I want others to find botox as an option and not to fear it. Since IC I've been fearless in my fight against it.I won't let IC run my life. PM if you have questions. I invite anyone with questions to ask them. Even if you aren't getting botox but are curious ask.
Sorry this is so long but I'm passionate about botox.
Kristin

[IcyAngel22]

Winwalker-

Thnaks for think of me. You are very sweet to reply. Take care and hope you have a better year in 2005.

Kristin

[windwalker]

:) Wishin you a great 2005 also. Feelin ok today?
Dawn

[CinSin]

Hi Kristin,

I am so glad you getting relief from the Botox. I believe it did change my life as well. I have had it five times (bladder, urethra and pelvic floor) and it has helped with PFD and VV as much as it has the IC. By the way, I live in Texas (about 45 miles southeast of Houston, on the coast).

I would encourage anybody with IC to read as much as they can about their problems, consider all their options and most importantly, always keep an open mind.

Cindy

[andcohen]

Hi Kristin,
Thanks for the reply & I hope you are feeling OK. It is great to have peoples advice on the botox as I guess that is the only way to really find out how well it working for IC patients. It is something that I would consider having done but one again am waiting to hopefully see a new DR early this year so I want to discuss it with her. She was a guest speaker at a support meeting that I attended late last year & gave some good advice on it, so I will wait & try to get in & see her when I can.
I really suffer with alot of bad pain so I was hopping that botox would be able to help with that, but you said it hadden't helped much in the pain area, is that common or were you just unlucky????
Anyway thanks for the help & I'm glad you have found something that helps you.
Take care
Andrea

[CinSin]

Hi Andrea,

Botox dies help me with pain! I still have pain and even little flares. Only now, I can manage the symptoms and still be functionable.

[jackie33]

hello everyone.. i just started accupunture and accupressure.. my urologist wants to use that interstim, but i am not doing it .. i want to try biofeedback.has anyone tryed that??? i already had 24 treatments of dmso. and i cant take them any longer they are not helping ... i am on elmiron and hydroxine and i am trying to get pregnant so i need my bladder to feel great before i start with my fertility treatments.. can someone please help me ??/ thanks jackie edwardi

[IcyAngel22]

Andrea-

Botox helps with pain too. The pain is now managable like Cindy said. Godd luck.

Kristin

[IcyAngel22]

I'm hearing from alot of people that it is hard to find a doctor who will do botox. I think everyone here should offer info as to where they live in the world and doctor who may be able to help others. I live in Chicago so my doc does botox and is the sweetest doc I've ever met. He really cares.
I think if some of us have the opportunity to help others get botox done we should help.
So I'm asking everyone to reach out and share where you can get botox done. I know of a women is looking for a doc in California to do botox. I know this may sound weird but I want to help others get the chance that I was able to.
Kristin

[jackie33]

how is this botox procedure done?? and does it hurt.. is it safe?? thanks ..jackie

[CinSin]

My uro is Dr. Christopher Smith who did the Q & A for the ICN. He is in Houston, TX. I think he is very nice and has tried to help me more then any other uro I ever had. I know of another three in Houston that does Botox too.

Jackie - From what I understand from my uro - they inject the botox just under the tissue (like getting a TB test shot). I don't think it hurts any more then getting a cystoscopy and hydro. But PM me with any questions and I will be happy to talk more with you.

Cindy

[IcyAngel22]

Jackie-

I agree with Cindy. I had my second botox done Dec 30 th and I'm just sore. I found that I'm in pain for a fews weeks after but notthing to bad. After about two weeks I get relief from the pain, freq, and urgency. Some people find results sooner. The second time around kicked in faster and should last longer than the first.( Which was 4 and a half months)My doc is in Chicago. Dr Steven Pierapoli. I think thats's how you spell it. He is a young doctor but it up on the current treatments. I urge anyone interested in botox to ask your doc. As Cindy said anyone can PM me if you have any questions for me. Cindy helped me when I wanted to know what to expect. She is a good resource.

Kristin

[jackie33]

thanks for everything and all your advice.. my urologist wants to do that interstim but i am not doing that.. did u ever have that done.. thanks again jackie

[CinSin]

I had the test stim for the Interstim but couldn't stand it - so they just pulled it out. I hear it helps so many but I can't stand anything to vibrate on me. I have tried everything else and Botox is the only that has helped me.

Let me remind everybody - Botox isn't a miracle cure - you do still have symptoms. It just made it easier for me to manage mine.

Good luck and let me know if there is any questions or thoughts I can help you with.

Cindy

[IcyAngel22]

Jackie-

I had the interstim and I just got it removed after more than a year. It worked at first but after a while it didn't work as well.

Kristin

[Flore]

Hi Kristin!!

How are you feeling after the last injections??????

[IcyAngel22]

Flore-

I'm feeling better a little bit everyday but I still have pain. I can sleep thru the night without bathroom trips.How are you doing? I know you are close to another botox so good luck with that. Take care of your self

Kristin

[CinSin]

Hi Flore,

How are you doing? Email me - I have several new things to tell you about. The best is my son Phillip will be home from Iraq February 15th. He has been gone a year this time. I am so excited.

Cindy

[Flore]

Hi!!!!

Kristin: I have been in a flare for may be 1 week. I have to travel to Swizterland next March, 5 because I´m going to ateende a media briefing, so my dr told me that if in 15 days more, I continue bad, he is going to to another hydro and electro-fulguration. Botox is going to be in may be 4 months more, because I was without it for 8 months in the last time

Cindy!!!!!!!!!!!!!!!!!!!!!!!, my dear friend!!!!!!. I have been writting may be 5 emails, and the emails that I have from you I replay in the moment, so I don´t know what is the problem!!!!, can you write me to: flore@aci-mexico.com please!!!!

I have many things to tell you!!!. I´m very bussy, in my work we have some problems that I have to manage!, and ACI is growing up so fast (thanks God!!)

I´m working with the writters of a TV Channel here, and they are going to show my story and another patient´s story too!!

My daughter had a car accident (she is fine, she didn´t have any problem) but her car is going to be in the agency for may be 2 weeks more, SO I´M THE CHOFER AGAIN!!!!

Bye!!!!!!

[IcyAngel22]

Flore --

It sounds like you are very busy.I'd like to hear more about your TV debut. Maybe they will air it in the states too. Congrats on getting the word out. What is electro-fulguration? i've never heard of it. What is it suppose to do or help. Take care and rest. I hope your flare passes. I've been in a flare too.

Krisitn

[icnm]

Hi Cindy,

I've tried to e-mail you, but it is returned. Have you changed addresses? How are things going?

Teresa

[Flore]

Hi Kristin!!

Yes I´m very bussy all the time!!

I know that in California and Texas you have a TV Channel that names "Azteca America", well, in this channel is going to be the show

An actors are going to represent me, my family and the people involve in my life, like my dr, maybe the friends that have been with me, etc.. At the end of the show, I´m going to talk about my association and invite to the people to visit my web site

I don´t know when is going to be the program, I think in 1 month, and after this, they are going to show the story of another patient that has vulvodynia for 7 years, and 3 months ago had the IC diagnoses. Both of us are treating with Botox

The electro-fulguration is a treatment for burns the Hunner ulcers, and in México is very common to treat the trigonitis (??). I have very inflamated my trigon, so my dr uses to burn a little piece of it to helps with sensation of the bladder full

Are you ok now???

[IcyAngel22]

Flore-

I'll be on the look out for you and the show. I don't have hunner's that's why it sounded new to me. Wow sounds like that hurts. I'm having alot of pain but my freq/urg is much better. How are you doing?Take care of yourself and keep in touch.

Kristin

[Tunia]

Hi all...
Just posting to add a doctor to the list of those willing to inject botox. I'm a patient of Dr. Emanuel Friedman in Natick, Massachusetts (at Leonard Morse Hospital), and he has suggested the use of botox in my treatment. While I don't have a lot of information about it, it does sound promising for pain and I'm planning to go ahead with it. He's also suggested the Interstim, but I'm concerned that it will not alleviate my intense pain.

Good luck to all considering and using the botox. Please let us know of your hopeful progress.

[Flore]

Hi!!!

I was in the worst flare in my life!!!!!

Since I wrote my last message, I was with pain, but manageable. The problem began Thursday, 3th. I was very bussy, with many problems in my work, etc.. so when I went to sleep I took the Neurontin and Atarax together (I have to take the Atarax in the afternoon and Neurontin at sleep time), so that night I slept like a baby!! since 9:00 pm until 8:15, and I didn´t went to the bath, so when I woke up I couldn´t pee for may be 5 hours. My dr was in a conference so I called to another, and surprise!! he wasn´t in the city either!!. Y tryed to cath my self, the problem is that I can´t see my urethra, and I was hurting my vulva

Well, may be at 1:00 pm I was with my designer in my office and Oh my God!! I felt like an orgasm, it was terrible, I was very ashamed, so I had to ran to the bath, and for my surprise I began to pee very well. I tought "My husband is going to very happy with this!!", the problem was that I was having this "sensation" maybe 7 or 8 times A DAY!!, can you imagine this??????, I was very hurt, everytime hurted very very very much!!!!!!

I was feeling this since Thursday until Tuesday. I called my gyno, because my vulvodynia was in the top level too, and I wasn´t able to recognized if all the pain and symptoms that I was having could be because of my IC, my PFD, the vulvodynia or the endometriosis or all together. When the gyno saw me he said "I think the problem is your bladder", and he sent me meds for the orgasms sensations a calcium block (??).

I continue very bad on Wed, so next thursday I went to my uro´s office, he saw me and sent to me to the hospital very soon

When I arrived to the hospital the anesthesiologyst was waiting for me and he put me to sleep in that moment

I was in the surgery room for allmost 2.5 hours. When I woke up my dr was with me and he told me that he thought that the problem was the pelvic floor, in fact, he has a vial for an emergency, but he said that the problem was the IC, and he never had seen a bladder like mine. I was in a complete hemorrage (??) I had pint point bleedings in all the bladder, and he said that I was bleeding for a while. He didn´t want to inject Botox in this time, he said that maybe in June

I was 2 days in the hospital after the surgery. Today (2 weeks later) I´m very well yet, I continue with bladder spams, but I reutrn to my life again!!!

This was my story!!!

[IcyAngel22]

Flore-

Sorry to hear about your flare. Sending hugs and prayers your way.

Kristin

[CinSin]

Hi Flore,

So sorry to hear about your flare - please email me to my personal address with all the deta.

Cindy

[deborah bush]

So Sorry you having flare!!! I hope you feel better soon. Deborah Bush