After the injections

[Budgie]

HI all

I had some botox injections just over 2 weeks ago and whilst I was expecting a flare up of the pain I wasn't expecting it to be this bad. I've even got extreme soreness in the urethra. Could this be caused by the botox injections while the muscles in the pelvic floor settle down? I had the botox injected into the levator ani as I have had PFD for nearly three years and was diagnosed (rightly or wrongly) with prostatitis before that.

Has anyoe else had similar problems after the injections?

Thanks

Neil

[Flore]

Hi Neil

Did you call your dr and tell him/her about this new flare??

I have had the injections 3 times, and after 2 weeks I never had pain

[Budgie]

Hi Flore

No I haven't spoken to my Dr yet. I'm going to this week as it hasn't settled down so I'll see what he says. At least the soreness has subsided but the pain is just as bad. He did tell me to expect a worsening of symptoms but didn't say for how long. Last time it did the same but I can't remember how long for.

I'll let you know what he says if I can get hold of him this week. Not the best week to unfortunately!

Have a great Christmas.

Neil

[Flore]

I think is important to let your Dr know how are you feeling, and please, when you talk to him, let me know!!

[Budgie]

Flore

I've written to my specialist today (to make sure I don't miss any bits of information)and I've also got an appointment with my GP on Thursday 8th January. I'll let you know what happens!

Neil

[Flore]

Good luck!!, and we continue on touch!!

[Julie Smith]

Please tell me about these botox injections and what type of dr. performs. I have an apt. with pain dr. and was told he does injections and they usually help a lot. Only I don't know what kind of injections they were talking about.

Thanks and hope you start to feel better soon. Also, call your dr., he needs to know and may be able to prescible meds to get you over the hump.

Best wishes,
Julie :rolleyes: :p :) angel

[Flore]

Hi Julie!!

I have had the injections 3 times, and the places that my dr uses to put are inside my bladder, in the urethra and in the vagina

These help me with my PFD, and with pain

I think that you can find more information in this links

http://news.ninemsn.com.au/Health/story_53695.asp
http://www.ic-network.com/guestlectures/smith.html

[icnmgrjill]

Hi everyone. Julie, check out the guest lecture we did earlier this year with Dr. Chris Smith on Botox. That should answer all of your questions. You can find that at: http://www.ic-network.com/guestlectures/

Jill O.

[Budgie]

Well, it's now nearly two months since the injections and I can now give you an update. All I can say is that I am very disappointed with the results. I am still in significant pain and there's no change when sitting, it is still very uncomfortable even for short periods.

So, it's back to the drawing board for me. I am currently trying hard to find a physio who will do myofascial trigger point release but you wouldn't believe the trouble I'm having trying to find one locally. The closest one I've found so far is 400 miles away!!

[liz2]

Unfortunately, I did not get the results which I had hoped for with botox injections in the floor of my bladder. I got spasm relief for about 2 months afterwards. I realize each person's body is different and reacts differently to any medication or procedure.

I am past the 5-month mark and am catheterizing 24/7. My retention started on the 10th day post-Botox. I believe my experience is the exception rather than the norm.

During my surgical procedure, two bottles of Botox were used; that was my choice. I wonder what my outcome would have been if only one bottle of Botox had been used and if my urethra had also been injected.


I turned to Botox for pain relief, as I had very little problem with urgency/frequency and none with retention.

I welcome input from others who have used Botox.

[ICNJess]

(((((Liz)))))

I am sorry you have had such bad results. I've never tried Botox, and was wondering how well it worked. I am so sorry that happened to you. :(

Comfort hugs,
Jess

[liz2]

Jess, I like your choice of the roses. Thanks for your concern.

I know a number of people who have had much more success with Botox than I have had. For some, it has given them their lives back.

I was very hestitant to post, because I don't want my situation to scared off anyone who could benefit from Botox injections. Botox is experimental, but it may become one more tool used to "fight IC."

Currently, there just is no way of predicting how an individual's body is going to react. Maybe my procedure will help give the key as to when and if Botox is the correct protocol for a particular patient.

[ICNJess]

Hi Liz,

Thanks, I love pink roses. :)

I have to admit, of all the treatments I've seen for IC, Botox was one of the scariest...and I have the Interstim! But hey, if it helps some people, then great! :D Every treatment will have it's failures and ups and downs, it is just sad to hear that it actually made your IC worse. :(

I hope you can find something to help you.

grouphug grouphug

[Budgie]

Well, another update folks. Amazingly, since my last post my pelvic muscles are finally starting to settle and I can now sit down with hardly any pain. Fantastic. I haven't been able to do that for nearly three years!!Also, I have booked to see the physio to have the myofascial release so hopefully this will get those muscles back to normal permanently.

Just thought I'd let you know some good news. I must adit I was disappointed with the botox results and it did flare for nearly two months but now it's much much improved

[Julie Smith]

Flore and Jill and everyone on the board, thanks so much for websites with botox info. :)

Sounds to me like I would not participate at this time due to the lack of sucess.

I guess I'll get some answers from pain dr. next week.

banghead toilet :confused: :confused:

[deborah b.]

Hi Julie

I go to a doctor in Maimi, Fl for the Botox and I have had good results. I am in 3 Yeas trail study with him. They are looking more people to do it. You can PM me and give you my phone no or my e-mail addres to you. Deborah angel

[Julie Smith]

Budgie,

Hope you continue to feel better everyday. So glad you can sit!!!!!!!!!! That's the pits and what has kept me from work, restuarants, movies and going out with my friends.

Thanks for the info.

grouphug grouphug grouphug grouphug

[Budgie]

Julie

I feel for you not being able to sit. I've had to turn down so many things over the last few years because of not being able to sit comfortably so it's a real treat to be able to now! Suffering the flare up after the botox injections was definitely worth it although it didn't feel like it at the time! THe trouble is it doesn't last forever and that's why I'm going to have the myofascial trigger point release done to try and get the muscles relaxed permanently.

Regards

Neil

[liz2]

I would like to have the life back that I had pre-Botox.

[vm]

Liz - I can't even express how sad I am reading what your bladder's reaction to the Botox has been. :( I know it sounds trite, but I really am thinking of you and hoping you find some relief from this. kissing

[liz2]

I am so happy to hear about your good outcome.

[Flore]

Liz: I´m so sorry about you!!, and you know that I´m praying for you, and I hope that very soon you can have in your hands your life again!!

Budgie: I´m very happy for you. In my support group we have a patient that had last month the injections, and she was very dissapointed because she was worse with Botox, but now I received a phone call from her, and she said that suddenly she began to have relief in her pelvic floor

I had the injections last Nov, 15, and since that day I only have had 2 flares. In fact I had a very long trip, and I´m pretty good

Soooo, I hope that everybody find the best treatment that help to continue with their lifes

[Budgie]

Flore

I'm very pleased that you too have found some relief after the injections. I am still doing well and can sit and drive for quite long periods now with little or no pain. It's absolutely fantastic after 3 years of almost constant pain. Botox rocks!! ;-)

Neil