First Botox Injections!

[louise]

Hi,

I was here a few weeks ago and I had my first series of Botox injections last Friday afternoon. I had Versed for sedation and Demerol for pain. I was actually almost totally awake! The uro did the bladder and in the vagina for the pelvic floor muscles. She hit the areas where the pain was the worst and put the Botox there. She and the nurse said I did very well so that's something! The uro said I would probably have my next treatment in six months. She used 170 of the 200 units of Botox.


I find I am having a lot of pain and actually just got back a little while ago from my GP for a Morphine injection but I just wanted to post here briefly. I have noticed that I am not getting up in the night as often so that is an improvement. But I did want to ask any of you that found you had problems with retention if there is anything you can do about it. I feel as if I have to go - pressure - but when I push nothing comes out! I am able to go at times and sometimes even I will pass quite a lot of urine. But it is the other times that concern me.

I wanted to ask ICSmiles how you are doing and how long it has been since your injections. We had exchanged a few messages a little while ago. Thanks very much for any advice.

Retentionally Yours,

Louise

:bunny:

[lally310379]

Hi there,

I had botox last week...and since then I haven't been feeling great. I've got really bad retention - am only peeing about 25ml-50ml. I can use catheters but it increases the chance of getting an infection. My uro told me it will wear off in a few weeks...but I have noticed a decrease in my frequency...it's just the feeling of not being able to empty my bladder is really annoying!!!

[louise]

Hi Lally,

It has been about 2 1/2 weeks since my Botox injections into the bladder and vagina (170 Units) and I am still experiencing retention some of the time but I had it quite bad the first week to ten days. Also, I am experiencing a lot of sharp stingy pain which feels like it could be an infection so I have submitted a sample to the lab as of yesterday.

For those of you who have had many series of injections, do you recall how long the pain lasted after the injections and how long before you really noticed relief from the pain.
With this being my first Botox I am finding the experience so far to be not that great. I have also noticed I sort of feel like I have the flu and I have been depressed at times.
I don't know if that is due to the Botox itself or just the continuing and severe pain. Any advice and information would be appreciated from those who have been getting the injections for years. Thanks very much!!

Louise

:bunny:

[jleblanc]

I had Botox on May 11th, and the first week afterwards was awful. My frequency and pain were way up. It took several weeks to settle back down.
At this point, frequency is somewhat diminished at times, but not always. The past several days have been really bad, and I have found that I have to force myself to urinate, which in turn seems to be aggravating my bladder even more than usual. This has been happening since the procedure. I had an ultrasound to see how much I was retaining, and it was not too bad. Still, I feel as if I need to go now ALL of the time, not just MOST of the time, like before. I am not sure if I would do this again, although I know that a lot of people have had much success with it.
I don't want to scare anyone away from trying it, and as it is not permanent, I still feel it is worth a shot if conventional treatments are not helping. I may try one more time to see if helps any more, but that will probably be about it. I am now seriously considering the Interstim.

[louise]

Hi,

Thanks for your post. You are about ten days ahead of me with the Botox but we sound like we are in the same boat!!

May I ask how many units of Botox you had and where it was injected. I am thinking about like you, but I am not sure if I will go through this again. I am going to have to get a lot of pain relief first. I wish you good luck and I hope you continue to improve.

Louise

:bunny:

[elamar]

I got my pelvis and back botoxed in mid April. I had a terrible recovery period. My vagina burned and hurt so bad, it was worse than recovering from childbirth. My frequency and urgency went way up and I thought I had a uti. I had my first follow up with my usual doctor (not the one who did the botox). She claims 80-90% of her patients get "post botox rebound" or something to that effect, basically that most of the patients go through a period of higher frequency and urgency. She asked why I wasn't taking urelle! Well, duh, the doctor who did the botox didn't presribe it or tell me that was a common side effect. The doctor who did the botox acted like it was no big deal and I'd feel great real soon. Not so. I also got the rude awakening of insurance not covering certain parts of the procedure and still had to pay almost $1000 out of pocket. The only thing that is helping me now is I started with a pelvic physical therapist a month ago. She was totally shocked that I wasn't sent to her for an evaluation prior to getting botox. She said my problem is my joints are too loose and botox isn't going to do anything for that. The therapist is awesome and is making me better. She pretty much feels that I don't have IC (which I always felt, but doctors kept telling me I was in denial), she can see real issues with my back and hips. She does a combination of chiropractic like moves and stretches, and massage. She can see my t-12 disc in my back is out and pops it back into place, and later the urethral pain is gone. After every appt. I go longer without the urge to pee. Unfortunately my joints keep slipping out of place, but I have excercises to do at home to help strengthen the muscles to try to keep the joints in place longer. I also have to wear a lift in one shoe since one leg is shorter than the other, she tells me this can really be a cause of urethral pain. I also wear an elastic belt around my hips to help pull them back into place and pull the tailbone down. She keeps telling me my tailbone is swollen and is also a cause for symptoms and to ice it everyday. I wish I never had the botox done. The only good part is at least it isn't permanent and will be gone soon. The doctor who did the botox first offered the interstim - there's no way I would ever do that after reading about it on these boards. All of my tests came back negative for IC, but I was diagnosed based on the constant sense of urgency/frequency and urethral pain. I always got worse when something was done to my bladder like instills. I reacted badly to Elmiron. I just knew things weren't adding up. I've had more relief in this past month with the physical therapist than in the last 3 years when all this started as a uti out of the blue. Things just didn't add up. Sorry for the long ramble. I was going to wait to post about this to make sure the therapy was working. It's so validating to finally hear someone say "yes, I can see there is something physically wrong with you, and together we can fix this". It's so much better than hearing you have a wierd bladder condition with no cure and you just have to learn to live with the pain. I'll post later this summer on how things are going. One big lesson learned is anyone who is considering botox should first be evaluated by a pelvic physical therapist and see if it is necessary. It was a huge waste of time and money for me. I had my last follow up with my doctor and she told me to come back in three months - I don't plan on ever going back. Why should I keep throwing money at a doctor who kept me from being well - I should have been sent to the therapist well over a year ago. I'm just so fed up all around. I guess it's just another life lesson learned.

[mpowner79]

I get Botox injections regularly on my pelvic floor muscles and on my stomach to calm the muscles down so my belly stops distending. I have been getting these injections for almost one year. My doctor said that when your pelvic floor muscles are tight it does not allow your bladder to relax thus causing more pain. I am always dealing with having a bladder infection and flares that I cannot honestly say that the injections works. I have been getting them regularly for the past two months and I see no improvement.
Good luck to all!!:rolleyes:

[louise]

Hi, I had my Botox injections into the bladder and vagina on May 22 and my first ten days were miserable. The bladder and pelvic pain were much worse, I had terrible retention and I was very depressed. Then around June 9 I developed a UTI and am on Cipro for one week. So I am not sure how I am feeling! I will give the infection some time to calm down and then hopefully I will be able to tell if the pain is better.

Do you mind if I ask where you had the injections? My uro prescribed 200 Units of Botox and used 170 between the vagina and bladder.

Are you feeling any better? I am really hoping you get better as well as I do since I am running out of treatments.

Take care,

Louise

:bunny:

[mpowner79]

Hi,

I received the injections on my stomach and my pelvic floor muscles. The ones I receive on my pelvic floor muscles hurt so much. I am running out of options as well. I take so many medications and the only benefit I get is from the InterStim which does not help with pain. As for feeling any better, some days are better than others. I never feel like myself anymore.

[jleblanc]

Hi..

Well, I have to say no, I am not really any better. My frequency is WAY up, especially in the last week or so. Like 40 times a day. I am also getting up at least 3 times at night and not sleeping well. I still have to force myself to "go" most of the time. Pain is also up as well. I have heard this is not usual.
Honestly, I am not sure how much Botox was used. It was all injected into my bladder. I kind of feel like I am caught in a never ending spiral that I don't know how to get out of.....Not sure what options I have left, but I have to keep a positive outlook! My doctor wants me to try physical therapy, which I have not started yet.....hope that is going to help and that my increase in symptoms is temporary...I must say I have been sort of depressed the past few days, which is unlike me. Like I told my husband yesterday, I would just like one day where I have a normal bladder! :)

[mpowner79]

I wish the same thing. May I ask how long you had IC and if you work. My IC is getting in the way of my life. May I recommend asking your doctor about getting an InterStim. I really helps with frequency. I still go allot but it isn't as often as before the InterStim. I did not know that having allot of pain is unusual. Pain is my main issue. It hurts sometimes to walk or even sit down. I also have other illnesses but this one is the worse. I cry allot and its hard raising 3 kids alone with IC. God bless you. It is nice to finally talk to someone who understands me. No one arounds me seems to see how painful this thing is.

[jleblanc]

Hi again..
I was diagnosed about 7 years ago. I do work part time during the school year at a medical school. Luckily, my work days are only about 4 hours when I do work, and it is a pretty casual environment where I can take many breaks.
Unfortunately, there can be quite a bit of pain involved with IC, and mine can get especially bad with my periods. I recently went on continuous birth control pills, so we will see if that helps. So far, I am not happy with them. I am also on many other medications, including prescription pain meds as needed.
I am getting ready to start a series of DMSO treatments again, and I am hoping this helps me, since not much else is. My frequency at this time is in the 40 times per day range, and 3 or so times at night....I have considered the Interstim, but I want to exhaust all other treatments first. I am also considering a hydrodistention and urethral dilation....I will probably go ahead with that sometime soon. I have heard people have success with that.....
I wish the Botox had helped me as I had heard so many promising reports...It was not to be:)

[mpowner79]

Wow, 7 years it a long time. Do you think you know how you got it? I think mine was due to the birth of my daughter. That was about 4 years ago. She was my third child, but I never felt the same after I had her. OMG, my pain gets unbearable with my periods. I thought I was going crazy for a second. It starts getting bad about a week when my period is due and so bad when I have my period.
Is DMSO the same as bladder instillations? If so, I get them weekly along with the Botox injections. I am not so sure if they help me especially if I am having a very bad flare. I am going to get one tomorrow. I had hydrodistention twice and it only relieved my pains for about 3 or 4 months. Does it hurt when you sit down? I have VV as well as gastroperisis. I have never heard of urethral dilation. What exactly is that and how will help with pain?
InterStim is good, but it can be annoying sometimes. Its like someone is constantly poking you all day long. Sometime you might not notice them but other times you do. Plus it leaves an ugly big scar on your buttocks:(