Botox Instillation

[Trinka]

Hello all. I had the botox instillation done tuesday and I thought I would give you a report on what happened and my symptoms.

The surgery went well. I was under anesthesia for only 30 minutes. The doctor injected the botox in 25 different places in my bladder. He also put some marcane in afterwards to numb me up.

When I woke up it burned in the urethra. I don't know if it was because of the scope or if it was the medicine coming back out that did it but I had an ice pack between my legs the rest of the day.

Day 2 I woke up to horrible bladder spasms and pain. Worse than I was having before the botox. My bladder was retaliating. As the day went on it got better.

Today(Day 3) isn't too bad so far. I think it is starting to work. I didn't have the extreme pain and bladder spasms this morning and I even slept 4 hours without having to urinate. Normally I would of been double over with pain if I wouldn't of went for 4 hours but this morining is was minimal.

I will try to keep everyone updated on my progress so if you decide this is the route for you to take maybe you will have an idea of what will happen.

Trinka

[liz2]

Did your doctor do a hydro to enable him/her to better place the Botox injections? Or were the injections done without a hydro at the same time? I gather yours was an in-hosptial procedure. Am I correct?

Day 2 and day 3 after hydros are always my worst days, and are for most people who have surgery of any kind.

[Trinka]

My doctor did the cysto and not a hydro. At least I don't think he did. I am not for sure.

I went to the outpatient surgery center at the hospital and that is where they did it. They said it would be to painful to do without anesthesia. So I said go ahead and knock me out.

[Flore]

Hi Trinka

I think you did have a hydro, because when dr put the cystoscope inside your bladder he/she has to stretch it for see where is he/she going to put the injections

And I am agree with Liz, the symptoms that you had are very common after the cysto/hydro

Continue telling us your progress

[auntiedeb]

grouphug grouphug Trinka, I pray and hope that you are feeling better each day and let us know how you are progressing. I haven't had the botox done but wanted to support others that have had it. Here are some gentle hugs and healing thoughts and angels for you. grouphug grouphug grouphug angel angel angel

[CinSin]

Trinka,

Good luck - I hope Botox brings you great relief. I have had it done twice now and it literally gave me my life back. Cindy

[Trinka]

You all are probably right about the hydro. It makes alot more sense. I have been in such extreme pain for so long that when I woke up from the surgery yesterday and I didn't have any bladder pain I was so happy. The marcane lasted almost 20 hours. I think that I just need some type of machine that pumps marcane directly into my bladder once a day and I would be good to go.

Thanks for all the encouraging words. I will keep you all posted.

Trinka

[Dianne]

I'm day 15 post-botox. No change in pain level for me unfortunately. I had a good night the night of surgery and also one good night the next week. I had a couple of 3-4 hour blocks usually in the afternoons that were good about day 10-11 and no good episodes in 2-3 days now. I had a lot of retention around day 10. I still can't pee til I have about 100cc in there but I have pain at 30cc. I can't tolerate cathing well due to my urethra is a mess so I've learned to express out the residual by pressing on my bladder and that's solved that problem. I so hope I'll still get some pain relief. Wish you the best and hope you're one of the lucky ones.

[Trinka]

Diane sorry to hear that it isn't working for you. Hopefully you will be able to find something soon that will work.

This is day 5 for me and there hasn't been much change. I did sleep for 8 hours last night and when I got up this morning the bladder spasms started and never stopped. I guess that is what I get for having a normal nights sleep.

I truly am beginning to wonder if this is going to work for me or not. I guess I will know more as the days progress. I think it has helped a littled bit but not enough to brag about.

I will keep everyone posted on how things go.

Trinka

[Dianne]

Day 5 is still early so hang in there. And 8 hours sleep certainly isn't something to pass up. I think the spasms will settle down. I had another horrible night-day 16 now so I don't think it's looking good for me. I don't have residual this a.m.-first time but pain is unchanged.

[Trinka]

I really was hoping that it would work for you Diane. I know what it is like to go through the pain day in and day out. Sometimes the nights seem like that last 24 hours instead of 12.

This is day 6 for me. I slept about 6 hours but had the same results as yesterday after urinating. Now the spasms have lasted all day again. I hope that this botox kicks in soon. It would be nice to be pain free again.

Diane have you tried the nerve blocks? That is my next step if this doesn't work. I have had them in the past and they worked so I do have a back up plan.

I will keep you all updated as much as I can.

Trinka
grouphug

[louise]

Hi,

I just wanted to add my two cents even though I haven't had the botox injections.

But about a month ago while I was having Cystistat instillations as some of you may have read the nurse who did the instillation had not worked in ten months and as Dianne said it is not an easy procedure and obviously one which this particular nurse needed some upgrading on. I know myself it is not a "walk in the park" as I have done instillations on myself and found it is not always that easy to find that little sucker.
But when this nurse did the three catheterizations on me, she was poking around down there like I was a piece of meat as well as being a big lady she was leaning on me and bending my legs so she could see what she was doing better. The last straw was when she had the catheter in the vagina and thought she had it in the urethra and proceeded to press very heavily on my bladder to try and squeeze some urine out into the basin. I told her the other nurses always wait to see the urine before they proceed with the instillation but because I couldn't see what she was doing obviously she went ahead the third time and instilled the solution into the vagina. The solution was leaking out all over the bed sheet and my gown - all $175 of it!

Finally I had had enough and asked her to have the charge nurse come in and do the instillation. She managed to do the treatment with no problems. At a cost of another $175. But by this time the first nurse had done a lot of damage to my urethra, bladder, right hip (I was suffering from acute bursitis in both my hips at the time) and low back. Even my PT who gives me acupuncture has told me his treatments won't help me until all this irritation settles down from the trauma of the disastrous instillation.

This has been going on for short of one month and is not showing any signs of relenting. I have now submitted three urine samples: the first showed blood due to the inflammation caused by the irritation of the procedure and "organisms" but no C & S was done. The second report showed a low-grade infection and "gram positive organisms" but no C & S. The third one still showed low-grade infection, mixed organisms, protein, high PH and mucous. The reports just keep getting worse. And due to a recent history with C.Difficile my doctors will not at this point put me on an antibiotic to treat the infection so my pain level has been considerably higher this past month.

My doctor is now awaiting a C & S report from the third specimen next week. Plus I am going to encourage him to speak with my Infectious Diseases doctor to get his opinion about all this.

I feel sorry for all you ladies that have had the Botox injections and are having problems. I just wanted to illustrate how much pain and suffering one instillation gone awry can cause. So I have decided for now not to have any further invasive procedures done on my body. I just need to rest and let my urethra and bladder settle down from this trauma caused by one negligent and inexperienced (at least as far as IC is concerned) nurse.

Good luck to all you Botox "adventurers". I really do wish you all the best and hope improvement will be around the next corner.

Sincerely,

Louise

bunny bunny bunny bunny

I am a "bunny" fanatic so I and my furry friends hope you are doing much much better.

[Flore]

I was thinking in the problems that many of you have with retention after the injections
And I didn´t have it, I don´t know if is because my dr allways leave me a catheter for a few days (aprox 4) after the procedure, and my bladder take a rest for a while

I´m agree with Louise, all the procedures that we have to have are very painful(cysto, hydro, intillations, catheterism, etc..), and many times our body needs AN IC VACATIONS!!!!

[Shelleynz]

Hi everyone,
I came across this Botox article on a news site today:-

http://xtramsn.co.nz/health/0,,8286-2621781,00.html

I thought you might be interested.
Regards
Shelley

[Flore]

Trinka

How are you???

I am interesting to know how are you doing with Botox

I was reading one of your posts, and you said that you slept 8 hours, and I thought "woow, I can´t imagine sleep for 8 hours without go to the bath"

And....last night I was very tired, so the last time I went to the bath was at 10:30 pm and I slept like a baby (I didn´t go to the bathroom), so today I woke up at 8:30 am with a very big flare

Ouch!!!! everytime I did urinate the pain killed me, I have alot of frequency and pressure in my bladder

MORAL: With Botox or without it WE NEVER LEAVE OUR URINE IN THE BLADDER FOR A LONG TIME!!!!!