Botox - first time

[T.JoP.]

There doesn’t seem to be a great deal of updated info about Botox for the bladder. I thought I would share my experience so far and spark some conversations and hopefully get more input.

I got my first injections on Monday 3-18-19. The procedure was done in office. My urethra was numbed and lidocaine was instilled about 15 minutes prior to procedure. There were approximately 10 injections. I barely felt the first two; however, the injections after that were quite painful.

These were done by my NP as I see her almost always now instead of DR. Both are great, but I think many of us with IC feel like we are sometimes brushed off or not listened to as well as we expect.

I do feel the procedure was minimized by my NP. It was more painful than I expected. I also began to pass nickel sized clots after the fact. I knew there would be blood but I was surprised at the amount. Peeing hurt for many hours after procedure. Bloody urine and pelvic pain lasted about 18 hours. I drank lots of water as normal but I was supposed to drink more. Everyone of course is different. The NP said no one had ever had clots like I did.

By day three, I felt an infection coming on. I know the drill, get culture and wait. I was in so much pain, I found old antibiotics and took them to hopefully begin to get relief. I also had to take my tramadol for pain.

By by the middle of the night, my urine was only a trickle. By this morning, day 4, I had to self cath. I feel full but I don’t have the sensation of oh I have to pee. I’ve called the Dr and the nurse said it’s all normal.

It’s very frustrating. This is the only treatment I had not tried. I’ve tried all the medications and nothing helped or I couldn’t tolerate side effects. I do take Elmiron. My IC has progressed over the years and I really want this to work. I’ve tried all treatments as in guidelines by AUA (1-4 line treatments).

It it could always be worse, but I’m praying for full recovery.

I am am thankful for this forum. I have found way more helpful info here than any dr has ever given me. Thanks to IC network!

[erinw1405]

I had bladder Botox done last summer and did get retention from it. It gets better I think around 3 months is when the retention started to go away. Once I got used to cathing I preferred it better than the frequent urination.

[T.JoP.]

Thanks for the reply. I’m feeling lots of pressure and something similar to a bloated feeling in pelvic area. Do you recall the same? Also, did Botox help with ic pain?

[dianabritt]

I'm getting botox injections April12
My Dr don't do the procedure in his office. It will be done in the hospital and I'll fully asleep. I'm terrified about the pain afterwards.
.

[T.JoP.]

There was way more pain than I expected but it wasn’t the same pain as in the middle of a severe ic flare.


I hope you you do well with your procedure. Everyone is so different. It may be a breeze for you!

Please let us know how it goes.

[wizbe]

Hello there!

I have had botox 7 times, I am scheduled for my 8th on Tuesday. I am always put to sleep for mine as my doctor feels with my pain level it is the best option.

Your bladder will feel like a bit of a tug of war for a couple of weeks as the botox begins to take effect. It does feel very interesting and funny at first but I can assure you that it gets better.

I have had different experiences with each botox treatment. Some have worked extremely well while others have not. For the most part I have had good experiences. I have had one not work at all and one that worked minimally. The other 5 have worked like a charm.

I have passed clots as well over the first few days. I have developed infections from the procedure a couple of times. However, for the relief I get from the procedure, those are minor hiccups.

I have had retention (not complete retention) where I haven't been able to empty my bladder completely. For 5 of 7 botox treatments I have cathed 4 times a day for about 2.5 months. I would rather do that than be in the washroom 50 to 60 times a day.

I do have a decrease of pain from the botox. I lose that awful pee sensation (usually) and the pain that is directly in my bladder goes down. I do still have urethra pain and navel pain daily. However, with botox I can function and work, without botox I cannot work. It's a nightmare.

I am thankful for botox. I hope it works for you :-)

[T.JoP.]

I’m glad you’ve had some success. Thank you for the reply and encouragement.

[T.JoP.]

Just an update from my botox. I am nine months out and still have retention. I battled numerous infections the first few months. I have been on a low dose of antibiotics for six months now. No more infection. Ready for botox to wear off. I'm glad others have had success with it.

[ICNDonna]

Just an update from my botox. I am nine months out and still have retention. I battled numerous infections the first few months. I have been on a low dose of antibiotics for six months now. No more infection. Ready for botox to wear off. I'm glad others have had success with it.

That's awful. Are you needing to catheterize to urinate?


Donna

[T.JoP.]

Yes, I have been self cathing since March. Not happy with it. 🙁

[ICNDonna]

That has to be challenging for you. Are there any alternative treatments being suggested to help? If not, you might want to seek a second opinion.

Donna

[T.JoP.]

My regular urologist’s NP ordered a Urodynamics test and an ultrasound to check for obstruction etc. Everything was normal. I have the interstim implant as well. It is on the lowest setting. The doctor suggested it was not allowing me to empty. Obviously, that’s not the case. (It has been a help over the years, but not that much of a help that it would cause the retention.) I did seek a second opinion after the NP was concerned about an obstruction and that I still had retention. She was adamant that the pkg insert and research says it only lasts six months at most. I have read otherwise from things I’ve found online. The specialist in Nashville said it typically doesn’t last past 6 months but everyone is different and that she wasn’t concerned about it at this nine month point. No I haven’t had an ic flare since getting Botox but I’ve had numerous infections and had to reduce amount of water I drink-which is all I drink. I’ve gone through each of the recommended treatments as outlined from the UA except the cyclosporine. Botox for me has had fewer benefits than rewards. Praying for the Botox to wear off sooner than later! 🙏🏼

[ICNDonna]

I hope it wears off soon. I understand how frustrating this must be for you.

Sending gentle hugs,
Donna

[watermelon]

Hi, T.Jop.,

i had the bladder Botox done under anesthesia on Dec. 23rd, 2019. didn’t notice much retention until the 3rd day, like you. i could only pass a trickle and occasionally i can pass a surge of urine but am double, triple, quadruple, etc. voiding at times, and having difficulty urinating despite feeling full. i went to the ER of the hospital that did my procedure and of course my symptoms magically disappeared (of course, lol) for the two hours i was there & they said that my bladder was only retaining 40cc’s of urine. they said there was nothing they could do until i’m seen for my follow up on the 8th.

i’m terrified of catheterization because the majority of pain i had from the procedure was due to the catheter. i also passed blood clots and was screaming during the first two days every time i went to pee. i imagine i will have a similar experience as you in terms of perhaps needing to self-cath or experiencing retention for a long period of time. does the tramadol help? i used to take it but New York State is very strict about prescribing painkillers and they told me to just take Advil - which does not work at all for me. :c

[ICNDonna]

Hi, T.Jop.,

i had the bladder Botox done under anesthesia on Dec. 23rd, 2019. didn’t notice much retention until the 3rd day, like you. i could only pass a trickle and occasionally i can pass a surge of urine but am double, triple, quadruple, etc. voiding at times, and having difficulty urinating despite feeling full. i went to the ER of the hospital that did my procedure and of course my symptoms magically disappeared (of course, lol) for the two hours i was there & they said that my bladder was only retaining 40cc’s of urine. they said there was nothing they could do until i’m seen for my follow up on the 8th.

i’m terrified of catheterization because the majority of pain i had from the procedure was due to the catheter. i also passed blood clots and was screaming during the first two days every time i went to pee. i imagine i will have a similar experience as you in terms of perhaps needing to self-cath or experiencing retention for a long period of time. does the tramadol help? i used to take it but New York State is very strict about prescribing painkillers and they told me to just take Advil - which does not work at all for me. :c

Advil is a problem for many of us --- along with other NSAIDS. Sometimes Tylenol helps.


Donna