RE: Botox for Bladder: Has anyone that... - Pelvic Pain Suppo...

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RE: Botox for Bladder

Acort89 profile image
15 Replies

Has anyone that has been diagnosed with OAB have had the Botox in bladder procedure done? Is it effective ? I’ve currently have been diagnosed with OAB, medication didn’t work, ptns treatment have been a hit and miss (currently doing them).. has anyone that has had this done seen any improvements? All feed back is welcomed.. thank you God Bless 😊

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Acort89 profile image
Acort89
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15 Replies
Alloagirl profile image
Alloagirl

Hi Acort, I have OAB. Currently on Solifenacin. It has worked for me until the last two weeks. On the 5mg but reluctant to up the dose to 10mg as it has caused constipation. I also have been offered Botox but it can cause water retention and a catheter may be needed. I did not fancy that. Not sure what a ptns is, I am in the UK. I am on the waiting list for acupuncture with a slight electrical to the nerve that rules the bladder. I am also interested in hearing others who have had the Botox and their experiences. Hope you find something that works for you.

Acort89 profile image
Acort89 in reply to Alloagirl

Alloagirl thank you soo much for your reply.. how has it been since you’ve had oab? I’ve tried many medications including Solifenacin 5 mg and the 10 mg and it didn’t work for me.. I’m on PTNS right now.. its a procedure where a acupuncture like fine needle is placed on your sacral nerve located on your ankle is placed and then stimulates the bladder nerve by sending stimulation to stimulate the bladder nerve.. this a 30 minute procedure. It is done for 12 rounds once a week back to back for the first 3 months.. then after that it is done once a a month.. ( you do not start to see improvements until by the next 6-7 session..

it worked for me by the 7 session I felt it worked by bladder was under control and that the urge was gone, but now that I’m doing it once a month my symptoms came back.. I hope you get to try and see if it works for you :)

Alloagirl profile image
Alloagirl in reply to Acort89

Hi Acort, Yes that is what I am on a waiting list forPTNS. Did not know what you meant as we don’t use that phrase here in UK. I am using a similar thing myself . It is a tens machine which basically does the same thing. You just use pads where tibial/sacral nerve is and sends the stimulation to the bladder. My physio showed me but still not had any luck with it. Since the OAB started, things have not been good. Yes Solifenacin worked but caused me constipation. I feel I need to increase the dose to 10mg but cannot have anything that will make constipation worse. Luckily I have dry OAB, meaning I do not need to pass urine, it is just a terrible pressure on the urethra as if I do. I also suffer anxiety which goes part way in causing this horrible thing. Botox is not for me.

Skye22 profile image
Skye22

Have oab for quite a number of years. Tried bladder injections painful beyond belief and unfortunately did not work.I am now taking solifenacin 10mg and it is very effective. Can now manage urgency and leakage much better now. Hope you find something that works for you. I would recommend trying medication rather than having an invasive procedure.

Onslow729 profile image
Onslow729 in reply to Skye22

How long have you taken the medication ?

I’m interested if you have had any side affects ?

Because as you can see where I wrote on here I have.

I can’t prove it’s the meds but I’m interested to see how others feel using this drug.

Skye22 profile image
Skye22 in reply to Onslow729

Have been taking solifenacin about 4yrs now no side effects it really did change my life, no more fretting about where the nearest toilet is when I go out. Physical therapy helped a lot too.

Acort89 profile image
Acort89 in reply to Skye22

Skye22 thank you for your feedback.. yea I have heard it can be painful that’s why I’m iffy about it. I’ve tried many medications pretty much all of them for oab bladder and unfortunately for me they did not work. Did you also have trouble emptying your bladder ?

Onslow729 profile image
Onslow729 in reply to Acort89

Yes I haven’t been able to fully empty my bladder for many years, hence the number of trips to the loo daytime and nighttime.

Getting up 7/8 times a night is really tiring especially as I have sleep apnoea for which I have to use an CPAP MACHINE. AND MASK.

a couple of months ago I finally got a Prostrate operation.

This was an “Urolift” where they put staples into the prostrate to try and move it away from the urethra.

The consultant said to continue with the Tamsulosin until you feel able to stop it.

Start the solifenacin at 5 mg at night.

First 2 weeks seemed ok and allowing me to sleep better because I was not getting up as much.

So from 6-8 times a night to go to the loo down to 3-4 times a night.

But after 3 weeks I started to feel really ill. Hot sweaty and clammy especially my head and shoulders.

Then fatigue set in with breathing difficulties.

So poor respiratory system constantly meaning I was struggling to breathe.

So worried it might be the tablets I stopped taking them.

Initially i improved for a week or so and now I’m back struggling with these effects.

Plus I’m nightly going 6-8 times and day time about the same.

I’m no longer emptying my bladder and spend ages in the bathroom trying to make it actually start to pee and continue.

I come away with urine still in my bladder and I’ll be back again soon.

I want to know if others have had these side affects and how they stopped them.

Any advice is appreciated. xx

Onslow729 profile image
Onslow729

I’m sorry I can’t help here but I’m interested to hear what others are saying. It’s not something I’ve heard as a treatment for OAB but I’ve suffered the same problems for most of my adult life. Certainly since my 30’s and I’m now 71.

You will see my history on here as well as my comments.

I’m assuming you have tried several medications like Tamsulosin ? Etc

Keep us updated please 🙏

Acort89 profile image
Acort89 in reply to Onslow729

Onslow729 thank you for replying. How have you been able to manage your oab? Do you have bad uegency etc? Thank you if anything works for me I’ll let you know.. 🙏

endoTHENmesh profile image
endoTHENmesh

I have had botox injections in my pelvic floor muscles. The effect was numbing and muscle spasm stopping. That said, the duration is limited to 3 to 6 months. It seems the duration grows w repetition.

I do know a woman who has had the procedure (OA botox) done 14 times over 7 years. She works in healthcare so it is affordable due to her place of employment.

I have read of efforts in either the EU or England... to address the problem rather than simply numb and stop the bladder muscules from twitching. The procedure involves instilling liquid "hyaluronic acid" into the bladder for 30 minutes. (HA is so mild an acid that many of us use it on our face.) The thought is it helps the bladder repair the lining of the bladder, and address the root cause - ie you may not need this repeated but a couple of times.

My thought would be to do the botox at least once to see if it helps you; and to keep an eye on the HA studies (ask your doc to do so as well) - in hopes of finding a more permanent solution?

BTW My doc used 1/2 the recommended dose on my first round of botox - since once it is done... there is no way to reverse it. You simply have to live with any side effects until the body repairs the nerve endings that the botox nuked.

Just saying... Let us all know how it goes? BEST OF LUCK !

PS Yes - the injections are very painful. PLEASE insist on having them done under propofal!!! They use that for colonoscopies; not full general anethesia, and 5 minute recover with oxygen. That said - no driving for a day.

Acort89 profile image
Acort89 in reply to endoTHENmesh

endoTHENmesh thank you so much for replying.I’ve done pretty much all the medications for oab that you can think of and they didn’t work.. I’ve heard that the injections can be painful and then a catheter maybe needed so I am iffy about it.. that’s what I am going to ask my urologist about that study because I’m hoping it can help me.. I was doing the PTNS treatment and it seemed to help, but I am interested in the study..

are u feeling any relief from your symptoms ? Did your oab get better ?

endoTHENmesh profile image
endoTHENmesh in reply to Acort89

Hi! Glad my story was helpful.

My botox experience was good. That said I did experience some side effects with pelvic floor weakness that passed after about 3 weeks.

I was able to learn to manage the cause of my spasms with myofascial manipulation. I have had 10 pelvic surgeries over my lifetime (endometriosis and a hernia from the surgeries.).. In a nut shell, I have extensive scarring and adhesions that pull my organs out of position (bladder, intestines mostly), so I have to do myofascial stretching on a regular basis (every other day). My therapist taught me some self maintenance so I see her twice a month.

I would hope that you find some temporary relief with botox, but that said - it is only temporary. You need to try to figure out when and what precipitated the OAB and try to find a way to improve the root cause.

Of course, that is not always possible. But if I were you - I would try botox and see if that provides any insight. As the pain went away (goes away incrementally), the last place is likely the source?

As far as pain after the injections (ie first several days)... yes I was sore and had some pain, but given that I had pain before the injections - not too bad. And I knew that the botox would start numbing the area... took me 14 days to get the full effect.

Post how you do 👍Again best of luck!

Lynkeogh profile image
Lynkeogh

Fantastic wonderful amazing for me has worked so well. It’s great to decide when I will go to the loo and not be sidelined and wee all over the floor

Red1974 profile image
Red1974

I have been using Botox for my bladder since 2003. Give me a call anytime 304-280-0010

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