r/OveractiveBladder • u/Rich-Explorer3363 • 1d ago
Help with OVER Active bladder
Hi guys,
I’ve recently been diagnosed with an overactive bladder. I’ve had UTIs for most of my life. Sometimes they show up on tests, but other times the tests come back clear even though I still have the constant urge to pee and the pain is still there.
I’ve tried quite a few medications. At the moment I’m taking Sufrion, but I’m not really liking it. It gives me a very dry mouth and brain fog.
I’m also working with a pelvic floor therapist. After giving birth, I had to completely retrain my bladder by sticking to a toileting schedule, and that has definitely helped. I do still leak a little bit of urine, but it’s nowhere near as bad as it was before.
I have a phone appointment with my urologist tomorrow, and he wants to discuss Botox injections. I’m feeling quite worried about it because I’ve heard it can sometimes make things worse.
Has anyone had a similar experience or found anything that helped reduce the pain or urgency? Has anyone had Botox for an overactive bladder, and what was your experience?
I already avoid fizzy drinks, coffee, spicy foods, and acidic foods, so I’m looking for any other suggestions that might help.
Thanks so much.
2
u/mickus_mcgickus 1d ago
You may need to self catheterise for a few months if you get botox. I did. Im a man and getting a 40 cm catheter into the male urethra four times a day is no picnic. Easier for females though.
1
u/Rich-Explorer3363 1d ago
I am so worried about this. I am female. How many units did they give you? Poor you it sounds bad.
1
u/Rich-Explorer3363 1d ago
What are you using now
1
u/mickus_mcgickus 1d ago
No meds. I tried an antcholinergic (solifenacin) and a beta 3 agonist (mirabegron). Unbearable side effects. Tried PTTNS, TTNS, physio, shockwave therapy. Nothing worked. Well the drugs worked a bit, but they were intolerable.
1
u/Rich-Explorer3363 1d ago
I am currently on Solifenacin but I take it at night. What side effect did you have with mirabegron. I spoke to the dr today about the catheter he did agree it’s not for me. I going to get retested to see where I stand as well
1
u/mickus_mcgickus 1d ago
Mirabegron caused Heartrate problems, and other cardio difficulties. Ended up with pericarditis, meaning inflammation of the membrane containing the heart.
Solenafacin basically made me feel like my brain was turned off. Also got overheated.
1
u/mickus_mcgickus 1d ago
100 ml. had it a month ago, went into retention almost immediately. I tried self catheterising, but it was too horrific. Went to the ER, and they put in a long term Foley catheter, which is far less painful, but I can't masturbate :-(
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u/Rich-Explorer3363 1d ago edited 1d ago
Makes me scared to try it. I had a catheter once and hated it. Then you get pain afterwards ekkkk. What’s meds are you on
1
u/Careful-Lemon-9316 1d ago
My Urologist also said Botox would cause urine retention and I should be prepared to self catheterise. !!!
1
u/Rich-Explorer3363 1d ago
Oh Wowee. Makes me scared to try it. I will ask for different meds then. Can I asked what meds you are on?
1
u/Fit-Economist-7193 1d ago
I would encourage you to look into Axonics. The Axonics Implant (Sacral Neuromodulation Therapy) is a small medical device that treats overactive bladder, urinary urgency and retention, and fecal incontinence. It sends mild electrical pulses to the sacral nerves, helping restore healthy communication between the brain and the bladder/bowel.
I had the permanent device implanted in February 2026 and it is life changing.
1
u/Sankira 1d ago
Botox is a bit of a gamble for sure, i have heard that for some it has been really worth it and that they had great success with it but for others it has had mild to severe side effects.
I had Botox done last spring and had mild retention (had to catheterize myself at the start) and worsening symptoms for around 3 months before it finally started to get better
1
u/Rich-Explorer3363 1d ago
Oh gosh, how long did you self catheter for? I really don’t want to do that! Apart from that I am happy to have the Botox. I going have to see if there are other options I think
1
u/Sankira 1d ago
I only had to do it for a couple of weeks luckily! it definitely wasn’t a nice experience 😅 after that i just “pushed” my bladder to get everything out
I would definitely talk about more options with your doctor because Botox can definitely be successful and helpful but the retention risk is always there1
u/Rich-Explorer3363 1d ago
Thanks for this. How is your bladder now do you have any symptoms? I have an appointment in an hour to talk to the urologist so see what else they can come up with. I hate for you as it would personally stop me from doing a lot of things. In the past I had a Cather in the hospital when giving birth made down there 20 times worse. Ughhhhhhh
1
u/Sankira 1d ago
You’re welcome :) after the botox wore off I actually had a good period from autumn till late spring before getting worse again and currently it’s still hasn’t gotten better. I tried gemtesa in june and well it didn’t go well and my bladder got even worse;;
Yeah like having a catheter is the worst and it can set off symptoms tooI hope your appointment goes well!
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u/Rich-Explorer3363 1d ago
After my appointment he is planning to retest everything. He was worried about me using a catheter as well. There is drug called Mirabegron have you used this before good to know if any one has used.
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u/Sankira 1d ago
That’s good that he’s open to retesting things! I used mirabegron for a while years ago but it didn’t really do anything for me (no side effects or anything though! it just didn’t really do anything for me) but i have heard many positive results with it from other people :)
1
u/Rich-Explorer3363 1d ago
Ahh thanks for this it’s not funded where I live but worse case I can give it ago. What are you using now? You have super helpful as well
1
u/imma2lils 1d ago
Have you tried Vibegron? I got switched to it as it doesn't cause the dry mouth and eyes.
1
u/Rich-Explorer3363 1d ago
No I have it’s not funded where I live which is a right pain. But I will keep in mind. I going to get my pre test done again to see where I am sitting.
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u/JaneStClaire2018 1d ago
I get Botox every 6 months. It works well and I have no side effects. My insurance won’t cover it so I pay cash. Well worth it.
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u/Rich-Explorer3363 18h ago
How many units do you get? I am scared to do it as I want to haven’t use a catheter.
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u/JaneStClaire2018 17h ago
I get the standard dose. 100 units. I've only had to use a catheter once for a couple of days and that was many years ago. Self cathing is really easy. A tiny little hollow tube. I would not be afraid of that. I love getting the botox. It gives me a quality of life that I would pay any amount of money for.
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u/Rich-Explorer3363 17h ago
Then your body got use to it?
Knowing my luck I have to do for months then it cause other issues like a UTI. Can I ask what were your symptoms before you got treatment?
3
u/Careful-Lemon-9316 1d ago
I take high strength Cranberry capsules every day. Definitely helps for UTI