Anyone tried Bladder Botox? Running out of options

Includes bladder pain syndrome
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thezach
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Anyone tried Bladder Botox? Running out of options

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Basically I only have the symptoms of urgency and frequency, urge comes back around 10min of last urinating. Tried medications for overactive bladder and PT but nothing works. Urologist is suggesting Botox as a last resort but she doesn't think it will work from her previous experience. I'm reluctant to schedule it too. Has anyone tried it?

I have a cystoscopy appointment in 2 weeks that I pushed for. My urologist thinks it's probably going to be normal and so do I, but there's nothing else I can do and if I don't do these, I'm just stuck in a limbo.

Recently tested positive for Hpylori due to stomach cramps and frequent bowel movements. Took antibiotics and cleared it but the pain and bowel movements remain. Was hoping that at least one issue can be resolved. Not sure what are the next steps on that end too.

Everyone seems to improve from PT or time or just something but I have tried everything and nothing seems to work?
Age: 20s | Onset Age: | Symptoms: Constant urge to urinate, urge returns within minutes of last peeing. Sometimes pressing the perineum after peeing feels like urine is still there. No pain. Initially have bladder soreness and occasionally urethra feels hot after peeing, these have since gone away. Some on and off stomach pain too. | Helped By: | Worsened By: | Other comments:
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webslave
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Re: Anyone tried Bladder Botox? Running out of options

Post by webslave »

Are you following the IC Diet: https://ucpps.men/viewtopic.php?f=4&t=8733

Have you looked into food allergies? Have you tried eliminating gluten?
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thezach
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Re: Anyone tried Bladder Botox? Running out of options

Post by thezach »

Have not tried the IC diet. I didn't notice alcohol or spicy foods affecting my urinary issues. I have cut out alcohol other than on special ocassions, but it doesn't seem to affect me. Spicy foods do affect my stomach sometimes, so I try to reduce it.

Have not tried eliminating gluten, not sure what foods contain them. I could give it a shot.

I did consider IC but I have no pain other than the initial periods where my bladder was sore which I had no explanation for. My urologist gave me Ural to try since there was nothing much left. Ural is an alkaline solution to help reduce the acidity in the bladder, but it didn't seem to make a difference. Also gave me Anarex to relax the muscles but I took 2 days of that and didn't change anything too.

Just quite demoralised at the moment since I just had an appointment recently and it's basically just repeating the same things again. I stopped PT too since she said that it might not be helping as I'm not responding even after months.

Edit: Have not looked into food allergies too. Although I'm having hives quite frequently in recent months, not sure why. But the hives developed long after my urinary issue started.
Age: 20s | Onset Age: | Symptoms: Constant urge to urinate, urge returns within minutes of last peeing. Sometimes pressing the perineum after peeing feels like urine is still there. No pain. Initially have bladder soreness and occasionally urethra feels hot after peeing, these have since gone away. Some on and off stomach pain too. | Helped By: | Worsened By: | Other comments:
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Re: Anyone tried Bladder Botox? Running out of options

Post by webslave »

If you have hives and foods affect your stomach, you probably have an atopic disposition and an elimination diet could help you. But start with gluten removal, for at least a month, then re-introduce and look for any type of symptom. Make sure you know where gluten is found (it's all over the place!)
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thezach
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Re: Anyone tried Bladder Botox? Running out of options

Post by thezach »

Seems like gluten is all over the place and would need some research to cut it.

Are there any other links between the gut issues and the bladder? Doctors say that IBS is related to the bladder but there doesn't seem like there's anything they can do about it. And I haven't been diagnosed with IBS yet, although it might ultimately be IBS. Are there any other possible links? I do have some tenesmus too.
Age: 20s | Onset Age: | Symptoms: Constant urge to urinate, urge returns within minutes of last peeing. Sometimes pressing the perineum after peeing feels like urine is still there. No pain. Initially have bladder soreness and occasionally urethra feels hot after peeing, these have since gone away. Some on and off stomach pain too. | Helped By: | Worsened By: | Other comments:
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Re: Anyone tried Bladder Botox? Running out of options

Post by webslave »

IBS (and fibromyalgia) are comorbid with UCPPS, so they all tend to occur in this patient population more commonly than in the average person.
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