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Has anyone had Botox or sacral neuromodulation? I need advice please.

A MyMSTeam Member asked a question 💭
Markham, ON

Sorry, this long.

I have constant bladder pain, frequency, urgency, and recurrent UTI’s. I had C. difficile twice from repeated antibiotic use in 2019. My symptoms have been constant since 2012 and are getting worse. Nothing helps.

I’ve seen five urologists (3 of them were uro-gynecologists) since 2023. I’ve seen others in the past. I was diagnosed with MS in 2021. In this latest round, no one can decide if my symptoms are from interstitial cystitis, a diagnosis I received in my 20’s and four… read more

October 4
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A MyMSTeam Member

@A MyMSTeam Member sorry your dealing with so many issues, I would take any information I have and find a new urologist and you might even get an appointment with a Nephrologist. They look at a lot more than a urologist.

October 6
A MyMSTeam Member

ZOOMA, I would do this if possible. Compile every Record from this condition that you may feel is relevant. There are online services and platforms that will allow you to download all of those notes as well give your detailed explanation. At which point they're probably going to tell you to go give a urine. They will compile all of the info and treat you accordingly. Insurance likes these platforms because they cost them less. I find through attrition that I can get a communal answer. Good luck and stay tough. It seems I have some urinary issues in terms of contracting UTI's. This came quite dangerous because it can lead to sepsis.

October 5
A MyMSTeam Member

@A MyMSTeam Member, I’m sorry you are going through all this and I wish you the best. I’m sorry but I haven’t dealt with this before. Saying prayers you get relief soon.

October 4
MyMSTeam

First, what you've been through sounds genuinely exhausting and frustrating — being passed around, misrepresented in notes, and still left without relief after years of symptoms is not okay. Your feelings about this are completely valid.

To answer your question about Botox: yes, many MyMSTeam members have had positive Show Full Answer

First, what you've been through sounds genuinely exhausting and frustrating — being passed around, misrepresented in notes, and still left without relief after years of symptoms is not okay. Your feelings about this are completely valid.

To answer your question about Botox: yes, many MyMSTeam members have had positive experiences with bladder Botox. One MyMSTeam member shared, "A few years ago, I started getting my bladder Botoxed, and it really changed my life." Another said, "Botox has been a life changer for me — no more leaks or wet seats." Here's how bladder Botox generally works:

- It's injected into the bladder wall during a cystoscopy procedure
- It blocks nerve signals that cause bladder muscle spasms
- It can increase bladder capacity and reduce urgency and leaking
- Effects typically last up to a year before a repeat treatment is needed
- It cannot be repeated for at least three months
- Possible side effects include pain, bloody urine, and infection
- One important risk: some people find they cannot fully empty their bladder afterward and may need to self-catheterize Given your history with UTIs, the catheterization risk is worth a very careful conversation with whichever doctor you see next. That's not a reason to avoid Botox — it's just something to go in knowing.

Given how complicated your case is, it may be worth asking your MS neurologist to take a more active coordinating role. Sometimes having your neurologist advocate alongside you can shift how specialists engage with your care.

Other options that exist for bladder symptoms in MS include:

- Medications like antimuscarinics or mirabegron to calm an overactive bladder
- Pelvic floor therapy
- Electrical nerve stimulation techniques

None of these may be new to you after 12+ years, but they're worth revisiting with a fresh set of eyes — ideally someone who will give you more than five minutes.

October 4

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