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A MyLupusTeam Member asked a question 💭
San Diego, CA

Hello
I have been diagnosed with urinary urgency, overactive bladder, urinary incontinence, and urinary retention. My urologist said that I am a good candidate for a bladder pacemaker. I am planning to do the trial and then get the pacemaker implanted if I do well during the trial period. My doctor also said the the bladder pacemaker can cure urinary retention and help me get my life back. I am posting the link to the Axonic bladder pacemaker if anyone else is interested
I might have to wait… read more

Axonics® Therapy | Get Your Bladder Back
Axonics® Therapy | Get Your Bladder Back
June 14, 2025 (edited)
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A MyLupusTeam Member

SM, thanks for sharing this info. Have you talked to your rheumatologist about this, too? I would caution that any foreign body or device in us can potentially become infected, and this risk is increased for those on immunosuppressant medications. You might want to ask your urologist about the data on infection risk, too.

Please keep us posted, and good luck!

June 14, 2025
A MyLupusTeam Member

@A MyLupusTeam Member
Hello
I work for a laboratory specialised in medical devices in urology such as cathéter.
I am in touch with patients who use or tried sacro neuromodulation. When it works everything is fine but when there is no more battery you need to replace it so réopérate again. Personnally I would be afraid of this type of opération as it occurs in this part of the body.

For overactive bladder and incontinence urologist may also propose tibial neuromodulation, it is a device you wear 20-30 min per day during at least 3 months. Sometimes it works sometimes not, but the benefit is that you can do it at home and do not need surgery. Maybe talk of this with your urologist?

Also there is botox injection, but you may need to use catheter (when you find the model that suits you it is not painful).

The thing is that you have both incontinence and rétention. Maybe the incontinence comes from the fact the bladder does not empty totally so there are leaks between mictions.

Have you tried rééducation ?

June 17, 2025
A MyLupusTeam Member

@A MyLupusTeam Member I went through the pelvic floor physical therapy all sessions. It helped a little, but not enough to stop the frequent urgency and I still have accidents.

June 25, 2025
A MyLupusTeam Member

@A MyLupusTeam Member thank you gor responding and you are so educated in this subject it really helps. So botox I cannot do due to too much urinary retention. My life is already so stressful and hectic--- if anything is too much work, I won't get it done mostly due to physical and mental stress. I also have chronic pain and fatigue. Reeducation sounds like a lot of work I am likely to not follow through with. The other non invasive neuro modulation sounds good but after a long day of work, I know myself and I won't do it. I really wanted botox but unfortunately not a candidate. The pacemaker just looks like an easy option for me that I know I will b able to handle.

June 22, 2025
A MyLupusTeam Member

@LeslieEilsel--Those are excellent points, Leslie! More food for thought for you, SM...

I assume you have already had pelvic floor physical therapy, but please pursue this if not.

June 18, 2025

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