Anyone have sacral neuromodulation (InterSTIM) for bladder issues?

Posted by cindybp @cindybp, May 16, 2024

I have a neurogenic bladder with idiopathic urinary retention. I’ve had two cystoscopies that were negative for problems except my bladder is floppy and enlarged. I’ve been through urodynamics and my bladder has limited functionality. They’ve recommended the MedTronic InterSTIM (I believe that is correct).

I’m reluctant to proceed with this because I want to know what caused this problem. Is it the same reason I have IBS-C? I understand idiopathic means they don’t know why, but I don’t want to focus on the problem if it’s part of a bigger picture. Is it possible I have a neurological disease like Parkinson’s or MS?

I’d sincerely appreciate hearing from others who’ve experienced this?

Interested in more discussions like this? Go to the Bladder Conditions Support Group.

I've had bladder problems for years, urologist has brought this device up a few times. My issues are under active, bladder doesn't empty, UTI's often. I'd like to know more about others individual situations.

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Also diagnosis of hypertonic pelvic floor dysfunction. Constant burning pain that feels like UTI pain.

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Profile picture for cindybp @cindybp

Thank you for writing. I have opted not to follow the recommendation for the InterSTIM.

I am taking Methenamine to prevent UTIs and have been very satisfied with this approach for my problem. My bladder is under active and thus oversized and my issue is non-urgency. I drink about 100 oz water daily so I go regularly. I’m retired so I think nothing of it. My previous life as an Ed Tech at school no doubt contributed to my condition.

I hope you post again to let me know how you make out with your new device. You’re the first person I’ve ever heard from. Thanks again.

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@cindybp
I am 73 year old female w/undertactive bladder. Self cath 3/day. I was having frequent uti but now on antibiotic once daily(cefdinir 300) going on 6 months. No UTIs, so happy.
I am concerned about long term use of antibiotics and am interested in what you are taking. Any side effects with methenamine?
I too am not interested in InterSTIM, at least not right now.
I was so active before this all started (going on 2 years)and now I don't want to do anything.
Thanks.

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I’m very happy taking Methenamine. I stopped self-catheterizing. Life is back to normal for me. I drink at least 100 oz of water daily so I stay flushed out. My urologist couldn’t dispute my case against the STIM. Thank goodness because I could foresee more problems than it solves!

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Profile picture for jarviscloutier @jarviscloutier

@cindybp I have the same issues as you, bladder doesn't empty completely-enlarged. I drink a lot of water. I have to self catherize once a day, I get UTI's frequently. Urologist brought up the Interstim again yesterday, was originally given info on it 10 years ago. It would be SO nice to have someone with the same issues to talk to about this stuff! I'm curious about the med you are taking for UTI's, going to read up about it. How long have you had bladder issues? I have so much I want to ask you.

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@jarviscloutier I’m not so sure I have a lot of answers. I can tell you Methenamine has been enough to prevent UTIs which is worth soooo much! It’s an antiseptic taken twice a day. I have to drink a lot of water every day because I get dry. I rarely drink more than 2 cups of coffee in the morning and I stopped drinking soda and tea. I drink at least 100 oz of water and eat lots of fruits and vegetables. I’m not sure if any of that matters except the water intake. I no longer self-catheterize either. I could see how that was a potential problem waiting to happen! I could also see how the STIM could affect quality of life, too.

Good luck. ~cbp

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I was a teacher assistant so I didn’t have enough bathroom breaks. Apparently that’s a classic example of someone with that diagnosis. Tell your urologist you want to try Methenamine.

If your gastroenterologist has you taking Omeprezole or any other proton pump inhibitors tell them you want to try just Famotadine (Pepcid) (and Gaviscon as needed) instead. And switch from Metamucil to Benefiber. That’s where I landed in my quest for a cure and it has been successful for over 3 years! Don’t forget water and vegetables! Fruit is tricky.

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Profile picture for heaviside @heaviside

@jerseymom71
hi Heather
I am the 82 year old male who is in the midst of a trial of the interstim.

I had two two wires implanted last Tuesday 11/4/2025, will have them out next Tuesday, and looking to see the improvement.

so far some but it is improving as I turn up the current in the wires.

If I get to 50% improvement I will almost certainly go for the permanent implant.

could I ask you why you are on your third? Is it battery failure? Do you like the results?

thanks

John

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@heaviside
My first one was in 2022, and I had to manually charge my device once a week. I started to have some issues with the charging lasting the full week, and they came out with a new one that had a battery ( 5yr life), so I upgraded. The upgraded one within a short time started to malfunction and shock me Periodically. I would have little black marks from it all over my back side, and if you were quite around me you could hear a noise coming from the area of the battery. My new one is great so far and its been almost a full year now. This new one allows me to have x-ray without turning it off, and has a MRI option. This was a big thing for me, as I was afraid if I needed to have urgent medical care and no one knew, the outcome wouldn't be in my favor. The only down side I have is that I get numerous UTI's now( about a dozen each year). so I'm constantly on Nitrofurantoin Monohyd to clear them up quickly.
Even with everything, I'm beyond happy with my choice.

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Profile picture for jerseymom71 @jerseymom71

@heaviside
My first one was in 2022, and I had to manually charge my device once a week. I started to have some issues with the charging lasting the full week, and they came out with a new one that had a battery ( 5yr life), so I upgraded. The upgraded one within a short time started to malfunction and shock me Periodically. I would have little black marks from it all over my back side, and if you were quite around me you could hear a noise coming from the area of the battery. My new one is great so far and its been almost a full year now. This new one allows me to have x-ray without turning it off, and has a MRI option. This was a big thing for me, as I was afraid if I needed to have urgent medical care and no one knew, the outcome wouldn't be in my favor. The only down side I have is that I get numerous UTI's now( about a dozen each year). so I'm constantly on Nitrofurantoin Monohyd to clear them up quickly.
Even with everything, I'm beyond happy with my choice.

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@jerseymom71
How can you be satisfied with it if you’re enduring UTIs so often?

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Profile picture for jerseymom71 @jerseymom71

@heaviside
My first one was in 2022, and I had to manually charge my device once a week. I started to have some issues with the charging lasting the full week, and they came out with a new one that had a battery ( 5yr life), so I upgraded. The upgraded one within a short time started to malfunction and shock me Periodically. I would have little black marks from it all over my back side, and if you were quite around me you could hear a noise coming from the area of the battery. My new one is great so far and its been almost a full year now. This new one allows me to have x-ray without turning it off, and has a MRI option. This was a big thing for me, as I was afraid if I needed to have urgent medical care and no one knew, the outcome wouldn't be in my favor. The only down side I have is that I get numerous UTI's now( about a dozen each year). so I'm constantly on Nitrofurantoin Monohyd to clear them up quickly.
Even with everything, I'm beyond happy with my choice.

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@jerseymom71
hi Jerseymom71

thanks a lot for your reply. I have decided not to do the STIM because in the one week trial I got no improvement in my urinary frequency at night. I am going to go to a botox injection and see how that works

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