Should I keep my InterStim Implant Appointment?

[EcoIncon]

I had done the InterStim trial pre-COVID and my surgery was cancelled. They finally got me rescheduled today. I am wondering from any of you that have had it.

1) Did it help? Even beyond the first year or so?
2) If you had a do over would you still do it?
3) What were the best/worst things about it?
4) Were you able to get completely out of diapers?

I am just not sure I would go through with this if I know I will still have to wear diapers. I hear lots of people saying it helps but wasn't a total solution... if I'm still running around with protection on every day and I just have less episodes... has that really helped?

 

[ltaluv]

I got my Interstim in November 2020. It's the newer version with an MRI mode and MRI-acceptable leads.

1. Mine has helped and continues to help with bladder pain, and it reduces the number of episodes of urgency. The pain reduction helps avoid bladder spasms, which helps my incontinence. I have tried turning it off, and the pain increases after a couple of days.

2. Yes, I would do it again. Mine is not the rechargeable model, so I'll need to replace it in 8-10 years. As long as the results continue to be what I've had so far, I'll go ahead and replace it when the time comes.

3. The best thing is the relief of pain from interstitial cystitis. I go days at a time hardly thinking about my bladder, where before it was something that demanded my constant attention. The worst parts are the surgery itself, which took a few weeks to fully recover from, and the hassle of getting MRIs scheduled - imaging centers seem to want a bunch of extra documentation showing that it's really MRI acceptable.

4. In conjunction with botox, I'm mostly out of diapers. I still need diapers as the botox injections wear off after three months or so, meaning the Interstim by itself hasn't been quite enough. I also wear a diaper if I'm going to be somewhere that I can't just get up and use the restroom if needed (during MRIs, airplane flights, that sort of thing).

In summary, Interstim hasn't been a total solution for my incontinence, nor has botox. Together they form a solution for probably 80% of the time. Even if I have to go back to wearing dialers full time at some point, the pain relief and the reduction of urgency make the Interstim worthwhile for me.

 

[Pino]

My doctor offered the InterStim as an alternative to the Botox injections, but i declined for now, because i would not be able to do my sports any longer.

On the German UI Forum where i am also active many did this already, most, but not all, are very happy with it. Very little complications but sometimes it just did not work as expected, but that is what the trial is for.

When there are no other things, like sports, getting in your way, just try it, i think.

 

[EcoIncon]

My doctor offered the InterStim as an alternative to the Botox injections, but i declined for now, because i would not be able to do my sports any longer.

On the German UI Forum where i am also active many did this already, most, but not all, are very happy with it. Very little complications but sometimes it just did not work as expected, but that is what the trial is for.

When there are no other things, like sports, getting in your way, just try it, i think.

@Pino ... they had not discussed with me the prohibition on sports. I am an avid runner, biker and swimmer. Is it just contact sports like soccer (football where you live) as far as you know? I can't find any reference to problems with things other than contact sports. Thanks to both you and @ltaluv for your advice.

 

[Pino]

@Pino ... they had not discussed with me the prohibition on sports. I am an avid runner, biker and swimmer. Is it just contact sports like soccer (football where you live) as far as you know? I can't find any reference to problems with things other than contact sports. Thanks to both you and @ltaluv for your advice.

Hi EcoIncon,

well, not all sports are prohibited, Swimming and Biking are O.K., as far as i know, Running can be a risk.

My sports is Judo and BJJ, besides Biking. Especially Judo is an absolute NoGo for the IS.

Every Sports witch "shocking" movements should be avoided.

 

[EcoIncon]

Hi EcoIncon,

well, not all sports are prohibited, Swimming and Biking are O.K., as far as i know, Running can be a risk.

My sports is Judo and BJJ, besides Biking. Especially Judo is an absolute NoGo for the IS.

Every Sports witch "shocking" movements should be avoided.

I can certainly see how Judo would be an issue

 

[cm90210]

I had done the InterStim trial pre-COVID and my surgery was cancelled. They finally got me rescheduled today. I am wondering from any of you that have had it.

1) Did it help? Even beyond the first year or so?
2) If you had a do over would you still do it?
3) What were the best/worst things about it?
4) Were you able to get completely out of diapers?

I am just not sure I would go through with this if I know I will still have to wear diapers. I hear lots of people saying it helps but wasn't a total solution... if I'm still running around with protection on every day and I just have less episodes... has that really helped?

1. Mine helped a lot. I’m nearing 2 years and I’ve experienced a little regression in symptoms. But overall still vastly improved over my worst.
2. Yes without doubt.
3. Best it works. Worst, requires surgery. Sometimes has weird sensations or even fleeting pain when I’m in the wrong position.
4. Yes - back to pleasure only again.

 

[ltaluv]

@Pino ... they had not discussed with me the prohibition on sports. I am an avid runner, biker and swimmer. Is it just contact sports like soccer (football where you live) as far as you know? I can't find any reference to problems with things other than contact sports. Thanks to both you and @ltaluv for your advice.

My doctor had zero problem with me running after my Interstim surgery. I'm not currently running because of torn cartilage in my hip, but I can't wait until I can get that repaired and get back to running.

I don't know if it varies from doctor to doctor, or patient to patient, but some people get told that it's no problem and others get told it is. It's definitely something to discuss with your doctor if you want to keep running after getting an Interstim.