Interstim or botox thoughts?

[mirrored22]

I had a urology appointment yesterday for my OAB and since my medication therapies don't seem to be helping much my doctor offered some different procedures as options to try. I was a bit blindsided as I didn't realize my issues were this bad to justify such an intervention, I was wondering what some other users here experiences with these therapies were. Did they help? Were there any downsides or complications?

The risk of retention with Botox scares me a little so I instantly want to avoid that one. Part of me wants to say screw it and just manage with diapers and lifestyle changes, but I wonder what life would be like without this constant need to go all the time. I told my doctor I wanted to try some lifestyle changes (quitting smoking and losing more weight) to see if they help and to buy myself time to think about it. Both of these seem like big changes and they are scary to think about.

Thanks for any insight!

 

[checkingoutall]

@mirrored22, I went through all the medictions and nothing helped. The side effects were also really bad. My urologist offered botox and intertim as well.

I let both of my urologist do botox injections just to see if it was really worth it, if it would help or not and it really didn't. Both times the procedure was done at a hospital in the OR. I was knocked out for them. The botox slowed down some of my wetting but it didn't stop it all the way so I still had to wear diapers. So if I still had to wear diapers why waste money on botox.

The intersem, sounded interesting but I am not a candidate for it because where I work there is high levels of magmatism that would damage the device. I attended a special meeting that my urologist office put on about the interstem. The manufacture rep was there and really explained everything about it and he did say this isn't a cure, it's just to help lessen incontinence.

I finally told both of my urologist that all the different medication, procedures wasn't making my quality of life better but wearing diapers did. Once they both saw that it was true, they both accepted it but wanted yearly scan of bladder and kidneys to make sure there isn't any other damaging happing.

My advise is to do what you feel/know would allow you to enjoy your quality of life that you need to live, not what the doctors fell you should live.

 

[Eclectic]

There are members here who have tried both. Hopefully they will respond. I started going through all the options over 20 years ago when my bladder urgency became severe (a few seconds till I peed vs a few minutes).

The drugs didn’t work for me and I had lots of side effects. I have spoken to urologists about Botox and Interstim. In the end, I came to the same conclusion as @checkingoutall, none of these things are cures and the best management method that I am comfortable with are diapers. This is because of my very long history of wearing diapers, my regular bowel incontinence, and my extremely active work and home life, particularly outdoors. But, everyone is diffferent and so is your situation.

 

[Edgewater]

Was in recently for my every few years scope of my bladder. This time, I could see what the Doctor saw on a larger screen and all the scar tissue from being sewed back together, plus several blood vessel masses on the walls. What came of it all was a UTI seen as a couple of foggy areas, but little else. I was prescribed antibiotics.

As usual, the expansion caused by the scope has increased my flow, but that commonly ends after about a month. The normal discussion occurred regarding Botox and Interstim (which, I am not a good candidate for) and other medication and my long history regarding their side effects. The point being, my version of U-IC is the effects of the post car crash surgeries and resulting damage of my L5-S1 region causing varying levels of communication between the mind and the Kidneys.

Long way of saying; because the vast number of causes of IC it is not at all uncommon that our Doctors are faced with trying different tools. Kind of like throwing mud on the wall and see what sticks. It may sound odd, but having dealt with this for near 46 years, I have come to understand the reality of what has been stated above; You have to choice what provides you, your best Quality of Life!!

 

[Pongoandperdi15]

I'm the opposite of you I suffer from retention they offer the interim device for that as well. For me in hindsight I was coping just fine using incontinence pads (nappies) for many years till I got a kidney stone, then urology got back involved in my life and told me I had to do ISC I've had no end of infections and wish I could go back just get treated for my initial infection after the kidney stone and go back to nappies i was coping then, I'm not coping now.
What you have to remember about doctors is all they work for is fixing things and I understand that they don't understand why you would want to just cope with something, it's because coping with something doesn't cause any further problems where as introducing something new into the equation can create further complications.

 

[mirrored22]

Thanks guys for your impressions and thoughts. Looking at this thread and other impressions from other support groups, I get the impression that it's not a cure all at all. Pretty much every remedy for this out there is suboptimal and the idea I had of living life without these problems is not really a possibility, a realization that is both brutal and freeing, as I can just stop feeling guilty for managing this my way.

I feel like I want to avoid retention so don't want to risk botox, and I'm too young to be a cyborg with the interstim. Not when there is more I can do to try and fully exhaust lifestyle modifications and when I have diapers as an option to manage. So thank you all for your insight!

 

[hbic60]

The risk of retention with Botox scares me a little so I instantly want to avoid that one. Part of me wants to say screw it and just manage with diapers and lifestyle changes, but I wonder what life would be like without this constant need to go all the time. I told my doctor I wanted to try some lifestyle changes (quitting smoking and losing more weight) to see if they help and to buy myself time to think about it. Both of these seem like big changes and they are scary to think about.

I've combined dribble- and urge IC and had the same thoughts after diagnosis and deep talk with my doc. He was aware that I have absolutely no problem to handle my IC issues simply with wearing protection. He told me just to go on with that as long as I'm comfortable doing this. Whenever I'm not any more I should come back to him, then we could try out lowering the urges with some meds (with not very nice side effects), but he made clear that this could only decrease, but not heal my IC. Additionally we also talked about Botox treatment, but he's not a big friend of that; Of course, if well done, it could decrease my IC issues quite a lot for about 3-5 months (maybe with issues at the beginning with retention, which could lead to the need of self-catheterizing 3-4 times a day for up to two weeks), but then IC comes back and treatment has to be repeated. In his eyes the effects of long-term treatment multiple times in a row with a neurotoxin (which botox is...) are not purely undisputed and all of this does not let me feel good for that solution.
Also an Interstim doesn't sound attractive for me. Generally I'm OK with wearing protection, I have no pain with my IC and can live my life nearly in the same way as without my IC - so why should I switch from a - for me - comfortable, side-effect-free solution to any more or less invasive solution without guarantee that my IC is healed but mostly only reduced?
So I decided to leave my IC treatment as it is. Whenever I'm not comfortable any more with wearing protection I can always go for example the path of Botox treatment or trying meds against the urges, it doesn't matter at all if I've worn before diapers for years or not...

 

[Pino]

Thanks guys for your impressions and thoughts. Looking at this thread and other impressions from other support groups, I get the impression that it's not a cure all at all. Pretty much every remedy for this out there is suboptimal and the idea I had of living life without these problems is not really a possibility, a realization that is both brutal and freeing, as I can just stop feeling guilty for managing this my way.

I feel like I want to avoid retention so don't want to risk botox, and I'm too young to be a cyborg with the interstim. Not when there is more I can do to try and fully exhaust lifestyle modifications and when I have diapers as an option to manage. So thank you all for your insight!

I am a little late, i do Botox once a year and Interstim had been offered to me as well.

Interstim is not an option for me at the moment, but maybe in the future perhaps.

I do Botox once a year in June, it works good for me for about two up to three month, getting significant lower from than on. But i can go with light protection over the hottest summer month and holidays. BUT i have to use ISC for retention in that time. Not problem with that on my side.

For the rest of the year i am diapered, during winter i do not have many issues with that.

Botox is not a game changer, but it helps a lot with the urge and expands your bladder wall a little, so it prevents a shrinking bladder over time.
My urologist is really good at it, only local anesthesia in the wall, 10 minutes procedure, no pain, no big deal.
I do get checked everything with it, "part of the packet" i think, not bad when you have constant problems.

 

[ltaluv]

TL;DR I've been helped tremendously by both Botox and Interstim. I get to go without diapers for months at a time.

Long version:

If you read forum posts, you'll get the impression that nothing works for incontinence. This is because the people who frequent incontinence forums are the ones for whom nothing has worked. The people whose problems are completely solved by Botox, Interstim, or other treatments aren't here - they've got little need for incontinence forums.

I've had Botox treatments going back to maybe 2015, and I got an Interstim in late 2020. This is to treat a combination of interstitial cystitis (IC) and overactive bladder (OAB). Note that in my discussion here, my references to IC are to interstitial cystitis.

I've gotten Botox every 4-6 months for years. I've had difficulty with retention after the treatment, but this usually resolves after a month or so, and I'll get 2-3 months of being dry before my incontinence starts up again and it's time for another treatment. I have to do intermittent self catheterization for the few weeks after a Botox treatment, which with the right catheters (hydrophilic ones that self-lubricate) is painless and easy for me. I find the ability to not need diapers for months at a time is worth it.

It's worth noting that I've just had surgery for an enlarged prostate, and that's eliminated my need to cath daily that's been going on for about a year. I'm hopeful that I won't need to cath after my next round of Botox, either, though I don't know yet if that's going to work out.

I've had my interstim for about three and a half years. It's helped a great deal with the pain from my IC, which in turn helps reduce the number of episodes of urgency and incontinence. It hasn't eliminated the urgency, but reducing my bladder pain from severe to mild or moderate has dramatically improved my quality of life. Even when I was out of diapers with botox treatments, the pain I had before the Interstim surgery could be debilitating, to the point that I'd asked my urologist about removing my bladder and having a urostomy instead. I still have pretty bad pain from IC, and I may eventually push for bladder removal, but the Interstim has been fantastic in keeping it tolerable most of the time.

To summarize, both Botox and Interstim have been important tools in managing my bladder pain and urge incontinence. I'm probably diaper-free 60% of the time, and I get plenty of warning that I'm headed back into a problematic period before I start having accidents again. When everything is stable, it's 6-8 weeks of diapers, then 8-12 weeks of no diapers. Not as ideal as never needing diapers, but way better than being in them all the time.

 

[newt]

To summarize, both Botox and Interstim have been important tools in managing my bladder pain and urge incontinence. I'm probably diaper-free 60% of the time, and I get plenty of warning that I'm headed back into a problematic period before I start having accidents again. When everything is stable, it's 6-8 weeks of diapers, then 8-12 weeks of no diapers. Not as ideal as never needing diapers, but way better than being in them all the time.

This post was super informative! Thank you for taking the time out to write it!

Botox has been something I have flipped flopped between for years. Most of my fears come from potentially need caths. When I was younger with a ruptured appendix in the hospital, one of my nurses absolutely bungled the catheter. It hurt more than anything else, and thats saying something when an organ ruptures and spills bacteria into your body. So I've been very wary about trying it again.

At the same time, even being out of diapers for 50% of the time sounds great. Even if it doesn't cure it. It the fight between fear and hope.

One of the things that worried me most is something you discussed. I always worried if I'd know when it was starting to wear off. Because if I didn't, the anxiety of worrying if I might have an accident without a diaper when it would wear off was a huge turn off.

 

[sledder23]

Since urge urinary incontinence set in 4 years ago, I’ve had to evaluate what would work best for me. I’ve implemented behavioral changes (diet, exercise, timed voiding, cessation of alcohol, etc. ). After looking at the next pharmacological or surgical steps, I decided that management with diapers was the least risky and least invasive and most cost effective approach that would provide the most normal parallel to my regular pre-incontinence busy lifestyle.

I keep close tabs on my disease to slow/prevent further progression and limit future complications, and I am keeping my doctor in the loop with regular follow ups to monitor any changes in my disease, but regarding my incontinence, I find the best management approach is with diapers knowing that it can’t be cured and is likely going to be a permanent condition.

Like others have said, do what works best for you and your situation. Diapers may not be the best solution, and like Italuv, there may be an alternate solution that works. It’s a very personal decision with many options that aren’t necessarily one size fits all.

 

[Pino]

One of the things that worried me most is something you discussed. I always worried if I'd know when it was starting to wear off. Because if I didn't, the anxiety of worrying if I might have an accident without a diaper when it would wear off was a huge turn off.

Of course i can only tell for me, but it is really easy to know when the Botox looses its effectiveness. My "without" Botox bladder capacity is about 300ml, when Botox kicks in, this goes up to 600ml. I do measure from time to time and simply see it when getting less again.
Beside that, i wear protection all the time, just much lighter one, like some pants, just in case.

About ISC, my first catheters were the ones for my first UDM. The doctors caused me a lot of pain, same for reversal. Next time was for my first Botox injection, the placement was under anesthesia, but the removal was on the next day, and hurt a lot.

My decision was to learn that as fast as possible myself to prevent pain in the future. One key aspect is finding the right catheter for you personally, i tried about 20 different types, some did not work at all for me. I found one that is good and was easy and painless to use.
You could try it to get over the trauma you got as a kid. I must not be bad, trust me.

 

[mirrored22]

TL;DR I've been helped tremendously by both Botox and Interstim. I get to go without diapers for months at a time.

Long version:

If you read forum posts, you'll get the impression that nothing works for incontinence. This is because the people who frequent incontinence forums are the ones for whom nothing has worked. The people whose problems are completely solved by Botox, Interstim, or other treatments aren't here - they've got little need for incontinence forums.

I've had Botox treatments going back to maybe 2015, and I got an Interstim in late 2020. This is to treat a combination of interstitial cystitis (IC) and overactive bladder (OAB). Note that in my discussion here, my references to IC are to interstitial cystitis.

I've gotten Botox every 4-6 months for years. I've had difficulty with retention after the treatment, but this usually resolves after a month or so, and I'll get 2-3 months of being dry before my incontinence starts up again and it's time for another treatment. I have to do intermittent self catheterization for the few weeks after a Botox treatment, which with the right catheters (hydrophilic ones that self-lubricate) is painless and easy for me. I find the ability to not need diapers for months at a time is worth it.

It's worth noting that I've just had surgery for an enlarged prostate, and that's eliminated my need to cath daily that's been going on for about a year. I'm hopeful that I won't need to cath after my next round of Botox, either, though I don't know yet if that's going to work out.

I've had my interstim for about three and a half years. It's helped a great deal with the pain from my IC, which in turn helps reduce the number of episodes of urgency and incontinence. It hasn't eliminated the urgency, but reducing my bladder pain from severe to mild or moderate has dramatically improved my quality of life. Even when I was out of diapers with botox treatments, the pain I had before the Interstim surgery could be debilitating, to the point that I'd asked my urologist about removing my bladder and having a urostomy instead. I still have pretty bad pain from IC, and I may eventually push for bladder removal, but the Interstim has been fantastic in keeping it tolerable most of the time.

To summarize, both Botox and Interstim have been important tools in managing my bladder pain and urge incontinence. I'm probably diaper-free 60% of the time, and I get plenty of warning that I'm headed back into a problematic period before I start having accidents again. When everything is stable, it's 6-8 weeks of diapers, then 8-12 weeks of no diapers. Not as ideal as never needing diapers, but way better than being in them all the time.

Thanks for sharing your insight! Interestingly enough, in my research on forums and other support groups, your experience isn't underrepresented from what I've seen. I saw some folks who said that it helped but wasn't a cure all and that seemed to be the common experience. That is great that it gave you so much relief! It definitely seems like its been a lot more effective than medication therapy has been for many, especially for folks dealing with IC. Fortunately I feel like my symptoms are fairly mild, only dealing with low capacity and frequency issues, with very manageable pain/pressure. I can manage in underwear still if I need to, after all, I just hate constantly feeling like I need to pee all the time!

Did you notice any side effects from the Interstim device? Does having it installed stop you from doing anything or interfere with your life at all?

I am a little late, i do Botox once a year and Interstim had been offered to me as well.

Interstim is not an option for me at the moment, but maybe in the future perhaps.

I do Botox once a year in June, it works good for me for about two up to three month, getting significant lower from than on. But i can go with light protection over the hottest summer month and holidays. BUT i have to use ISC for retention in that time. Not problem with that on my side.

For the rest of the year i am diapered, during winter i do not have many issues with that.

Botox is not a game changer, but it helps a lot with the urge and expands your bladder wall a little, so it prevents a shrinking bladder over time.
My urologist is really good at it, only local anesthesia in the wall, 10 minutes procedure, no pain, no big deal.
I do get checked everything with it, "part of the packet" i think, not bad when you have constant problems.

Expanding the bladder wall sounds promising. My capacity when I had my urodynamics exam was 215ml so finding a way to increase that seems like a dream! But doing so at the cost of dealing with retention and having to do ISC feels like too great of a cost when I currently have no retention issues at all. The few times I've had to deal with catheters have been so unpleasant and painful I want to put something like that off as long as I can. But it does make a lot of sense for someone if they already deal with retention as it isn't introducing anything new. Thank you for sharing your insight!

 

[ltaluv]

I rarely even think about my Interstim. It does not affect my day-to-day life at all, and it's never kept me from doing anything I wanted. Contact sports would be inadvisable, but I don't do any kind of contact sports anyway (I'm a road cyclist, and if that's a contact sport, then you're doing it wrong!)

The only times I think about the Interstim are when I have an MRI (mine has the MRI-rated leads, but I'm limited to a 5T magnet), when I'm going through airport security (never had it flagged, but it could happen), or if I'm having surgery and need to turn it off. If I turn it off for surgery or an MRI and forget to turn it back on, I don't notice anything different for a couple of days, but then it becomes really obvious from all the bladder pain that I forgot it. So I know it's working, but I never feel it, and rarely have to do anything with it.

Written I had my colon and rectum removed last year, I had an interesting experience where the Interstim wouldn't torn back on. I had to call the factory rep to enter a code to do a power-on reset to get it working again. I think the extensive electrocautery they did during the surgery probably confused it even though it was off. It was about six hours of surgery, so lots of opportunities for the Interstim to get it's memory wiped out. Once it was reset, though, it's back to working fine.

 

[OebDowns]

It can be overwhelming to suddenly be faced with the prospect of procedures when you thought things weren't that bad. But hey, it's awesome that you're taking steps like quitting smoking and focusing on weight loss. Those are big changes, but they can make a huge difference not just for your OAB but for your overall health too. As for Interstim or Botox, I haven't tried either personally, but I've heard mixed things.

 

[cm90210]

I have a Medtronic interstim and it has been life changing. I no longer have accidents (rare) and my frequency and urgency have drastically decreased to what I’d consider normal. I still use pads for drops and drips but it’s very minor. I’m so glad I got the implant!!

 

[OebDowns]

It can be overwhelming to suddenly be faced with the prospect of procedures when you thought things weren't that bad. But hey, it's awesome that you're taking steps like quitting smoking and focusing on weight loss. Those are big changes, but they can make a huge difference not just for your OAB but for your overall health too. As for Interstim or Botox, I haven't tried either personally, but I've heard mixed things.

Some folks swear by them and say they've been life-changing, while others have had complications or weren't satisfied with the results. It's definitely a tough decision to make. Argireline, huh? I've seen that ingredient pop up in skincare products, but I didn't realize it could have applications beyond that. Interesting stuff!

 

[jamie72]

I have had both

Botox did not really make any difference

Interstim has helped - but still have issues - however if in the house close to a toilet I can now get away with wearing normal underwear - If I go out I am always padded as cannot hold it very long at all

 

[moorey]

I'm the opposite of you I suffer from retention they offer the interim device for that as well. For me in hindsight I was coping just fine using incontinence pads (nappies) for many years till I got a kidney stone, then urology got back involved in my life and told me I had to do ISC I've had no end of infections and wish I could go back just get treated for my initial infection after the kidney stone and go back to nappies i was coping then, I'm not coping now.
What you have to remember about doctors is all they work for is fixing things and I understand that they don't understand why you would want to just cope with something, it's because coping with something doesn't cause any further problems where as introducing something new into the equation can create further complications.

Better the Devil you know

 

[virginiadiaper]

So my urologist recommended interstim but I am really worried about the complications and rate of ineffectiveness. It sounds like it loses effectiveness by 5 years for many and about a 1/3 end up with some sort of complication. It doesn’t sound like it is so effective that it eliminates needing diapers for most. 50% effective means I just go from 4 diapers to 2 diapers instead. It just decreases the amounts. He recommended against Botox due to some retention at baseline. So I think I’m going to hold out on interstim for a while and see if some other better technology comes along. Has anyone else decided against doing more and just accept the status quo.