New interstim implant advice needed, please

Settings that aggressively calm the bladder muscle (detrusor) to fix urgency can inadvertently "over-relax" it, making it too weak to pump out urine, thereby increasing retention and forcing her to self-catheterize.The Solution: The device has multiple electrical pathways (electrodes) and customizable parameters like pulse width and frequency. Device representatives and urologists can often find a "middle ground" program that subtly targets both symptoms without swinging too far in either direction.

Please be reassured that this is still a troubleshooting phase and not a definitive treatment failure. Because you just received the implant this summer, your nerves and tissue are still adapting, and finding the "sweet spot" for mixed symptoms frequently requires several rounds of program adjustments over the first few months.

@jarviscloutier Thank you so much for taking time to reply. I feel grateful that others have experience with this and can help me figure it out. I have used program 3 @ 1.0 and at 1.4 ( each for a few weeks and saw no decrease in urgency and leaks. So 2 weeks ago I switched to program 1 at 1.0, and still had a lot of leaks, and retained more I think since I now have a UTI.

I had my implant about a month ago and the Interstim rep started me at 3 program 5. She called frequently at first but has not called for the last couple of weeks so I have gradually increased it to a 4. I think I am too impatient but frequency is less but still have accidents and am up every 3 hours during the night. Overall I think it was worth it

It's so difficult navigating self Catherizing and avoidance of UTIs'!!! It's so much adding "insult to injury"! I myself experience UTIs' and have been self cathing for a little more than a year. Recently I had gone from once daily way down to once a week as I just feel no matter how clean you are, no matter how careful-every time you cath you are potentially introducing bacteria into your urethra. I myself was encouraged to try the InterStim many yrs ago, and then again a little over a year ago. I, like you don't void completely. I just decided not to go that route. For other reasons besides this, I've been really working on strengthening my core-doing pelvic tilts, etc. You can look up different stretches/excersise to do to strengthen your core. I have felt since doing these my ability to void more thoroughly has improved. Also Urology found that I have an actual little pocket that had developed off my bladder where urine doesn't get totally eliminated from. I have a theory that this pocket developed from as a child my mother was very hard on me during toilet training, so I developed a habit of "holding my urine"..I even read in different areas that this is one of h=the direct causes for women who develop pelvic/bladder issues later in life. Like some people who suffer from migraines-maybe they carry all thier stress in thier neck/shoulder areas, I've been told I carry my stress in my pelvic region, So I was actually diagnosed with Hypertonic pelvic floor muscle disfunction.From the chronic tension and muscle tightness I have a chronic aching/pain like a burning sensation much like when you have a UTI. I was wondering if anything Ive said about me you can relate with? It's so nice to connect with others with same issues/worries. I am several yrs older than you but have dealt with these issues most of my life. If you want to friend request on FB we could "chat" about this more if you'd like.

I am considering InterStim as an alternative to self-cathing. I have only been doing this since May (5X per day) and have been lucky not to encounter UTIs. The catheter I was using, VaPro Pocket, which is a closed system catheter, makes life easier especially when getting up at night. The catheter itself never touches anything outside of the body and is very hydrated which limits friction. Unfortunately, since I started on Medicare in July, those are only covered with strict requirements like spinal cord injury, or more than 2 UTIs. This brand may be an option for you since you experience a lot of UTIs. If you need info on where to get them, I can provide the company information.
I am currently supplementing my current GC Air catheter with the VaPro Pocket for night-time use to save me time in the middle of the night, but the cost is out of pocket. My sleep suffers. So.. I am planning to select a doctor for consultation on the Interstim, but I need it for under-active bladder. My urologist doesn't recommend it because he says its only for overactive bladder, but the website and the representative indicate its use for under-active bladder. And a second opinion never hurts. Is anybody aware of InteStim use for under-active bladder? I did put this out on another forum, but have not had any response indicating use or success for under-active.

Also, with use of your InterStim, are you limited with physical activity? I am fairly active with outside activities like bike riding, Pickleball, etc, so I am concerned about line placement and potential shifts. I will find out all about this during the consultation, I'm sure, but would love actual user feedback to help make a decision, and it sounds like there may be some knowledge here about the actual functionality of the device.

@jarviscloutier I appreciate this information so much. I was just considering setting up physical therapy at a pelvic floor strengthening clinic. I think I will do that based on your recommendation. I’m so sorry you have a chronic pain from the muscle tension/tightness. I have no pain there.

@markpsp My urologist had me strictly limit my activity for two months after my implant. It was tough to give up biking and hiking all summer. She said u could go for walks and the most I did was about 2 miles slowly. But she wanted to make sure the leads that she had put in etc. had time to develop scar tissue and stay in place. I’m gradually trying to build my activity level up again now. I hope things are in there solid now,.

I’m still trying to figure out the right settings and have not had the chance I’m hoping for yet.

@janetexmsrrose I am feeling impatient too! Ugh! But I’m sure eventually I’ll find the right settings. My rep texted today and I’m going to switch to try program 4 @ 6 and see what this does for two weeks. Good luck with your continued progress!

@kimmylew let me know what works for you. Great to know someone else is going through this