InterStim-last hope?

[tacy99]

I have had frequency/uregency and retention for several yrs. I am 42. I began self-cathing about 3 yrs. ago because of severe retention issues that led to frequent uti's. After an abdominal hysterectomy for fibroids that were pression on my bladder I have had severe PFD. My external sphincter will not relax enough to let much urine pass. I have had an indwelling catheter in for over a year, changing to a supra-pubic in Nov. '06.

I have been doing PF PT for over a year, tried many meds, bio-feedback, hypnosis, yoga, relaxation. No cure for my urinary problems.

I have the Stim scheduled for May 21. My dr. has done more than 200, but none for anyone with retention the way I have it, mis-communication between bladder and sphincter. I've called three InterStim conference calls and told my type is very uncommon but I should try it.

In the past 8 weeks I've been in the hospital twice, 3 days and then 5 days for kidney infections. I need to try something else. I'm mostly concerned if it doesn't work, then what??? I'm out of options?

I'm also terrified of another surgery. I went into the hyst. a little messed up and came out completely wrecked!

Any input would be greatly appreciated.

[dancemomof2]

Wish you all the luck in the world.

[tigger_gal]

sending you out big hugs.. you really have nothing to lose by giving the interstim a try. I wish you the best of success.

[humpieumpumkin]

Me too,hope it helps you sooooooooooooooo much!

Erika

[patricia1]

You know actual the InterStim is FDA approved for urinary retention. But while not approved yet for IC the urgency and freq it does help many.

You should be able to tell during the trial whether or not this will work for you. And should it not please dont give up, keep going. I have really bad IC and have had 2 InterStim and had both removed, but I refuse to give up that event. I will find something that will help me.

I know being scared of having another surgery, but hopefully this one will turn out good for you and be something that will totally turn your life around.

[DebbieB]

Hi tacy99 ;

Gee, you sound so much like me with all my problems of retention that I had. I also did self-cathing for over a two and half year span until I had the InterStim done and that will be eight years on April 20 with the InterStim ..

I also did all the stuff you mention and it did not help me with any of the these things..
I wish you all the best and you will know more when you have the trial done and as I say to everyone doing this procedure you will never know if it will help you until you try it to..

[tacy99]

Thank you everyone for the input. I'm commited to doing the trial and see how it helps.

I am wondering what limitations you had during recovery, and what permanent or long term effects you've noticed. One dr. told me I could never horseback ride again, another said I see no problem with it. What about bike riding? I know about mri's. I'm wondering about the things the medical community doesn't tell you. Please be honest.

Thanks!

[DebbieB]

Well to be honest with you I have not had any thing as of yet to bother me with the InterStim Implant ..
I am able to do every thing I did before ..
Mind you the only thing I do worry about is falling on my back or hitting that area as for one thing it would hurt and that is the only thing that I have ever worry about all these years ...
I some time forget I even have the InterStim too ..

It is just the first two or three weeks after surgery that you have to be careful.
I would not be lifting any heavy stuff until a month or so later ..

I am able to exercise and swim..

[jen74]

Hi Tracy99.
I hope all goes well and the interstim will help you. Did you start having the retention issues after the hysterectomy?
Jen

[tacy99]

Jen I had some retention before the hyst. I also had frequency and pain which the GYN thought was from a fist sized fibroid pushing against my bladder.

I woke up from the abdominal hyst. and the first thing that I felt was a tremendous burning in my clitoris. I thought how weird is that?? I attributed it to the catheter and surgery. It lasted and lasted. A month later the GYN said to do Monistat. Tried all kinds of those, creams. Nothing helped and I was still have all the same urinary symptoms.

Finally me GP dx vulvodynia. That was over two yrs. ago. I have a life-long history of urinary issues. My PT believes my pudental nerve was disrupted during the surgery.

If I don't have the catheter in I pee 40+ times a day and by the end of the day have a distended bladder full of urine. Self-cathing was fine until the urethra spasms would kick in with the catheter in there. Urine would stop coming out the catheter and then a lot of pain and urine and blood would start squirting out around the catheter. Eventually the catheter had to be pulled out and tissue from my urethra would be torn when the little drainage holes came by. When I had a catheter in my urethra the spasms would stop the flow of urine. OUCH So the supra-pubic cath is better in a lot of ways.

I really appreciate the feedback.

[jen74]

Wow tacy,
I am sorry you are going through so much. I think the suprapubic cath does sound alot better. Is that what you have now, and do they think this is what is causing all the infections? Do they have you on a low dose antibiotic daily?

I also feel like I have urine left in my bladder after I pee alot of times. I can pee, and get out like 4 to 5 ounces and not ten minutes later I still feel I have to pee and can get a little more out. It is very annoying. It gets way worse when I have my period also( which I have now).

I pray this interstim will help you. Big Hugs to you.
Jen

[patricia1]

I am sure the doctor told you this about horse back simply for the fact that should you fall you take a chance with the leads moving. Also riding a back. But you can fall from just walking. Mine moved from a car accident. I dont horse back ride, but when I still had mine I rode bike and what have you. And like Debbie said you become more aware of the behind issue and and not wanting to move the leads. This surgery is a chance. The chance being that something might move the leads, then again maybe not. But even the slightest movement of the leads can cause the thing to not work right. This is one reason the is so much controv. with some on here. Those that have had problems tend to disagree with having it, but I feel the better informed you are should a problem arise you are aware and you know what to look out for. They and can and will (your doctor or nurse) tell you at times that things you know are not right with the InterStim are.

[tacy99]

[QUOTE=jen74;322173]Wow tacy,
I am sorry you are going through so much. I think the suprapubic cath does sound alot better. Is that what you have now, and do they think this is what is causing all the infections? Do they have you on a low dose antibiotic daily?

Jen I do have the suprapubic catheter in now and with any indwelling catheter your odds of infection increase the longer you have it in. I am taking a low dose antibiotic daily. The recent antibiotic overload is causing a lot of vular irritation. I really hope it's not turning into a yeast infection. I don't need anymore discomfort in the area!