The next few weeks you will get to go through my journey of “InterStim” or Sacral Nerve Stimulation surgery.
I have had bladder issues my whole life and this use to be embarrassing for me to talk about I no longer feel embarrassed and want to lead you through my journey so others have a chance to maybe have some questions answered.
Background:
I basically wet the bed until I was 12 years old. Did it once at my friends house at age 11 and that was horrifying. I went through suppositories, drugs, you name it, nothing worked. I eventually learned to get up 1-3 times a night to not let this happen.
I have always had trouble with incontinence, and after I had kids it head about 10 fold. I have always had an over active bladder as well, even when I was young I would go to the bathroom it least once an hour, sometimes more.
Now that I have had kids, if I drink anything at all I go every 15-20 minutes. Some days it is in large amounts each time and others, I just feel like it is a lot but when I go it is not so much.
If I jump around and dance I pretty much wet myself on the spot.
I wear pads around the clock but this can be very uncomfortable as when I wear it for too many days in a row it makes me sore and that does not go away quickly.
It has been an uphill climb and tiring living like this.
What I have done so far:
I have been in and out of the doctor for years and the last year I have been on every over active bladder on the market. The last one (Enablex 15mg) is costing me $40 per month as there is no generic version, and that is with insurance coverage!
It has helped with the incontinence drastically but not at all with the overactive bladder. The smaller dose between 5mg-10mg of other medications did not help at all and there are too many to mention that I have tried.
The last resort for my doctor is this InterStim surgery and it is in 2 parts. We are proceeding with this at 6am tomorrow morning.
Part 1:
Hook up the leads near my sacral nerve (near the tailbone). They will then attach a wire to the lead and this wire will then exit out of my lower back (maybe upper buttock). I will go home like this (with the wire sticking out) and the battery pack hooked up to the outside of my body. This allows electrical impulses to the sacral nerve in hope that the nerve and brain will start communicating properly and thus limit the times I have to use the bathroom
This part kind of makes me a bit uneasy. I don’t really want this wire and battery pack on the outside of my body for a week, but I guess won’t know until I try.
Part 2:
Only if part 1 is successful, will we do part 2. If no success (not 50% better then before) then we just take it out on part 2. If there is at least a 50% improvement then we do the actual step 2 which is inserting the battery pack underneath my skin.
It is at this stage that I will have a “bladder pacemaker” to show off.
Both steps are done in outpatient surgery but require me to be put out totally. I am sure there will be tenderness and soreness, but will not know exactly how much until tomorrow and the next few weeks.
Will keep you posted!
View Comments (7)
Good luck with your procedure. It must be difficult to live with that condition. I hope it works for you!!
I have a friend who did something similar to address her back pain and it was successful. I hope you have similar great results.
Best wishes for a speedy recovery.
I just read through the past few days of your journey. I've never heard of this. Would the pack stay under your skin permanently, or just for a while?
I have overactive bladder too; it's been really bad since having the twins. I've been on a new med for a month now.
I hope your surgery does the trick for you. It's frustrating!
Yes it stays under my skin in my hip permanently. I could tell within about 20-30 minutes of turning it off that I would have OAB back and leakage issues. It definitely has hepled me.
I tried all the meds, I hope you find some sort of comfort with your process. I hate taking meds especially over extended periods of time so I was looking for other options. In the end the meds were not doing the job good enough anyway so it was inevitible to do something more.
Feel free to contact me at anytime if I have not posted about it for awhile and I will answer any questions you may have.
Hi Tawna,
I hope things are going well for you. I had no idea what kind of surgery you had until I started looking at the posts.
I had a really bad problem a couple of years ago. I told my husband he was going to be changing my diapers...... then I stopped all the sugar. I can't believe what a difference it made for me.
I am sure sugar is not your problem, but you are right... it is embarassing. Talk to you later
Terry:
Ya, I don't eat sugar at allr eally. Not a hug fan (except for 2-3 days a month) ha ha. Anyway, I did read a lot about people hrelieveing symptoms after taking sugar out of their diet. yes I wish mine was that easy but mine is abnormal as I have been suffering from this for as along as I can remember. Glad yours was treated without surgery!
I have had much the same story and have had the interstim for 2 years. Mine was for retention and it has been helpful. I do have some issues with it. My stimulator 'falls' out of it's pocket when I sit or lay down. The only way to fix it is another surgery. Having it re-adjusted is a pain in the a--. My Gyne says it is a propriarty divice and he cannot adjust it. I have to return to my Uro_GYNE $$$ for adjustments. I have found that Metronic is very helpful before the installation... but worthless after. Yes, it has helped my condition... but the frustration surrounding the devise is overwelming. When it comes right down to it... it's all about Money... How much can Metronic make... How many times will you pay to have it re-adjusted before you just give up and turn it off. For the doctors, it's a gift that keeps on giving... I hope you have better luck than me