Interstim coming out!!

[akc]

I went to a new doctor yesterday who was very straight forward. He said I should not have the Interstim for pain, and since I have had four surgeries trying to fix it, there is nothing else to do. SO, next week, it is going to be removed. I have to spend one night in the hospital.

He also said that I need to get a new frame of mind. I need to stop thinking what can cure me and stop this pain, to how can I manage this and get on with my life. He said that I have had every possible treatment in the past and I just need to accept this is my life. I told him that is a lot easier said than done. That my life is miserable. So, he is just taking the interstim out. That's it. He said to go to a pain clinic(which I am already scheduled) and to have internal physical therapy. How weird is that?!?!

I just wish I could make a doctor understand that this pain in unbearable. It seems like talking to doctors and making them understand the pain is just like.. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

I really don't think I can take much more... frown.gif

[ICNDonna]

I'm really sorry you will have to have another surgery, but if it has to be --- it has to be.

The physical therapy your doctor mentioned is extremely helpful to a lot of people --- if you have pelvic floor dysfunction (PFD) it can be a real benefit.

Sending healing thoughts,
Donna

[Teri]

Please, what ever you do, don't give up your search for the dr who WILL treat your pain and make you comfortable. I almost did and had I, I wouldn't have the fantastic one I have now.

Thank you for posting about the interstim in regard to pain....so many people are being mislead that this surgery will take away their pain and they are devestated when they learn they were lied too.....it's just so hard to watch someone go thru that....don't let your experience be a waste....share here. help others with what you have been thru.

Having your pain manageable does make it easier to get on with your life.....so search and search until you find the right dr....trust that he/she is there...you WILL be lead to the right person.

My heart breaks for you but I also know that with the proper pain meds, you can have a part of a day where you will eable to be productive again and it's SO great to get that back.

tona of <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[icnmgrjill]

AKC... I think that Donna and Teri said it soo well!

I, too, was in agonizing pain to the point that I contemplated the unthinkable... and it wasn't until I found a doctor who really helped me.. that I really DID get better. I rarely have pain now.

Please don't give up. I'll be happy to spend as much time as you need by phone to help you find another pain doc.. if this one doesn't work out. Sending prayers and STRENGTH your way!

Jill

[akc]

Thanks to everyone for giving me uplifting support!! I have been ready to give up, but reading your messages gives me the strength to go on and not give up!! Just knowing that there are others out there that experience the same things is EXTREMELY helpful!! You all are my angels and an answer to prayer!! You just have no idea!! I just need to keep praying that my next doctor will be the one to listen to me!!

Thanks again for everything to all of you who have replied! I can never tell you how much you are helping me! I too have thought of doing the unthinkable because I am so miserable!! You are saving me!! <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[louise]

AKC,

I can only add a small bit to the wonderful support you have already been given. A number of years ago I was in my first car accident which among other problems caused a fracture of my pubic bone (osteitis pubis). This was very painful as any movement would make it worse. After various treatments a prominent orthopedic surgeon said he thought if he put plates and screws in my pelvis to stabilize my pubic bone it could help the pain. I went ahead with the surgery as I was at my wit's end as to what else to do. The problem is that I have severe osteoporosis (from age 34) so the doctor had to put twice the amount of titanium into my pelvis to fuse the pubic bone. The point of my story is that after about a year I was going crazy with this "hardware" in my pelvis. Now each and every movement was very painful and I just knew I could not live the rest of my life with these plates and screws in my body.

The doctor reluctantly agreed to do the surgery. My recovery was long and difficult but it was my choice. Even though the surgery significantly worsened my IC it was such a relief mentally to have those pieces of metal out of my body. My urologist wants me to consider having the Interstim test but I have told him after what I went through with the above experience I do not want any more foreign objects surgically implanted in my body. Since my main IC symptom is pain I was not considering it anyway as I have heard and read so often that it really isn't helpful for pain.

I guess what I am getting to is that I hope for you once you have the surgery to remove the Interstim you will find you have less pain. At least I sincerely wish that is the case for you. It sounds as if you have suffered enough already.

Re pain control have you tried the B & O suppositories? I was given one after my last C & H along with a dose of morphine and it made my pain much less than with my previous procedures. I used them for a while after but have gradually stopped using them of my own choice due to experiencing some side effects. But perhaps they would afford you some comfort after this upcoming surgery. Good luck and I hope all goes well.

Louise

[Miki]

I am sorry to hear of your advancing pain. I am in a flare myself.
I was given morphine to try. I had never used it before. So, what could it hurt.
Well, it did. It caused my urethea to spasm even more. I was in more pain after taking the morphine, than I was in my flare! I went back to Lortab for breakthrough pain. At least that lets me Pee!
I use a fentanyl patch (duragestic) everyday, but sometimes I get these horrible flares, and just have to wait till my body decides it is time to relax and stop putting me through this horror.

Newbie to group:
Miki

[fireflicker285]

I know what you mean. I have a doctor that thinks that there is nothing wrong with my bladder that Pyridium won't cure. it is very frustrating. Don't give up looking for a doctor that takes you seriously. Good Luck to you.

[tigger_gal]

Akc,
I am glad that your new doctor is straight forward with you.. You should never have been given an interstim for pain... I am so sorry your doctor mis lead you, he was so wrong....
please keep us posted on how your removal went.. and btw.. see what you can do for malpractice! he put a dvice in your body representing it as a pain reliever.. and its not...
hugs
Brat

[mayray518]

"Get on with your life and manage the pain" please. Sounds insensitive to me. How can you get on with your life if you cant leave the house. I couldnt for years. No one can ever understand the pain someone else is in unless they go through it. They should be thinking "There but the grace of God go I."

[tigger_gal]

" No one can ever understand the pain someone else is in unless they go through it. ."

Mayray,
you sure said a mouth full, in just one sentence... No one knows how you feel.... and no one should judge your thoughts on how you express them.. Especially a doctor.
Brat

[Teri]

My husband has prostate cancer and will be having it removed on Nov 9. The uro we have chosen to do the surgery does alot of interstims and we talked about my failed attempt and he asked me how I was dealing with it. I told him that I have come to peace with it because what other choice do I have and I consider myself "only" a pain patient now and on most days okay with that.
Well, watching my pillow top matress cave in more and more everyday because of all the time I spend in it is turning into a kick in the ass. We have had so many beautiful summer days and I have spent the summer basically in bed.......so who am I kidding that I'm making peace with it.
I know that I will be responsible for my husband for at least 2 weeks after his surgery and I am scared to death and praying like crazy that god gives me the physical strength to do this. My husband has been so great taking care of me for the last 5 years and now I owe HIM and I pray god will let it happen.
The one thing that I NEVER felt after I had my implant taken out was a failure because I KNEW I didn't fail. The device just wasn't meant for my body. I no longer jump from uro to uro looking for the pot of gold at the end of the rainbow. I have a uro who is right on top of all the new treatments so while we are waiting, he's doing his best to keep me comfortable enough to make it thru the days.....I may not accomplish a damn thing but at least I am making it thru the days and nights.
DAMN those dr's that tell patients the device is for pain. OR for them even saying it 'might.' When I had my original surgery I was told that the only way to tell was after the surgery but I should go into it believing it would not. I think that if more patients would be given that little bit of advice it could save alot of extra physical and emotional pain.

wishing you all the very very best

[Katrina]

AKC, I am so sorry you have to have another surgery. I hope that things with your surgery and you new treatment goes a lot better for you. Although there is some accepting that needs to happen with IC that should never mean we give up on the fight to get better. As many have told you even when we feel like giving up .....finding the answer is still possible. I hope you get the doc and treatment you need.
:kiss:

[tigger_gal]

((((((((((Teri)))))))))))
you said it well...... I am sorry about your hubby..... you know you can email me any time....
Brat

[Miki]

I have been in a flare for the past couple of weeks. Plus other things that have made me feel the same way as you. The mattress is really getting lower and lower where my body is.

Perhaps: trying to get a nurse to help him, if you can't. There are visiting nurse services, and your doctor might be able to hook you up with one.
IF they feel the main recouperation period will be 2 weeks, if you have good insurance, and or/ have extra money socked away, it might be the best thing to do. If you are sick and he is sick, I don't know how well you will do with nursing him back to health.
I would think that you could get something from the kitchen a few times a day. Stock up on/or do it via on line, groceries, and do microwave dishes.
Don't do the whole dinner etc routine.

Enjoy the time that you both are feeling miserable in bed Together.

I have found that when I am feeling so bad that I don't get out of bed, (except to pee and eat...which I bring back to bed with me)
And then my husband gets home from work tired, and lays down with me, it is a really warm feeling. It is like even though we are both feeling down, it is nice to have another person in bed with out at that time.

Check into the visiting nurses,
check into Amazon.com, Griestides food. (they choose what you order and ship it to you.)

Good luck, and hope you will be ok.
There are ways to get around things, and maybe a different view point will help.

Best wishes
Miki :idea:

[Miki]

Mayray,
you sure said a mouth full, in just one sentence... No one knows how you feel.... and no one should judge your thoughts on how you express them.. Especially a doctor.
Brat

Hey not even a doctor. I have had IC/or whatever each different URO calls it for 20+yrs.
My husband, in the first 5 yrs. was really trying to be nice, and did so by ignoring me when I felt bad. I would have urethial dilations every 6 weeks, and would be in horrid pain for at least 5 days. (on major meds etc)
He pretended he understood my pain, but would be really distant and nasty when I was in really bad pain.

One day he was feeling weird, and he had burning and a heaviness in his lower abdomin. He figured he would go to the URO I was seeing to check what was wrong.
He found out he had a really bad bladder infection.
When he came home, he described how he almost fainted when the doctor did a prostate palpatation.
I laughed and said, well darling, what do you think I feel like everyday, and especially when they do the dilations with a "massage" to get the puss expressed out of the uretheal glands.

He looked at me, I could see the light go on, and he told me how sorry he was for how he acted etc. He never knew what my pain could be like.

From that time on, if he objects to my *****ing about the pain, I remind him of how he felt the 2 times he had a UTI.

Miki :dance:

[tigger_gal]

(((((((((miki))))))))))
some times I wish my hubby knew exactly what it felt like.. looks like yours got on hands experience.....
Brat

[Miki]

Yes, he did, and it still was/is difficult for him.
The sex thing, I think has been the hardest.
We had problems before I got IC, then it all reversed when I got IC.
I could not go for long, and he was on meds that let him go longer.
It was really frustrating for him and I.

Now, since we are old *arts, it still matters, but with all the antidepressants, it seems like neither of us really has any desire for sex any longer.

I wonder: :rolleyes: If we need a really good way to keep our teens from having sex too soon, put them on SRRI's. That will take care of the desire, and the ability to do anything about the desire. But they will not have Teen age angst as much as before!
LOL :hmm:

Ok, weird concept.

Miki

PS: My flare is almost over. I have backed off of my meds, and finally feel a good deal better. Instead of an 8 or so, I have spent 2 days going down to where I am about a 3 or so. At least today.
But last night I had really bad rectial bleeding. It scared me for a little while but it stopped after about 3 bouts of it.

Doctor said if it continued, I should let him know.
So far I am ok, cross fingers. and pray that it will not be back.

Miki

[qtgirl5678]

Hello,
This is my first time posting but i thought i found a good place to post at...Even though i am sort of a newbie to IC i feel like its been years since i was diagnosed! Anyway, i've been through alot of the therapys out there. Just recently i had the interstim put in. Let's see that was about 6 months ago. And like most of the posts that i've read, i too was told that it would help with the pain. And for about a month i did notice some changes. It definately helped with frequency and urgency, and the pain decreased alittle. But recently its been horrible. Its worse now than it was even before i got the interstim. I really would not like to have another surgery to remove it, too much hassle, since its hard for me to drive for 20 mins, i cant imagine driving all that way and go through another serious surgery! Anyway i'm getting off track.... I've come to the point where i feel helpless. My doctor is ignoring my calls and when i insist to see him, he sets me up with one of his nurses. I know i shouldn't really be complaining some people have it worse off than me, but i feel so lost. I dont even know of any other options. I've done the instillations (which i would rather not go through again), and the Elmiron (did no good) and of course the interstim. My main syptom is pain, its really inhabilitating! My life has ceased because of it. I'm lost and i was wondering what's after the interstim? Is there really any more hope? Thanks for listening!

qtgirl

[janetm]

I suggest pain management. Maybe you could check the S.E. U.S. section of this board and see if anybody could recommend a pain doc. I wish I had tried that before the Interstim.

[mayray518]

Miki, I am laughing about your thoughts on giving teens SSRis to lower sexual desire. At that age I dont think anything can lower it (ha). When I first got IC my boss, who was supportive because I had been with him for so long, still continually asked what the pain was like and would say "you have to deal with the cards God gives out, etc." Because men rarely get bladder infections I knew there was no way he could go through the pain. Well low and behold he came down with a bladder infection and was actually hospitalized with tubal drip antibiotics. He missed about a week of work, which he never did, and he said he had never been through such pain in his life. I told him "Well imagine being ignored and not getting any relief from that pain year after year." He never again asked me what the pain was like.

[Miki]

Sometimes these little things mean so much!
I is really hard for a man understand the pain, when he has never experienced a full on Infection.

It is amazing the turn around men will make when they experiencd just a little of what we go thorugh.

miki

[tigger_gal]

Miki,
Mine is like yours... ignores me when in pain.. thinks that if he don't say anything that its all ok.....
ok heres last nights topic.... were in bed... he gets up to go... and a few mins later gets up and goes. and hour later gets up and goes. (never mind the 3 cups of coffee he drank before bed and the pepsi) . he says to me..... I keep having to get up and go.. I don't get it.. I go and my bladder still feels full.... I smile and say I'm sorry honey. welcome to my world... :lmao: as I roll back over and went to sleep.....
hugs
Brat

[Myli]

LOL Don't you love it when you get a chance to do a reversal on your mate. Luckily, this was just his own fault for drinking so much before bedtime. Sometimes I wish members of political/medical bodies had to go through what every day people do. But problems perceived as being female in nature, despite facts to the contrary, have historically been neglected as being all in our heads.

Hmm. If this pain were physically in my head, it would be much easier to treat Anyway, that is quite cute!

/hugs
Myli

[Miki]

Good one~
3 cups of coffee! Wow, that is really a lot.
I can't even drink coffee any longer. It too is a diet no-no. for me.

I used to love that smell in the Am. I only had one cup a day, and it was such a nice routine.
OR if I went out for a nice dinner, I might have a cup of coffee.

Love it..................but it is another one of the things that gets pulled away from you when you have chronic disease.
This disease, and the others I have, changed my life so much. I know they did so for the rest of us too.
I would be nice if other people could understand by some sort of strange new device that would cause them to try to function all day and night with the same symptoms. OH and then, put them into a flare for one day of the week walking in our shoes.~!

Miki

[Myli]

Call it insta empathy, done through hypnosis that convinces them they have IC and are in a one week treatment trial program that hasn't helped much with the urgency/frequency/low level pain. Then, it gets worse and they are in a flare for two days. All done under hypnosis in the course of a half day seminar. Make it a mandatory requirement for the senior year to get out of high school, so they learn young... Then send them through the pregnancy/parenthood course.... Also mandatory...

=D I like it!!

/hugs
Myli

[Miki]

myli
That is pretty funny.
I think it would be a really good thing for the kids.
But remember, we women would have to go through having hormones and spontanious erections. ETC. I am not sure I could be that empathetic.
But then, the girls are pretty out there at that age also.
:dogrun: