Periods and Menopause and Interstim and IC and PFD

[Sandy]

Think I got enough of them up there????? I have all of them coming up with the period.
The question I have and I am sure I have read it before but... Does anyone with the Interstim in(mine being in for 6 months now) have major flares and urg/frg bloating etc about a week to ten days before their period? I did before but never this bad and am stressed that it is not going to let up. Had a large glass of milk the other day whcih really seem to set it into a major flare. Going to see my uro in two dyas as I feel there may need to be an adjustment done. I have never really felt "right" since my last adjustment. three months ago. In between that time I fell,(not on the mimplant side) and have been to see the uro, but things are getting worse., but my main question is as the above with the period thing. Like I said this is the worst one.
Sandy Sounds like a repeated statement but I am soooo tired having to pee every 1 1/2 hrs not getting much sleep

[Maureen]

Sandy,
Hi! I hope you got my email last week. I am sorry you are not doing so great. Dr. H put me back on Detrol (as needed) last week so maybe he will suggest that to you as well. Take care Maureen

[Ruth N]

I always flared that time of the month beforre interstim. After interstim that was still my flare time, but not as bad as before interstim. I had a hysterectomy 7 months ago (not because of IC) and must say that I love not having monthly IC or joint flares BUT I am not recommending a hysterectomy, just saying that you will still have hormonal flares even with interstim. But if yours are worse sounds like you need to see your interstim doctor. Good luck.

[Sandy]

Had the adjustment done yesterday and last night (all night) was the night from hell. Had to pee every 20 min. Just wondering if I drank too much water but I don't think so, had some blood show up in dip previous to the appt so taking macrobid and it was quite an adjustment. I had it so low that he could not get a reading on his computor tuner. Guess that is not good either. Twenty four hours later just starting to feel better but constipated. I could eat a whole bran field I think at this point and it does not seem to make a difference. I am finding that I can only drink small amts of water at a time not the big glass like I am used to doing. Anyone else find that or your bladder goes in to overdrive. When he tuned me it was so high I felt the sensation quite strong but left it that way for awhile and now have turned it back. Debbie, you know those eyes!!!! But I concentrated hard on the sensations yesterday as I was in a bad way and LEs was with me so Dr H spoke to him how he does the adjustments all the techy stuff I never get right(duh, because I can't concentrate lol lol) you know why....lol lol
Sandy
By the way milk is still a problem but not ice cream or maybe it is just coincidence because it is period time coming (I hope, menopause seems to be a hit and miss with it you get all the symptoms but not the results)
Had an ice cream cone yesterday and it did not seem to give me grief. Hard to really tell as I was going off my nut by the time I got home anyway.

[Maureen]

Sandy,
How are you feeling today? I had a horrible night last night. I took the detrol and then I could not pee. Oh if only doctors would listen when you tell them that. I tried detrol before and that was the results. I do not not know why he is not making any more adjustments with me. Two appointments ago he made a few adjustments and some of them I could not even feel. Other were way out in the butt check area. So he said that he would have to turn it back to the original setting and that it was the right one. I have found that I do not do well with his crank him up in flare method. Cranking it up causes my bladder to flare more. It is better in the lower volume that I can just feel it. I am surviving and my bladder is holding about 100- 110 ml (when not flaring) so that is better than before the interstim. Hope you are feeling better!

[Maureen]

Debbie, I didn't say that he wasn't listening about adjustment. He feels that this is the best setting and is satisfied with the 110ml. "That is 100% improvement after all." For some reason he made adjustments that I could not even feel. Maybe due to all the pelvic surgeries I have had (bladder lift, hysterectomy etc.) I do not know, I just thought of that.
He did re-do urodynamic tests in December but could not find any problems.

[DebbieB]

Maureen, I am glad to hear that you have improved "100%" that is great to hear!!!
I am so happy for you !!!

Debbie

[Maureen]

It is funny that a patient's 100% improvement means they are back to normal( for me a bladder capacity of 450ml. would be normal) a surgeon has his own calculations (110 ml for my bladder capacity would be 100% improvement in his literature to collegues).

[ChrisNes]

Hi, I am 46 and going in for my trial interstim implant on 08/31-12, any advice would be helpful. It is a 6 hour drive to the hospital and then spend the night in a hotel then drive 6 hours home.
I have been very sad lately, and if this interstim doesnt work for me IDK what else to do.

My name is Chris

it has been a while since i posted
FMS-
IC- with hunners ulcers, scars, shrinkage 400ml last hydro
IBS- two operations to fix posterior repairs and scar tissue 2002 and 2009
pancreatitius-
POP- in 2001-2002
Bladder tack, burch, sling 2002
2000 ovarian cyst (pair size removed) endometrosis, and fibroid removed
TAH-(with a partial bilateral) still have oves and tubes 2002
Kidney- stone 5-6 in 2010
CFS-
CPP-
Cholesterol problems- inherited
PFD 2012 PT for PFD 2012
Going to get the trial interstim 08/31/12
I think the above is everything.

Now i am trying to get my bladder sling, tack, burch fixed or redone and have my oves, endo, and scar tissue removed.

medications
fluoxetine 40mgs
lyrica 300mgs
tramadol 100mgs
elmiron 300mgs
hydroxyz 25mgs
fenofibrate 180mgs
savella50mgs
cyclobenzapr 10mgs
I dont know how to set it up so my meds and so forth show up when I post
Right now I hate my life

[KristinKathryn]

Chris:
I am going for my trial on 9/26. It will be a 10 day trial with the second surgery scheduled on 10/10. On 10/10, the device will either come out or be made permanment. I am sorry you are struggling. What are your symptoms right now? I am dealing with frequecny and urgency. My sympoms kicked in to full gear in May. I feel like I spend most of my summer in the bathroom. I am 42 and so frustrated! Right now I am on Vesicare but it makes my vision very blurry. It usally helps for a week or two. I am very nevious about the trial, but feel like I have no other choices right now. PLease keep me updated!!

[ChrisNes]

Kristin, Hi this is Chris. I go in for the trial on 8-31-12 I guess I must be worried about this cause I was really down the other day. If it works for me they put the permanent one in on 9-19-12. I started leaking in 1997 or 1998 it wasn't bad leaking but I was getting up 3 times a night to go to the bathroom. In 2002 I had a total abdominal hysterectomy with a partial bi-lateral so i still have my ovaries. At the same time I had a bladder tack, bladder burch, a urethra sling, a bladder hydro, and a pouch removed from my bowels. About a year later I started to leak ALL the time. The doctor who did the operation said it had failed. In 2009 I dared to get the bowel pouch repaired again. In 2010 I was going to get the bladder sling, tack and burch fixed but the doctor I was working with moved back to KS. So after more tests and years of leaking this doctor in Minneapolis said he thinks the interstim will work for my IC and leaking, my bowels, and it may help with some of my pain. The Dr. said that my nerves in my spine are sending the wrong message to my brain that is why i am leaking and why I have IBS. I will turn 47 this November. I will try to keep you posted and try to help where I can. If this doesnt work for me I dont know what I will do. I am very down about my bladder and bowels. I want some quality of life back and I hope this works for me. I did my pre-op here in ND the other day and I asked our rural Dr. if there would be anyone here to help me if I have problems with the device and she said No that none of them have any experience with the interstim so I will have to travel an hour to get any help that I may need. My appointment is about 5 hour drive from my home, this time my brother said we could use his place (I hate to put him out) but gas and motels are expensive and the eating out...my 10 year old daughter will be coming with us. I tried to get information from others on what to expect but I didnt get much info. My training for the device is on the 30th so I guess I wing it after that.
I wish us both luck, and I hope it works for us. Good luck to you.

[NewtoIC2012]

Keeping you in my prayers Chris!!

[KristinKathryn]

Chris:
I was told the Medtronic Rep would be available, at least by phone, to help troubleshoot issues. You won't be alone. If you are on facebook there is an Interstim Group. People going through the trial and people with the perm are free to ask any questions they want. Lots of good information.

[KristinKathryn]

Will be thinking about you tomorrow!!

[luvlabpups]

hi!
i just found this forum so am just feeling my way around hoping i don't make too many mistakes. forgive lower case and errors. i had thumb joint replacement surgery 4 weeks ago and am still in splint restricting hand movement.

i am scheduled for a trial interstim 10/3/2012. will come out on 10/5/12 and i see my urologist to discuss how trial went on 10/10/12. is that long enough to really tell if it's going to help?

i'm getting a little concerned about this whole procedure. i know it works great for a lot of people, but apparently it doesn't for others. guess you just have to decide to go forward on faith and try it out for yourself to see whether it will help you or not.

also concerned about the class action lawsuit medtronics lost due to faulty wires in their defibulators (sp?). anyone know anything about that?

i suffered with severe pelvic pain on and off for about 8 years. i would go for months with no pain, then would have flare with lots of pain, urgency and frequency. was always misdiagnosed as a uti and given antibiotics which of course did not help. i thought i was going crazy and the pain must be imaginary. i moved from maryland to florida in 2006, and was finally diagnosed with ic by my gyn in august 2011. a cytoscopy revealed 5 hunner's ulcers which my urologist removed in october 2011. the pain went away immediately.

now i am just troubled by urgency and frequency. the meds i am taking reduced frequency from going 24 times in 24 hours to 14-17 times. problem is at night when i have to get up 4-5 times so never get a good night's uninterrupted sleep. i take elmiron, sanctura and uribel.

i am thinking about cancelling the whole thing, then think i should at least do the trial. trial scares me since it seems they only numb the area and you are awake throughout the procedure. i do not like that idea. how bad is it?

would appreciate any info anyone can offer. please!


janet