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  1. #1
    ICN Member kellyann's Avatar
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    Jun 2005
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    Utah
    Posts
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    Very Nervous...getting trial tomorrow.....

    Hello all! Hope you are all having a good day. I'm pacing the floors and crawling the walls....the trial is tomorrow. I am putting too much hope into this I think. I am counting on this as my answer. I am sooo tired of not sleeping because I have to pee every 20-30 minutes. It seems as though it is even more often during the day!! I am tired of not feeling good enough to play with the kids, and just live life normally! I know, these are bery common complaints I'm just nervous. I know everything will be fine and I am so ready for this to finally happen. I just wish it was all over and I could jump on here and say ":woohoo: , I'm feeling great!" Anyway...

    What kind of pain and discomfort should I expect with the trial? Just at the site? I read I should go stock up on gause pads and saline? Is that right? Anything else? Also, can I lay on my back afterwards?

    Thank ya, thank ya....
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

  2. #2
    IC Friend graceimnot2096's Avatar
    Join Date
    May 2006
    Location
    kansas city missouri
    Posts
    58
    Kelly,
    I got my interstim 3 years ago and it wasn't too bad. The trial was kind of rough but nothing that you can;t handle. My doc didn't tell me about the trial part of this, I think he knew that I wouldn't do it if I had known. You know the vanity thing.You need to get the big knee size bandaids to hold the wires in place because the slightest pull is interesting to say the least. The wires also get tangled up if you don't keep the base of them fastened down. Just keep in mind that this part is only temporary, and you will do fine.
    One of the biggest problems I had was the placement of the battery unit. Originally it was in my buttock, since then I have had it relocated to the small of my back and it is alot better. Until then I couldn't lay on my back,sit back in a chair or wear some kinds of clothes. Dig out youir skirts for awhile, they seem to be the most comfortable. I wear alot of skirts and dresses, everybody thinks I'm dressing up when in reallity, I'm more comfortable.
    Don't worry about putting too much hope in any kind of treatment. Hope is really all that we have as we search for new treatments that will work, even if it is only for a little while. Sometimes I turn my unit off for a little while to see if it is really working, I find out that it is really quick.It doesn't take care of all of my pain, I still have to take the pain meds fairly regular but every time I turn my unit off I realize that it would be alot worse if I didn't have it.
    It is okay to be nervous about any surgery, not knowing what to expect, but from what you have said you have 5 terrific guys to help you through this and all the other stuff that you go through with this disease. You are very lucky to have them. I don't know what I would do without the support of my family, and all of the people here.
    I went to work the day after they started my trial, it wasn't that bad. I know that you will do well with it too. Feel free to pm me or send me an e-mail if you need anything, graceimnot2096@yahoo.com.
    Grace

    Of all the things I've lost, I miss my mind the most!

    ic diagnosed july 2002
    chronic sinusitis diagnosed april 2006
    common variable immunodifciency diagnosed July2006
    adheasions disease diagnosed October 1990
    Asthma forever
    allergies forever
    insomnia forever
    fibromyalgia diagnosed Feb 1994
    interstim implant Nov 2003
    depression and anxiety diagnosed 1992
    pfd diagnosed 1995
    glaucoma diagnose 2007

    meds:
    remeron
    trazadone
    ativan
    prosed ds
    allegra
    hydrocodone
    naselcort
    ditropan
    hydroxzine
    lisinopril-hctz
    estrogen
    retoril

  3. #3
    ICN Member Briza's Avatar
    Join Date
    Dec 2004
    Posts
    6,363
    Hi Kell
    I hope all goes well for you tomorrow and that this will help you and give you some well-deserved relief. I'll keep you in my prayers. Email me if you need anything.
    In remission since Aug 2009!
    New to IC? read this--IC Treatment and Diagnostic Guidelines--American Urological Association
    http://interstitial-cystitis-diet.bl...nosis-and.html
    *** http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
    Treatments that helped my IC,VV,& PFD symptoms: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water

  4. #4
    ICN Member patricia1's Avatar
    Join Date
    Mar 2005
    Location
    Louisiana
    Posts
    2,132
    It is hard to remember my trial it was 5 yrs ago. But I do remember that it is not to bad. While you can go to work, I would suggest taking it easy as you dont want the wires to come out. Also you can shower, but I would stand as far back as I could and not get the area wet. I was able to wash my hair with hubbys help. The pain not to bad. I was sent home with a antibotic and pain med scrip. For me when I woke up from the trial sedation I could tell right away it worked, because for the first time in yrs I did not have that gotta go feeling. It also cut my 40+x day/night potty trips to around half that so that was great also.

    I hope this helps you and you find the results you are hoping for.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

  5. #5
    ICN Member kellyann's Avatar
    Join Date
    Jun 2005
    Location
    Utah
    Posts
    87
    Patricia,
    Thanks for the info. I don't work anymore, well outside of the home that is
    I am going to bandage the wires so there is less movement. Hopefully that works. I'm worried about laying down and sitting with the pillows propped ya know. More with the permanent than the trial, that is if all goes well. I am praying it does as the peeing every 20-30 minutes HAS to stop. My kids are tired of having to find the bathroom first thing everytime we go somewhere! Poor buggars!
    Were you out during your trial? I thought you needed to be awake so you can tell them where it feels the best?
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

  6. #6
    ICN Member patricia1's Avatar
    Join Date
    Mar 2005
    Location
    Louisiana
    Posts
    2,132
    I was in like a twilight sleep. Enough that I dont remember anything, but not enough to where they could not wake me and ask questions about where I felt it and so forth. The did this for my trial, then when I had the revision done last year and the reimplant they did the same then...Good luck.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

  7. #7
    ICN Member kellyann's Avatar
    Join Date
    Jun 2005
    Location
    Utah
    Posts
    87
    Well the trial went well. I am having a hard time getting comfy, but I am excited. The last time I went to the bathroom was 1:45!! I didn't realize you could see or feel results this quick. As far as the urgency and frequency goes anyway....
    IF things continue then the perm. Stim goes in on the 20th, next Thurs. Keeping my fingers crossed!!
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

  8. #8
    ICN Member Briza's Avatar
    Join Date
    Dec 2004
    Posts
    6,363
    Kell
    Glad to hear things went well and that you're already seeing a reduction in your f & u.
    In remission since Aug 2009!
    New to IC? read this--IC Treatment and Diagnostic Guidelines--American Urological Association
    http://interstitial-cystitis-diet.bl...nosis-and.html
    *** http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
    Treatments that helped my IC,VV,& PFD symptoms: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water

  9. #9
    No longer active
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    Jan 2003
    Posts
    5,623
    Glad things are going well. Mine is 18 months old and still my best friend

  10. #10
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    Jan 2003
    Posts
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    Hey Kell,

    I sent you a funny coinkydic.photo to your email..

  11. #11
    ICN Member kellyann's Avatar
    Join Date
    Jun 2005
    Location
    Utah
    Posts
    87
    omg!!!! They really are twins
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

  12. #12
    ICN Member
    Join Date
    Nov 2005
    Location
    Fort Worth, TX
    Posts
    53
    yay for good results! i just got mine in thursday. it has been wonderful, though I am quite uncomfortable too. i have to have the temporary in for a month before my doc will put the permanent in. sad day. i wish it was only a week. good luck with everything! i went 4.5 hours without going today!! yay.

    cheers!

  13. #13
    ICN Member kellyann's Avatar
    Join Date
    Jun 2005
    Location
    Utah
    Posts
    87
    I also went four hours without peeing!! I dont think I have ever done that in my life. I got a tip from Leslie, she used one of those squishy bead pillows behind her back to get comfy. Well I borrowed my mom's and it did help. Hubby is out buying one for me right now. Give it a try if you can. A MONTH?? I'm so sorry hun! That doesn't seem right or fair that you have to wait that long. Why so long? If it's working then why not sooner? I can see if you were/are hesitant, but hhmmmm.
    My perm. goes in Thurs. I can't wait! Keep me posted on how you're doing. Take care,
    Kell
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

  14. #14
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    Join Date
    Jan 2003
    Posts
    5,623
    Kell,

    Glad the pillow help.

  15. #15
    ICN Member kellyann's Avatar
    Join Date
    Jun 2005
    Location
    Utah
    Posts
    87
    Me too. I hope it works just as good Thurs. when I get the implant. I wanted to ask you...how big is the incision where they place the Stim? I've heard a few answers and I forgot to ask my rep when he called.
    KellyAnn......Kell for short

    Official diagnosis of IC- 1994
    I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
    Interstim Implant 2006

    Early stages of cervical cancer - 1992 caught in time Thank God!

    Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

    Osteopenia(sp), beginning stage of Osteo. -2003
    Fibromyalgia - 2003
    Migraines - lifelong

    I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

    Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

    www.shanekellyandtheboyz.com
    try not to skip the intro it's great!

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