Latest Blog Article: Why The IC Network Walked Away From Facebook
Page 5 of 5 FirstFirst ... 45
Results 61 to 67 of 67
  1. #61
    ICN Member KristinKathryn's Avatar
    Join Date
    Aug 2012
    Location
    Wisconsin
    Posts
    349
    Advertisement :
    I am so happy for you Chris! Sounds like it is working!!!
    Diagnosed with IC in May 2011

    Current Medications:
    Elmiron 400 mg daily
    Imipramine 75 mg daily

  2. #62
    ICN Member
    Join Date
    Aug 2012
    Location
    Georgia
    Posts
    64
    Good luck with continued success with your interstim.
    i have one as well, and may be revised in the net few months. i have had for 6 yrs.
    Also i know a women, she is also a member here and swears by the interstim, before the implant she had severe retention, which caused urine to back up into kidneys, which if left like that she would die. but since the implant she has been able to urinate with no problem. so we are each different in our needs for an interstim. take care...sheryl

  3. #63
    ICN Member
    Join Date
    Jun 2012
    Posts
    71

    Re: Is Interstim for pain control??

    I realize this is an old thread, but I just wanted to say thank you for posting this. My OB/GYN confirmed my IC and from there I found what I thought was a good urologist. My first appointment this man spoke with me for approximately five minutes and immediately said the Interstim is the only thing that would help me, told me he would get me literature and be right back. Twenty minutes later a nurse came in handed me a phamphlet and a paper scheduling the trial implant. Needless to say, I left and never looked back at him. I'm glad I went with my gut. However, I do not want to imply nothing good comes from the Interstim. I just felt it wasn't for me, at least not that quickly from someone who didn't take the time to talk to me, get to know me and my symptoms and history.
    April 2012 -diagnosed with IC, potassium sensitivity test
    May 2012 - potassium sensitivity test, hydro/cysto/biopsy, bladder scans, ct scans, and urodynamics test. Started IC diet.
    June 2012 - diagnosed with Pelvic Floor Dysfunction and Vulvodynia, irritable bowel syndrome. Started low oxalate diet.
    July 2012 - diagnosed with Gerd/Pud, seasonal allergies, migraines, chronic sinusitis, TMJ, chronic ear infections, deviated septum, fibromyalgia and mild hearing loss. Sept 2012 - started Elmiron again, Uribel and Elavil
    Oct 2012 - Stopped the Elavil. Started Neurontin, Atarax and Vaginal Valium
    Nov 2012 - Started taking Cymbalta for fibromyalgia, Allergies of apples, turkey, beef, chicken, potatoes, peanuts, celery, ginger, tuna, green beans and vanilla. Also, dust mites, mold, pollen, trees and ragweed.
    Dec 2012 - migraines confirmed, prescribed Maxalt. Vitamin D deficient, Ergocalciferol weekly. Neurontin, Atarax and Vaginal Valium doubled. Claratin for allergies. Tramadol, Flexeril, and Dextroamphetamin
    Mar 2013 - diagnosed Celiac Disease - started gluten-free diet. B12 injections and Lunesta.
    Jun 2013 - cysto/hydro performed. Hunner's ulcers found.
    May 2014 - uterine fibroids. New Allergies to Morphine, Hydrocodone, Percocet, Codeine and hyoscyamine.

  4. #64
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    42,123

    Re: Is Interstim for pain control??

    Quote Originally Posted by Kecia View Post
    I realize this is an old thread, but I just wanted to say thank you for posting this. My OB/GYN confirmed my IC and from there I found what I thought was a good urologist. My first appointment this man spoke with me for approximately five minutes and immediately said the Interstim is the only thing that would help me, told me he would get me literature and be right back. Twenty minutes later a nurse came in handed me a phamphlet and a paper scheduling the trial implant. Needless to say, I left and never looked back at him. I'm glad I went with my gut. However, I do not want to imply nothing good comes from the Interstim. I just felt it wasn't for me, at least not that quickly from someone who didn't take the time to talk to me, get to know me and my symptoms and history.
    Thank you for sharing your experience.

    Hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  5. #65
    ICN Member
    Join Date
    Feb 2015
    Location
    Wisconsin
    Posts
    14

    Re: Is Interstim for pain control??

    I have the interstim as well. I have both ends of the spectrum. Either going every five minutes or not at all. Can't seem to find the right setting for me. If anything when I have it on it contracts my muscles thus not allowing me to go but I still have the spasms. Glad to hear it worked for you.

  6. #66
    ICN Member
    Join Date
    Jan 2015
    Posts
    6

    Re: Is Interstim for pain control??

    Again, sorry for posting to such an old thread but I just wanted to ask some questions and share my recent experience. I have been diagnosed with IC for about 4 years by my OBGYN who at that time believed in the potassium test. Since then I have been on elmiron 2 different times, and Amitripillne, also DMSO instillations which did not work for me. I found a new urologist who currently has me on vaginal valium 3 times daily, zanaflex 2 times daily, another trial of elmiron, and Enablex. I have tried myrbetriq but caused severe retention and the Enablex is starting to do the same. I find the most relief when I take my vaginal valium and pain meds when I have a flare (not daily). During my cysto/hydro my urologist said my bladder didn't look "that bad" and since doesn't believe my pain is as bad as is it is. She "reluctantly" has referred me to a pain clinic but said I might not get in because I'm only 26. I have a bachelors degree and I am a case manager so me missing work from this debilitating pain is eventually going to catch up with me. She keeps pushing me to have the interstim, and keeps telling me it will help with my pain. I already am reluctant to have the surgery due to the fact my frequency and urgency has been cut in half from taking valium and zanaflex. I went from 20-30 times a day to now 10-15 which is a huge deal for me. I feel like she just wants to profit from the surgery and has flat out told me she thinks I'm pill seeking. I just know what works for my body. I'm in between a rock and a hard place here...I don't want to have the surgery since my frequency is controlled, but is worried about wether or not it will help with my bladder and pelvic pain....anyone have any suggestions? So sorry for the long post. I just really need some guidance from someone that has gone through this.

  7. #67
    ICN Member
    Join Date
    Feb 2007
    Location
    I live in Chicago IL
    Posts
    3,745

    Re: Is Interstim for pain control??

    Interstim does Not work for pain. a couple years back my Urologist referred me to a doctor who did Interstims, well he did the surgery to put them in. He told me right off the bat that interstim is Not recommended for those who have pain as their main issue. It does not help with pain, it works on urgency and frequency. I just saw another urogyne not too long ago just to see what other things they have come up with since I last saw a specialist( I have tried everything and am still suffering). He mentioned the Interstim as well. I told him that I was told that Interstim does not work for pain. He said, usually it does not but he was just throwing it out there because I have tried so many things already. I do Not feel it is wise to put myself through a surgery just to say I tried it, knowing it is not going to help me with my pain.

    That being said, I did see a pain doctor recently who offered another kind of spinal cord stimulator except it is used to treat pain. You would have to see a pain specialist as they are the ones who deal with this kind of thing, not a urologist. It may be worth looking into for you. I am thinking about it right now. I am just leery of having anything invasive done when it comes to my spinal cord. But I have not ruled it out as of yet. I mean I just would like to do more research on it and see how many people with IC bladder pain have gotten relief from it first. As for Interstim, it was proven that it did not help with pain so much though.














    Quote Originally Posted by Jjustic7 View Post
    Again, sorry for posting to such an old thread but I just wanted to ask some questions and share my recent experience. I have been diagnosed with IC for about 4 years by my OBGYN who at that time believed in the potassium test. Since then I have been on elmiron 2 different times, and Amitripillne, also DMSO instillations which did not work for me. I found a new urologist who currently has me on vaginal valium 3 times daily, zanaflex 2 times daily, another trial of elmiron, and Enablex. I have tried myrbetriq but caused severe retention and the Enablex is starting to do the same. I find the most relief when I take my vaginal valium and pain meds when I have a flare (not daily). During my cysto/hydro my urologist said my bladder didn't look "that bad" and since doesn't believe my pain is as bad as is it is. She "reluctantly" has referred me to a pain clinic but said I might not get in because I'm only 26. I have a bachelors degree and I am a case manager so me missing work from this debilitating pain is eventually going to catch up with me. She keeps pushing me to have the interstim, and keeps telling me it will help with my pain. I already am reluctant to have the surgery due to the fact my frequency and urgency has been cut in half from taking valium and zanaflex. I went from 20-30 times a day to now 10-15 which is a huge deal for me. I feel like she just wants to profit from the surgery and has flat out told me she thinks I'm pill seeking. I just know what works for my body. I'm in between a rock and a hard place here...I don't want to have the surgery since my frequency is controlled, but is worried about wether or not it will help with my bladder and pelvic pain....anyone have any suggestions? So sorry for the long post. I just really need some guidance from someone that has gone through this.

Page 5 of 5 FirstFirst ... 45

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. My experience with InterStim
    By peiti in forum Sacral Nerve Stimulation: Undergoing Trials or Surgery
    Replies: 10
    Last Post: 12-09-2005, 03:55 PM
  2. What is, and, how do they do the Interstim
    By tigger_gal in forum Sacral Nerve Stimulation: Considering it?
    Replies: 17
    Last Post: 06-15-2005, 04:06 PM
  3. Advice I got from Dr. B. concerning Interstim
    By ICLori in forum Sacral Nerve Stimulation: Considering it?
    Replies: 3
    Last Post: 11-22-2004, 02:01 PM
  4. News from Medtronics re: interstim!
    By Teri in forum Sacral Nerve Stimulation: Considering it?
    Replies: 2
    Last Post: 10-04-2001, 02:27 PM
  5. continued.....Reporting Interstim Failures to FDA
    By soccergirl in forum Sacral Nerve Stimulation: Surgical or Interstim Device Failures
    Replies: 7
    Last Post: 02-16-2001, 08:05 AM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •