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    Mothergoose
    ICN Member

  • Mothergoose
    replied
    My bladder doesn't contract, drs have no idea why. My IC specialist says he has a handful of pts with both that he can't find a reason for.

    I am not on any meds which would cause this. Lots of meds make it worse, but I don't take any of them.

    Leave a comment:

  • Shana1234
    ICN Member

  • Shana1234
    replied
    I wish I had results for retention! I had the trial years ago, before I had 2 kids. I was born with neurogenic bladder but have "only" been self-cathing since 2001. I hate having to cath every time I go to the bathroom mainly because it is embarrassing to have to carry a bag with a cath in it, but at least I am a woman and have a purse. Still, I need to get it every time I have to go. The interstim trial did NOTHING for my retention and now that I have 2 kids I'm hesitant to do another trial ever. The dr. had told me that until they find a "cure" for spinal cord patients (I am not one but the brain signals to "let go" of urine are the same I guess), that there is nothing I can do.

    Good luck to you and keep us posted!

    What caused everyone's retention?

    Leave a comment:

  • Jonsey5715
    ICN Member

  • Jonsey5715
    replied
    Klziger,
    Hey I am just reading your post...I know it was from a little while back but I am doing the trial now for retention. I get the permanent one implanted this Friday. I see that you were using catheters and couldn't be intimate with your husband... I have the exact same symptoms. The interstim trial has gotten me to where I am not using catheters. My husband and I have only been married for a year and 4 months and we haven't been intimate in 11 of those months. It has put a huge strain on our relationship. I am thrilled that you had those results and were able to be intimate with your husband. I have tried everything (hydro's, botox, trigger point injections every 2 weeks, pelvic floor pt, Valium vaginal suppositories). I pray that I have success like you. I am only 26 and would love to have a child one day...right now that seems to be only a dream. I hope you are still having those great results!!

    Leave a comment:

  • KristinKathryn
    ICN Member

  • KristinKathryn
    replied
    If you are on facebook, this is any EXCELLENT group to join. Many of the people in the group have had good results with the Interstim!! Good Luck!!

    https://www.facebook.com/#!/groups/4...92633/?fref=ts

    Leave a comment:

  • armywife4life23
    ICN Member

  • armywife4life23
    replied
    I've tried EVERY treatment possible... hydro, sacral nerve blocks, DMSO, rescue instills, heparin instills, elmeron...the only two things I haven't tried are interstim and removing my bladder altogether (and that's NEVER gonna happen) So I'm scheduled to go in on Feb 5 to schedule my trial period of interstim. I've had great success with the nerve blocks that target the same nerves, except it only last for about 3 weeks. I'm hoping this means that interstim will work for me. My pain is very closely associated with frequency and retention. If I'm not having retention issues I'm usually not in pain...unless I've eaten something too acidic on accident. Is there anyone on here with a similar story who's had interstim and had success?

    Leave a comment:

  • GodgrantsMercy
    ICN Member

  • GodgrantsMercy
    replied
    I am so grateful you posted this. My Urogyn just asked me again on Tues after my 2nd instill if I was going to do the interstim. I never committed to it at all. Now you really have me thinking. Thank you so much!!!!!!!!!!!!!!!!!!!Lisa

    Leave a comment:

  • Julie B
    Support Leader

  • Julie B
    replied
    happyfeet413, Dr. Peters is in Royal Oak, Michigan. He is out of Beaumont Hospital and has a women's pelvic pain clinic there. :-)

    Leave a comment:

  • happyfeet413
    ICN Member

  • happyfeet413
    replied
    How far away from Michigan is this Dr. Peters?

    Leave a comment:

  • ChrisNes
    ICN Member

  • ChrisNes
    replied
    Nope, I would rather not feel any pain.

    Im just saying that pain is a sign that something is wrong.

    I got a shot of cortizone in my hip, it was GREAT for three days and then the pain came back

    I really believe to each their own. If you can find a way to beat the pain go for it!!!!

    I also know that when I step wrong and twist my bad ankle the pain tells me I had better get some ICE right now and put my foot up.

    Pain is just a warning sign.

    Leave a comment:

  • klzigler
    ICN Member

  • klzigler
    replied
    I also use a Tens unit. It does help with the pain but I can still feel other pain. When using a tens it only works on the section you place your patches. I get the hint you think we should feel our pain but how is a tens any different than taking pain medicine that makes you sleep, hurts your stomach, and makes you loopy. When I finally got my diagnosis in 2010 I made it my goal to try and live a normal life. Yes I have Ic but that doesn't define who I am as a person. I watched a family member fight addiction of pain medicine for years so I don't want that life so I try and be proactive. I went through physical therapy twice I tried different medicines and when a doctor offered a way out I took it. I was banking on something had to work. I was a lucky one and my interstim worked. I do have pain still but not like before and when I do I use my tens. I just read though tens can affect imterstim so I am trying to look up more information. If you are bleeding you use a band aid, if your in pain you try and stop it. To me it is common sense being in pain isn't good for you so why not try and stop it. With IC we know our pain generates from the bladder once diagnosed I think it is safe to try and alleviate pain before that I agree with you, if you don't no what is wrong with you it doesn't make sense to keep medicating yourself you need answers first.

    Leave a comment:

  • LithEruiel
    ICN Member

  • LithEruiel
    replied
    It says the outcomes for pelvic pain aren't very predictable though. I think it depends on what your pain comes from if it will help or not, but that's not easy to tell. If your pain comes from having so much frequency, then yes it would help. Who can tell though what specifically is triggering it...

    Leave a comment:

  • ChrisNes
    ICN Member

  • ChrisNes
    replied
    Here it says it can be used for pelvic pain...
    http://www.usadelaware.com/medical_b...structions.htm

    Interstim Test Implant Peri-op Instructions

    Description of Interstim Test Implant Peri-op Instructions
    InterStim therapy is a pacemaker for the bladder used to reestablish appropriate nueromodulation of the bladder. The device works by using a stimulator device in the buttocks to stimulate the S3 nerve root in the back. This is the primary nerve root for bladder function. Stimulating the S3 nerve root with the InterStim device can result in a dramatic decrease in frequency, urgency and urge incontinence. InterStim therapy can also improve bladder emptying and result in decreasing post void residuals and therefore decreasing urinary tract infections and the other complications of incomplete bladder emptying. InterStim therapy can also be used to treat interstitial cystitis and pelvic pain. Outcomes for interstitial cystitis and* pelvic pain* are not as predictable as outcomes for frequency, urgency and urge incontinence.
    For patients with significant symptoms of frequency, urgency, and urge incontinence who have tried anticholinergic medications but are not getting satisfactory results or cannot tolerate these medications InterStim therapy is an excellent choice. The two-step process of implanting an InterStim device requires a significant amount of time and energy on the part of the patient. The two steps include a simple test stimulation in the office or surgery center to gauge whether the patient is appropriate for InterStim therapy followed by subsequent implantation of the InterStim lead and the InterStim generator.


    This is what I use for some of my pain and it is being used for IC pain. http://www.healthcentral.com/chronic...t-36204-5.html
    What is a TENS Unit?

    TENS means "transcutaneous electrical nerve stimulation." TENS units are small devices that are battery controlled. Sometimes they can have attachments that go on your pants or pockets so that they are easy to bring with you where ever you go.

    How Does TENS Control Pain?

    Sticky patches (electrodes) are attached to the skin, and small electrical impulses are delivered to underlying nerve fibers. This works in two ways. The first is through endorphins. The body has its own mechanisms for suppressing pain. It releases natural chemicals called endorphins in the brain, which act as pain relieving substances. TENS units can activate this mechanism. Secondly, the electrical stimulation of the nerve fibers through the electrodes can actually block a pain signal from being carried all the way to the brain. If it is blocked, the pain is not felt.

    Many physicians use TENS in their offices to help patients with pain management. If the therapy works for the patient, he or she may be a candidate to either rent or buy his or her own TENS unit. Patients who use TENS units may experience significant pain relief, while at the same time engaging in a therapy that is drug-free. Users of TENS units generally report few side effects, though some patients note that their skin is red where the sticky patches (electrodes) are placed. This can be lessened by using different electrodes or gels.

    Leave a comment:

  • LithEruiel
    ICN Member

  • LithEruiel
    replied
    Very well said momw/ic!

    Leave a comment:

  • momw/ic
    ICN Member

  • momw/ic
    replied
    I think needing to feel pain is important in the cases of acute pain like appendicitis or something like that. With chronic pain it's not only necessary to not feel it but being in constant chronic pain can inhibit the body's health in other areas. My understanding is that these devices will not cover acute pain like they do the chronic pain because acute pain is triggered in our brains using a different nerve pathway. It's the same reason we can take strong pain medications for our chronic pain but still have a headache sometimes. After a person has had the same pain for 3 months or longer the brain switches it over to a different nerve pathway and the pain message becomes different and no longer sends the message to alert the brain that there is a problem in the body. I hope this makes sense. My pain doc has been all through this with me.

    I first got the interstim in 2006. I had terrible frequency and urgency on top of chronic bladder pain. The interstim worked wonders for my frequency and I believe helps certain kinds of my pain that comes from that. Just this past year my battery died and I realized just how much it really regulated my frequency issues. In June I had a new one put in. Even though my leads were not changed, this new one does not work as well. I am in the process of trying to get settings changed so hopefully it will be just as great as my first one. There is also a separate device that is a spinal cord stimulator that works on different nerves than the interstim and is a bit more involved surgically but that device is for pain. I have considered trying one on the side opposite of my interstim thinking that maybe the two working together would give me great results. I haven't talked to my doc about that yet though I plan to.

    I hope some of this helps to answer some of your questions!

    Leave a comment:

  • LithEruiel
    ICN Member

  • LithEruiel
    replied
    There's no cure for IC, so it doesn't matter whether pain is protective or not. We still need to be able to live our lives, which may include the need to cover up the pain. But yes, Interstim is not for pain, it's for frequency. Some people have said Interstim has helped their pain as well, but if your main problem is pain, Interstim isn't a good choice.

    Leave a comment:

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