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    Default anyone else have interstitial cystitis

    Just curious if anyone else has this. I went in to have kidney stone removed (which they didnt get) but they told my husband i have this. One or two of the def i found for this says its autoimmune and some of the others never mentioned that. I know its very annoying at 31 to have to pee like every 5 min somedays i feel like i should just conduct anything i have to do for the day from the restroom. sorry venting i guess been on the couch for nearly two weeks getting bored.
    Last edited by almostcrazy; 09-19-2011 at 12:08 PM. Reason: misspelled word

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    I do not have this disorder, but I wanted to let you know that most people who have it, also suffer from another auto-immune disorder, such as Lupus, Fibromyalgia, Sjorgen's, IBS, and others. The painful bladder disorder in people with Lupus was known in the past as ‘lupus cystitis’, but is now generally referred to as PBS/IC. As with Lupus, there is a high predominance of women patients with PBS/IC.

    As with Lupus and Fibromyalgia,many PBS/IC patients have a major problem with tiredness, this can be due to the fact that you are constantly awakened in order to go to the bathroom. This broken pattern of sleep makes you exhausted, irritable and depressed. Often, you may find that your bladder becomes particularly irritable/full the minute that you lie down in bed and this makes it hard for you to go to sleep. The constant need to urinate throughout the day is also exhausting because you never have time to relax. Chronic pain can also make you very tired because your body is constantly in a state of stress.
    There is no simple treatment available to eliminate the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find a regimen that works for you.


    The following are some medications that may improve the signs and symptoms of interstitial cystitis include:

    • Ibuprofen (Advil, Motrin, others), naproxen (Aleve, Anaprox) and other nonsteroidal anti-inflammatory drugs, to relieve pain.
    • Tricyclic antidepressants, such as amitriptyline or imipramine (Tofranil), to help relax your bladder and block pain.
    • Antihistamines, such as diphenhydramine (Benadryl, others) and loratadine (Claritin, others), which may reduce urinary urgency and frequency and relieve other symptoms.
    • Pentosan (Elmiron), is the only oral drug approved by the Food and Drug Administration specifically for interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency. Side effects include minor gastrointestinal disturbances and possible hair loss, which reverses when you stop taking the drug. Make sure your doctor knows if you're pregnant or planning to become pregnant.

    I hope that this information has been helpful to you. Please let us know if you need anything further. I hope that you find some relief

    Peace and Blessings
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    Saysusie
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    I think that I might have it.
    When I complained to my rheumy about incontinence, she just dismissed it as a sign of menopause (I'm 54). However, I've read about ladies here and on the Sjogren's site having IC, so I suspect that I could have it. Of course, incontinence is also a symptom of spastic paraplegia, which has been suggested as one of my problems, so that could be causing it, too.

    It is really a pain, isn't it? I can be sitting on the couch and just feel that I might need to go. By the time I get up, I'm leaking already, and it's a real emergency by the time I limp down the hall to the restroom. I also have to get up and go several times a night, and the trip across the hall can easily become an emergency. My legs are spastic, and I can't move very fast. I think that I must know every public restroom in town, because I can't go anywhere without using their potty. I can only go 20-30 minutes between potty runs. This makes shopping at the commissary (military grocery) a long ordeal for me.

    My physical therapist was the only medical professional who has ever been understanding about this. She had me to do lots of Kegal exercises and she suggested that I use Poise Pads. They really are discreet and helpful. They might help you, too.
    I hope that you can get a dx and get some help with this.
    Hugs,
    Marla

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    Thanks so much. Just curious where you found that info at would love to read alittle more on it but I cant find much.

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    There are lots of sites with information about it if you Google it.
    Here's a really good one to get you started: http://www.ic-network.com/
    Hugs,
    Marla

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    I have not been dx with lupus to start just joined here because i think i have it or something like it. Went back to my Dr. today to discuss the IC and mentioned that autoimmune and he nearly laughed said that it hadnt been proved that IC was autoimmune. He also added that the antidep only helped because the people that have it are depressed lol Think i need a new dr. but anyways gonna try to medication you put in you bladder hopefully next wk. thanks for you help

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    Quote Originally Posted by almostcrazy View Post
    I have not been dx with lupus to start just joined here because i think i have it or something like it. Went back to my Dr. today to discuss the IC and mentioned that autoimmune and he nearly laughed said that it hadnt been proved that IC was autoimmune. He also added that the antidep only helped because the people that have it are depressed lol Think i need a new dr. but anyways gonna try to medication you put in you bladder hopefully next wk. thanks for you help
    This happens WAY to often and it makes me so angry!!!I am not telling you what you have or don't have because I am no doctor and I don't know. I am telling you that a 2nd opinion may be your best bet. Having a doctor that laughs at your questions and/or ignores your questions is not a doctor that is going to work with you. You are your own best advocate and you never want to go to a doctor that discounts your questions. They work for you, not the other way around.

    You do what you need to do and don't let anyone dismiss you or your questions!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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