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  1. #1
    ICN Member JustWantAnswers's Avatar
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    My doctor thinks I have this....

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    Hi everyone. I'm 23 and my doctors think I have IC. I have lupus, fibro, possible endo, PCOS, epilepsy, narcolepsy, hyper mobility, ANS dysfunction, POTS tacky/ Brady syndrome, bleeding disorder (to name a few issues). The past several years I've always felt like I had UTIs several times years but always came back clean. For the past few months I always burn like I'm having a uti, having to pee a lot, and discomfort in my lower stomach. I've done belly scans, and inner vagina scans and they came back normal. The pain gets so bad that I've really haven't been able to hold down food in the past few months. It's also physiologically bugging me having my lady area burn 24/7. It's causing me a lot of anxiety and depression.

    I'm also peeing blood at times.... I see a urologist next week.

  2. #2
    ICN Member JustWantAnswers's Avatar
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    Re: My doctor thinks I have this....

    Bump......

  3. #3
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    Re: My doctor thinks I have this....

    Have you had a urinalysis done? Sounds like a really bad infection. People with IC often have trace blood in their urine but not visible blood. I would have the test done and have it cultured to make sure nothing is there. Are you following the IC diet? If not check that out. Is your gall bladder ok? Hopefully your Urologist will be able to find the proper treatment. When you have IC you never think it's just a UTI but sometimes it really is that simple. I hope you are feeling better soon.

  4. #4
    ICN Member JustWantAnswers's Avatar
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    Re: My doctor thinks I have this....

    Quote Originally Posted by Cindi1967 View Post
    Have you had a urinalysis done? Sounds like a really bad infection. People with IC often have trace blood in their urine but not visible blood. I would have the test done and have it cultured to make sure nothing is there. Are you following the IC diet? If not check that out. Is your gall bladder ok? Hopefully your Urologist will be able to find the proper treatment. When you have IC you never think it's just a UTI but sometimes it really is that simple. I hope you are feeling better soon.
    Yes, we have had over 10 tests done. All come back normal other than the blood and protein in it.All the cultures have come back normal. They said galbladder is okay, and sometimes with the tests I'm unable to see blood in the urine, yet it comes back blood in it. But sometimes I can see blood in it. I was also on antfibotics for several weeks as a 'just in case'. They also did a more indepth urine test to see if the infection could be higher up and that came back negative.

    What is the IC diet? I don't do Meat, Dairy, eggs, honey, refined sugars, soda, gluten.

  5. #5
    ICN Member
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    Re: My doctor thinks I have this....

    The IC diet is more about acid content and other ingredients that can irritate your bladder. You can check it out here:

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

    Have you tried any bladder meds? You can get AZO over the counter. It helps with burning and urgency. I'm sure your urologist will find the right treatment for you. Sometimes it does take some trial and error to get it right.

  6. #6
    ICN Staff ICNDonna's Avatar
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    Re: My doctor thinks I have this....

    to the IC Network. I know how frustrating it can be when something is wrong, yet we don't have a definite diagnosis --- My IC was diagnosed 42 years ago and my worst time was before I was diagnosed. Somehow, once I learned what I must deal with, I was able to begin dealing with it --- and with my IC diet and drinking enough, I actually feel good most of the time.

    I'm sending along well wishes,

    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

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

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    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

  7. #7
    ICN Member JustWantAnswers's Avatar
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    Re: My doctor thinks I have this....

    Quote Originally Posted by Cindi1967 View Post
    The IC diet is more about acid content and other ingredients that can irritate your bladder. You can check it out here:

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

    Have you tried any bladder meds? You can get AZO over the counter. It helps with burning and urgency. I'm sure your urologist will find the right treatment for you. Sometimes it does take some trial and error to get it right.
    I'm unable to have NSAIDs and asprin (due to bleeding disorder), allergies to narcotics, and liocaine. SSRI's, and SSRN's make my platelets too low. I've tried klonpin, tramadol, lyrica, Vistaril, tyenole, AZO, and some bladder medicine to help the spasms. I was also on antibitoics for several weeks to make sure it wasn't an infection. AZO numbs it so it doesn't burn as bad..... but doesn't take away the sharp pelvic pain.

    As for the diet -- It seems I do pretty decent:


    - I don't drink caffeine
    - I don't drink soda
    - Don't do alcohol
    - The only fruit I drink out of the list is orange juice (and have to with my iron pills)
    - I'm allergic to tomatoes so I don't eat those
    - No spices or vinegar (yuckie and ouchie)
    - No fake sweetners (gross)
    - I'm on a low histamine diet
    - No glutten

  8. #8
    ICN Staff ICNDonna's Avatar
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    Re: My doctor thinks I have this....

    When iron pills were ordered for me, my doctor recommended I take vitamin C --- that it would make for better absorption --- when I told him I couldn't tolerate Vitamin C, he said that was okay. You might want to ask your doctor about stopping the orange juice for a while to see if that helps. At least you could go to low acid orange juice. I keep a copy of the IC diet food list handy so I can consult it when planning meals.

    Good luck!
    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

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

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    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

  9. #9
    ICN Member JustWantAnswers's Avatar
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    Re: My doctor thinks I have this....

    Quote Originally Posted by ICNDonna View Post
    When iron pills were ordered for me, my doctor recommended I take vitamin C --- that it would make for better absorption --- when I told him I couldn't tolerate Vitamin C, he said that was okay. You might want to ask your doctor about stopping the orange juice for a while to see if that helps. At least you could go to low acid orange juice. I keep a copy of the IC diet food list handy so I can consult it when planning meals.

    Good luck!
    Donna
    For me they are needed because I can't absorb vims very well and always chronically low, I'll try to find a low acid juice for now. It's the only thing that keeps my levels high enough that I don't require iron drips. The calcium pills actually made the burning worsen.

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