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Thread: Nothing helps!

  1. #1
    ICN Member
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    Nothing helps!

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    Recently I began feeling pain and the burning sensation that is associated with UTIs along with the urgency. I was lucky enough to never experience pain with IC just frequency. I began to have the pain and burning feeling and went to the doctors where they told me I had white blood cells and blood in my urine. When I was diagnosed with IC I was told by the doctor that "it's basically a permanent UTI with no bacteria" so whenever I feel a little bit of pain or an increase in urgency I don't pay much attention because I'm aware that these are common symptoms. However, after starting Bactrim for this UTI I had no relief. I went back to my doctors where they told me my culture had come back negative and that it was in fact NOT a UTI. I decided to take a trip to my urologist to see what the deal was because I was under the impression this was a flare up, I've never had one before so I wasn't sure what I would feel. My urologist inserted medication into my bladder and told me that it should help with the pain and help me get over my flare up. He also took another urine sample. After 2 days of receiving this medication I sure enough had pain again but received a call from a nurse at my urologist that I DID have a UTI. I was happy because I knew I wasn't crazy and this was why I still had pain. I was started on Macrobid and am on my third day and have the pain again. The only way I can describe the feeling is that there's a massive amount of pressure on my bladder; it's more of an uncomfortable feeling then it is pain. I am at my witts end and feel so depressed and lost because I don't know what to do. The only thing that seemed to have any effect was drinking baking soda in water and even then that stopped helping. Any advice on anything to help the pain? Or has anyone ever had a similar situation and their UTI took forever to go away? I'm wondering if because I had an untreated UTI for 2 weeks that it's not becoming resistive to the antibiotic? Please help I'm miserable!
    Last edited by katelyn; 09-24-2017 at 12:40 PM.

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Nothing helps!

    I'm you found the IC Network.

    Only an IC patient will be happy it's "just" and infection; I hope the Cipro will bring you out of your current flare --- three days may not be long enough for it to get rid of the infection. Are you following an IC diet? If not, I suggest you begin today. There's a link to diet information in my signature below. There's also a link to AUA Guidelines that lists some treatment options you can discuss with your doctor, as well as some self help guidelines. I just hope you feel better quickly.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
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    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

  3. #3
    ICN Member
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    Re: Nothing helps!

    I am suffering from exactly the same thing. Two weeks after UTI, still not back to before.

  4. #4
    ICN Member jeanniebug's Avatar
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    Re: Nothing helps!

    Hi I realize this post is 3 weeks late, but wanted to chime in for anyone this might help in the future.

    I'm also suffering with same thing. Last month I went into a massive flare and could NOT get it under control. For weeks! Ugh! Finally a light bulb went off in my head I might have a UTI. And, sure enough, I DID. Not only that, but mine had morphed into a kidney infection as well, and this isn't the first time this has happened.

    And, as we all know, a UTI on top of an IC bladder is MISERABLE!!!!

    I'm not sure how many days your antibiotics were prescribed, but mine were 10 days. I was still feeling **super crummy** at day 5.

    It didn't start to feel better until day 7, then I started to feel massive relief. Made sure to finish the all the antibiotics too, even though I was feeling better.

    Also, Macrobid quit working for me. My Uro switched me to generic Keflex (Cephalexin) and it worked great.

    I'd developed flu-like aches/chills/nausea/fatigue for 3 weeks before I remembered to get checked for UTI. It's so hard to know what's coming first with IC, the chicken or the egg. : dizzy:
    Jeannie
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

  5. #5
    ICN Staff ICNDonna's Avatar
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    Re: Nothing helps!

    I totally agree that it's important to complete the ordered antibiotics even if you feel better before completing them. It just doesn't work to save some for later.

    It can also be important that a culture is done to be sure you are on the appropriate antibiotic for the specific infection. Sometimes wide spectrum antibiotics are ordered to hopefully get started on beating an infection, with a culture done so a different one can be ordered if necessary.


    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

  6. #6
    ICN Member
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    Utah
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    Re: Nothing helps!

    I haven't had a UTI in a while, but my adult daughter had one that went untreated for quite some time. She had three rounds of different antibiotics before it finally went away. Luckily, it was not in her kidneys. I hope you are feeling well soon.
    Daisy

    Current Treatment:

    IC diet (food that turns alkaline through digestion, not food from the acid/alkaline list), 2 cups of warm lemon water every morning (juice of one lemon), Forte amino acids

    Herbs: (Now discontinued) Marshmallow root tea, grapefruit seed extract, serrapeptase, omega 3, quercetin, colostrum

    Other/Rx: (All discontinued except birth control) baking soda, Tums, oxybutynin, amitriptyline, certizine hydrochloride, Loestrine 24 Fe

    When I'm in pain: gabapentin, xanax (I have to shut the stress in my brain down), pyridium, tramadol, Prelief

    To this point, four bladder dilatations: 7/11, 12/12, 12/14, 11/16

    Tried and discontinued after 2 years: Elmiron (sad, waste of time and loss of too much hair!)

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