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Thread: UTI thats not a UTI?

  1. #1
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    Default UTI thats not a UTI?

    I get them all the time. The first one I ever had, I didn't even have any symptoms but it showed up on a test. Ever since then I have had them on and off with on and off having symptoms of them. The past few times I have gone to the doctor thinking I had one and felt miserable because of it I didn't actually have one. Last time they wrote me a script for an antibiotic anyway thinking maybe they just missed it since they know I get them all the time. Well I called the doctor today because I went the other day to get tested for one again and they said it was negative, again. So, what causes a "UTI" that isn't actually a UTI??? Any suggestions would be much appreciated, because waking up a million times a night feeling like I need to go to the bathroom when I really don't is becoming quite a problem and making me lose sleep.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
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    There are definitely some bladder conditions that basically result in chronic irritation. Interstitial Cystitis is one (info here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001508/), but there are others. It sounds like it might be worth you trying to get in to see a Urologist who specializes in women's issues.

    I have had chronic UTI's for years (off and on)...they've done all sorts of tests - some of them pretty uncomfortable, but it's important to rule out things like bladder cancer, lesions on the bladder wall, etc...

    When things get bad for me I am getting up 3-4 times a night to pee...it's not like I have to go really badly, it's just that I can't sleep if there's ANYTHING in my bladder. It's really frustrating to wake up, get out of bed, go to the bathroom, and then pee about 3 Tablespoons...seems like such a ridiculous waste of sleep!!! And sometimes my bladder just HURTS for no good reason. Sometimes coffee, or ibuprofen, or certain foods bother it (any sort of cooked tomato is horrible - I can't eat any sort of red sauce on pasta, etc), but sometimes they don't...I can't figure it out. Neither can the docs. There's nothing wrong, per se...I just have a sensitive bladder (lucky me!!! - NOT!).

    I don't have any incontinence issues, or real urgency - just a "sensitive bladder", and a tendency to get UTI's. IT SUCKS!!!! But there are things you can do for it.

    I hope you get some good medical help and relief soon...it's a horrible feeling.

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    Gizmo (12-17-2011)

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    My rheum told me to see a gyno about it and so I called to make an appointment the other day, my first one, and its going to take over a month to get in! Ughhh. My entire life I have had bladder/peeing related issues. When these problems "flare up" I feel like I have to go to the bathroom 24/7 and most of the time I can't. Incontinence, urgency, discomfort. I have all of the above lol
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Maybe try a different gyn, or ask to be put on a cancellation list with the one you are scheduled to see. Do they have a nurse practitioner who could see you sooner? There is a specialty called "uro-gynecology", but there aren't very many of them. My daughter was helped tremendously by a physical therapist who specializes in pelvic and bladder problems. She knows more than any doctor, and is actually able to help people get better - imagine that! You might ask the doctor for a referral to that type of PT, especially for the incontinence. My guess is that a urologist will be able to do more for you than a gynecologist.

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    Have you tried pyridium just to see if it makes a difference in how your bladder feels? Unfortunately you might need to see a urologist (try to visit a female uro)
    I found out that I had a neurogenic bladder and neuropathic bladder. After they ruled out certain problems they treated the DSD with flowmax and Pyridium for when my bladder feels painful.
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    Gizmo (12-17-2011)

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    My daughter had these symptoms at your age, too. The docs put her on a low-dose daily preventative antibiotic. Now that I've learned a lot about my own spasming bladder and possible interstitial cystitis, I wonder if Kayla has the same problems as well.
    I know that you are seen at a teaching hospital. Ask to see one of those uro-gynos and ask a lot of questions.

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    steve.b (12-17-2011)

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    My rheum didn't suggest anyone and my mom wont help me because I think she feels uncomfortable with it or something she gave me the number for her doctor and that was it. My mom has had similar problems and said that she saw a gyno too who ended up sending her to a uro so I dont know why everyone didn't just send me to one to begin with and I dont even know where to find one.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Unfortunately, I have had to find most of our doctors by doing online searches. If your insurance doesn't require a referral, you should just be able to call a urologist or uro-gynecolosist and make an appointment. Marla's suggestion is a good one - look for a urologist at the Childrens Hospital. I don't think you'll find the uro-gyno there, though. We only have 2 in the entire Denver area and they book out pretty far. If you call your PCP, he/she should be able to give you the name of a urologist. The pyridium suggestion is a good one, too. It's OTC as Azostandard, I think.

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    my grandaughter is 5 years old and is always running to the bathroom and sometimes she goes and sometimes she feels like she has to and jumps up and down to try to go she has been to a periatric uriologist and he said she will outgrow it but it is very frustrating ti watch her

  13. #10
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    Bonita,
    We watched Kayla doing the same thing as a toddler and we were told the same thing. Finally, when she was four, a doc took us seriously and ran some tests. They were shocked to find that her ureter on one side was way too long and attached into the bladder in the wrong place, causing reflux and those frequent UTIs. I have two complete ureters on one side, and I've also had lots of UTIs. My Dad told me that these kinds of problems run in the women on his side of the family.
    Kayla had surgery to reattach the ureter, and it worked for a few years. By the time she was a young teen, the ureter collapsed and the kidney on that side stopped working and shriveled up. She has done fine with one kidney, but I really worried when she was pregnant. Now she is careful to keep a close eye on her symptoms and takes care of any UTI very quickly.
    Keep a close eye on your granddaughter, and encourage her parents to demand a closer look if those symptoms persist.
    Hugs,
    Marla

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