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I can't do this anymore...so frusterated!

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  • I can't do this anymore...so frusterated!

    Hi everyone! My name is Konnie and I think I may have IC. I tried to send a post yesterday and after pouring my heart out I hit spell check and my post disappeared! I was so frusterated yesterday I just didn't repost but today I am determined to get the help I need so here I am again!

    I spent most of my miserable and painful day yesterday searching my symptoms on the internet and on the phone with doctors offices, oh yeah and in the toilet!

    I will try to give you a brief history. In 2003-2004/05 I have 15 UTI's in 9 months. Some tests can bag negative so my doctor put me on antibiotic and sent it out for culture, yet some came back positive. He suggested a few times "if this continues we will need to send you to a specialist" but we never did. I got pregnant with a HUGE surprise baby in June of 2005. I had not one UTI my entire pregnancy. I gave birth to an almost 10 pound WONDERFUL baby boy in March of 2006. When he was 3 months I discovered I had a dropped bladder which my OB/GYN told me just to do kegals for and it would be fine. When my son was around 6 months I started to get regular periods again (I was and still am breastfeeding). With these cycles I began once again getting UTI's. It only took 2-3 for me to figure out that there was a pattern. Within 2-3 days of my period ending I got a UTI every month. The first time I went to my primary care doc because my GYN could not possibly see me for 4-6 weeks. I gave a sample and was given Keflex (what I was told was the only safe antibiotic for me). The next month I called my doc with yet another UTI and was told he could not treat me because I am breastfeeding, call my GYN I called and once again they could not possibly see me for 4-6 weeks, call my primary Needless to say, I called another GYN who I had previously used and he got me in the next morning. My test was negative. He gave me another script for keflex and told me I needed a referal to a uroligist. I got the referal and in the meantime got another UTI, this time DH had some left over keflex from his vasectomy and I started taking that (I know bad). I went to the specialist and as I waited to go in I read an article of a women with IC. She had all of my symptoms. I went into the doctor in tears. Now at this point I wasn't piecing the puzzle together well and I didn't even mention that some of my UTI's came back as not UTI's. o the doc just looked at me and said this is not you...you have UTI's people with IC do not get UTI's HUH?????????????????? Now I know ohhhhhhh most of their urine comes back negative....
    On with my appointment. He did a urine test, he did an ultrasound of my kidney's, he did an internal and told me my dropped bladder was severe and I need surgery. He then did some test were I stood with a chuk pad under me and he held my bladder as I coughed. He then said I have incontinence and he needs to do some tests to see which kind and I will need surgery to repair that too. I told him about y breastfeeding and that unless "medically" necessary any surgery would have to wait until my son weans. He agreed we could wait. He the told me he thought I had kidney reflux because I got kidney and UTI's as a child and sent me for a VSUG. It took two cycles to get that test done because I got my period and then I got another UTI, which he called a script in for me, and then I had to be infection free for two weeks before he would let me do the test. Let me just say I have no idea how children do that test. It was HORRIBLE! I went in afarid of the catherer but when they filled my bladded the pain was unreal! I was then in pain for a few days after the test. It took me two weeks of calling to finally get the results from the doctors office. All looked fine...and...well the doc doesn't have you down for any more tests so unless you get another UTI that is it. WHAT???????? Now I remember him saying he wanted to do a urodynamics test but that was for the incontinence not the UTI's. The nurse said nope that is it! GRRRRRRRRRRR!!!! That month I didn't get a UTI. I felt hopeful. Then yesterday I woke up............for two days or more I was aching just not right. i thought it was the wacky weather. I also felt a few twinges of UTI symptoms here and there but tried to ignore it, no I am NOT getting another one. I was also EXAUSTED. Well yesterday I woke up and that morning desire to tinkle felt not normal, it felt classic UTI. I was afraid to go to the bathroom and when I did there was no second guessing I had a full blown UTI. I couldn't even take my DD to school yesterday. I got 5 minutes down the road and had to call a friend whose kids go to the same school. She met me on the side of the road and I cried all the way home.

    I am so sorry this is so long! I called the uroligist office immedietly and was told "I don't know what to tell you the doc is in surgery all day today". I asked for a nurse and was put through to a voice mail. in the meantime I called my primary and left him a voice mail that I wanted another referal. I got a call back from the nurse with the same oh well attitude. I pretty much said I have to be treated! She asked me how I was qualified to "know" I have a UTI. UGGGGGGGGGGG!!! When I began to cry she offered to send me for a urine test at the lab and call me in a 2 day trail of antibiotic until the doc could see me. It took 3 hours to hear back about going to the lab. I went, pee'd and came home. NO SCRIPT WAS EVER CALLED IN FOR ME! My doc called me back with a new referal and I got an appointement for the 25th, next week. Some relief, emotionally that is! I began taking uristat and pumpkin seed oil and more cranberry pills and motrin. I found a few keflex and took two. I called the doc this morning and the nurse called back saying "I left the note on his desk last night but he must have overlooked it" She then proceeds to tell me he is in surgery all morning but with be in their other office in the afternoon, his 1st appointment is at 3. She will forward a note to his medical assistant and I can call there in the afternoon. She then asks if the pills I planned to take helped (I told her I was going to take uristat after I gave my pee-pee sample). UGGGGGGGG!! I said it does help take the edge of but you do realize it is not antibiotic right?

    OMG I don't know if I want to scream or cry!!!! I cannot do this anymore! I am way too busy to go through this every freaking month! I spent my day researching yesterday and it just so happens that the doc I go to next week is on the referal list on this site, the ONLY doc in my area. I want to be hopeful that he will help me but I am so doubtful now! I left another message for my primary this morning. I need to know how many of my UTI tests have come back negative. I also picked up an AZO test kit yesterday and did it. It came back positive for WBC and negative for nitrates. When I asked the nurse if my test results were in she said no it takes at least 48 hours.

    I called my dad yesterday in tears. I am NOT a hypocondreat (sp) when there is something worng with me there is really something wrong. These docs act like it is no big deal. I know now why people with chronic illness get so depressed. I need someone to tell me what I have and that I will be okay! I have 3 kids and a husband to take care of. UGGGGGGGG!! I am sorry!

    My doc just called and in 2003 I had 2 come back negative and 1 come back minimal 10-50,000 count she said? So maybe 1/4 of my infections are negative. Maybe it is not IC. I don't know but I just pray this doc helps me!

    Any insightor encouragment, been there done that stuff would be great. I am exausted, I am in pain, I am worn out from this stuff!

    Thank you!

    Konnie

  • #2
    Wow, you are really being put through the wringer!! I'm so sorry!!

    Welcome to the ICN Believe me, none of us think you're a hypochondriac... we've all been there, sitting with weird symptoms, and having a doctor be unwilling or unable to figure out what's wrong.

    It sounds like you really need to see a decent urologist -- it really seems the one you have seen is not interested in helping you much. It may be because he deals mostly with male urology; sometimes that causes docs to be dismissive of women. Or he might just be a jerk. Regardless, it's time to switch. You need to find one that deals with, or better yet, specializes in female urology.

    It sounds like you may have IC, but many things must be ruled out. However, the fact that you have many negative cultures, and that your urine is often positive for WBC's but not nitrite, suggests IC is a definite possibility. So does the fact that your bladder symptoms coincide with your menstrual period, as many ICers complain that their IC flares around period time (I know mine does).

    In the meantime, please look at our Patient Handbook if you haven't already (http://www.ic-network.com/handbook). This contains tons of information about how IC is diagnosed and treated.

    In addition, it has lots of self help strategies, including the important IC Diet. What you eat can often affect your bladder negatively, so take a look at that section and put yourself on the diet for a while -- at the very least, avoid things like citrus juices and especially, NO CRANBERRY. I know they say it's good for UTI's, but it is awful for IC -- like pouring acid on a wound. Chocolate, coffee, and spicy foods can also be irritants.

    I hope some of the things in the handbook can help until you get in to see a doc
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

    Comment


    • #3
      HI! OMG you have been thru the mill! I'm SO sorry to read all that!
      First off....you can get neg. UTI tests and have IC. When that happens my puts me on 500mg Cipro for 3 days. That gets me thru it.
      Also, IF you have IC.....throw away those cranberry pills. They are sure fire flare starters! I would suggest, until you see your dr. start on the IC diet and eliminate all flare foods,,,Caffeine, Chocolate, citrus, spicy, seasonings, night shade foods......the works! And see it that helps you at all.....I'll bet you will see a difference in a weeks time.
      There's lots of great meds out there too to help with pain and helping in healing the mucus lining. I'm sure your URO will explain those to you.
      You have come to a great site for info and caring people.Don't give up. It's difficult right now but it'll get better! PM me if you'd like to chat. Please keep in touch and let us know how you are doing. (((HUGS!))) Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        It does sound like IC is a possibility, but it's not necessarily your problem. Many, if not most, urologists rule out all other possibilities before considering an IC diagnosis. I know mine did --- and it was six months before I had the hydrodistention that diagnosed my IC.

        Here are a few things you could try that might help avoid infections; it wouldn't hurt to give them a try: (1) Cleanse yourself in a shower. The female urethra is very short and when you sit in a tub of water, you are sitting there in the dirt and germs you have accumulated on your body --- and it's possible for some people to get repeated infections from their own bath water. (2) Use only plain white, unscented, toilet tissue and blot, don't wipe the urethral area --- I'm sure you know to be cautious about using separate tissue to wipe after a bowel movement. (3) Wear only plain white, cotton underpants and rinse them twice after washing them. (4) Use a very mild soap to bathe, such as Dove, Neutrogena, or Cetaphyl. and (5) Be sure to drink at least six to eight cups of water every day.

        Hopefully one day soon you'll have a diagnosis. I know my worst time with IC was before diagnosis.

        Warm healing thoughts,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Thank you

          Thank you so much for your replies! I am going to check out the patient handbook right now. Thank you for all of the suggestions too. I am going to check out the diet also. I already use all of the hygiene suggections but I down cranberry pills like a made women around my cycles. I have a glass next to me right now that needs to go down the drain!

          I am prayerfully hopeful that this new doc will help me. I can't go on like this!

          Thanks again ladies!
          Konnie

          Comment


          • #6
            I had a horrible time like you are describing just before I was diagnosed. It took me 7 months to get a correct diagnosis and I felt alone and desperate for some pain relief. I do get frequent UTIs and have IC, so the doctor didn't know what he was talking about!! I'm so sorry this is happening to you.
            I did a lot of on-line research like you said you did. One interesting thing I read is that some women are allergic to certain types of pads or tampons. That could possible be why you are getting always getting UTI symptoms during your periods. I think there is a special hypo-allergenic kind out there.
            Just be persistent and call you nurse a ton until you get a response when necessary. Someone told me that you need to be the "queeky wheel". I have lost my patience a lot with doctors and it doesn't seem to help when you get fed up and let that come through in your messages. Once you get a proper diagnosis you should have an easier time getting through. Hang on until then!! I just call and call until I get my presciptions. It is a pain because I take MS Contin which needs to be a written presciption every time in CA.
            You might be able to get Macrobid as a preventative anti-biotic. That has helped me. I got like 8 UTIs all in a row, then took that for a month, and haven't had one in a while.

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