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  • hello fellow icers.

    My name is Angela.I am twenty four years old from TN.I have had bladder infections as a young child but they were easy to get rid of and didn't really affect my life.A quick course of antibiotics and I was better.

    I had previously tried to post my story a few minutes ago and had some technical issues so I'm going to make it a little bit shorter this time and remember to copy/paste it somewhere else in case it doesn't end up getting posted again.

    Within the past 1-2 years I have been having recurrent bladder infections/UTIs that have been resistant to antibiotics and they wouldn't go away.I have been to numerous ERs,walk in clinics,and my primary care Dr about the issue. I have peed in a cup more times than you can count for urinalysis. None of the medicines they were using seemed to help or they would help for a little bit and then the infection would be right back again.
    (Cipro,Macrobid,Doxycycline and more antibiotics). I tried what you normally try the natural remedies at home cranberry juice,etc nothing worked.I would never get any prescription pain medicines.I would be told to take over counter ones which would not ease the pain at all.

    With each one of these current episodes,I would be in excruciating pain,be severely dehydrated,not able to pee or it hurt when urinating,sometimes a low grade fever,headache,fatigued.If I was lucky,they would hook me up to a saline IV for the dehydration,prescribe me antibiotics yet once again and send me on my way.

    Last week,I finally got fed up.I couldn't stand the constant pain anymore.I got an appointment with a Dr. who does gynecology and urology.He did a well woman exam,ran STD tests,and looked at my bladder.Asked for me to pee in a cup so he could send it off and culture it.He gave me some clindamycin vaginal insert cream and told me the proper amount of Motrin to take for the pain.I was feeling quite confident with this new doctor because he actually listened to me and didnt give me antibiotics by mouth like the rest of them did.Using the cream at home made me feel a little better,but not much.

    His nurse was supposed to call me back with my lab results,prescriptions a few days after the appointment. I never received a call so I decided to take matters into my own hands. I called the lab and they said they had faxed the results to the dr's office.So I decided to go in person to the dr's office.I was met by a frantic nurse who called me Jessica *rolls eyes* who says she's been trying to call me all day.

    Anyway,she said I still had the infection and the Dr wanted me put on Macrobid again.I burst out in tears.The nurse knew my story how long I've dealt with this and Macrobid wasn't going to work.I asked her to call the doctor for me.I literally begged him to admit me to the hospital so I could get some tests run on my bladder/see whats going on with my body.At first he was hesistant to admit me saying that insurance wouldn't pay or I would receive thousands of dollars in hospital bills at that point I told him I didn't care about money. My health was at stake and this had been going on far too long without a resolution out-patient wise.

    He agreed to admit me.I stayed in the hospital for 2 days.Found out all STD tests were negative so that eased my mind.They treated me with IV saline,percoset for the pain and IV vancomyacin a very strong antibiotic.It completely cured the infection. They did a catheter and drained my bladder,the bacteria was completely gone out of my system based on the urinanalysis.I was overjoyed.I was in no pain and felt like myself again.

    I strongly believe if I hadn't been admitted to the hospital, I would still have the infection,maybe worse.

    UPDATE AS OF NOW:So,after I was discharged from the hospital,the dr said he wanted me to come back a few days later to the hospital and let him put me to sleep and do a procedure called a cytoscopy.I said OK.Went in for the procedure a few days later.They told me after the procedure it would be normal to feel some pain.The doctor determined I had cystitis after doing that procedure.It's been 3 days since the procedure.I am in pain and feel like my infection is coming back,either the bacterial one or a yeast infection.I have a fever again I feel like I'm back at square one.My doctor said the infection was behind my bladder.Thats why it was so hard to get rid of.He wants to see me in his office in 1-2 weeks to do some 'bladder treatments'?Said this may take several months to resolve. But from what I've read it can be a lifelong problem? How am I supposed to be able to enjoy sex with my future husband if I can't even pee? Will I be able to have babies?

    I am supposed to be starting my dream job Valentines Day week but at this point I do not know if I will be able to go in to work because of all the pain I'm in.I am on Zoloft and Klonopin because I have had a rough past 2 years not related to this health problem but family/relationship issues.I recently rededicated my life to God cuz I couldn't handle it all anymore on my own.I need all the prayers I can get.

    Thanks for listening/reading my story.I'm glad I found this forum.I definitely need some support from others going through the same thing.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    DMSO treatments(5-6)

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction

    Add me on facebook Angela Hasic

    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

  • #2
    Hi Angela, welcome to the board!

    This is only my opinion but going right into bladder instillations seems a little aggressive to me. You were only recently diagnosed with IC and "usually" there are more conservative approaches to start with. Alot of people start off with these meds:

    elmiron-rebuilds the bladder wall but takes months to work
    hydroxizine-an antihistamine that helps alot of ICers as often their bladders have mast cells in them that respond to this medicine.
    elavil or generic-low dose antidepressant that helps with pain and relaxes the bladder.
    others - pain meds
    IC Diet- on the main home page of this site. Most IC folks swear by the diet. I was one who was skeptical but am finding there are definitely things that bother me. The biggies are coffee, tea, alcohol, carbonated beverages, condiments like mustard etc, all tomato and sauce, chocolate and many more. Have you looked at the diet?
    You might find alot of relief with these types of meds and diet first.

    When there is no success with these then I think instillations are usually discussed. Some people have success with instillations but others do not.

    What is also confusing to me is that you have actually been having bacterial infections and I would think that should be cleared up first. Alot of people after a cystoscopy can get a bacterial infection from the catheter etc. so I would get yet another urine sample done which probably makes you unhappy but if you have a fever you should see a doctor tomorrow or soon as you can.

    Hope you're feeling better soon.

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      This was the same case with me! Are they saying you have a UTI from preliminary results like leuokocyes, nitrates, blood and specific gravity of the urine? Whenever I pee in a cup for them I am always positive for a "uti" but the culture comes back negative. I've noticed that the dr never called to tell me my cultures were negative and I continued to take my antibitics. I was on them for 2 years straight!!! Don't give up hope. I've learned that for some dr's its easier to say you have a UTI than to actually figure out what is wrong.
      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).


      • #4
        I just said a prayer for you and I posted some stuff on another forum. You will get better! We don't have any uro/gyns where I live so maybe he knows what he's talking about. I've had more than one doc tell me nothing is wrong with me! At least until you wait for your appt., try to only eat whats on the diet. I once had to stay on the diet for 3 weeks straight before I got some releif. I am on Elavil and it took a few days before I saw releif. Maybe he's wanting to do a rescue instill on you? I've never had one but I've heard great things about them. Good luck!
        symptoms when in a flare:

        I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
        *I have a fibroid on my uterus near my bladder.

        100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
        Flexoril 10mg (doesn't work)
        Hydrocodone 5/325 PRN
        Cetalopram 40mg *severe anxiety over flare

        Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
        My urethra are very tight.

        currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

        I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012

        find me on Facebook! Brandy Schildknecht Covington