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OK guys I feel like I'm really at the end of my rope here : warning long rant.

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  • OK guys I feel like I'm really at the end of my rope here : warning long rant.

    I have a headache and feel nauseated after talking to my nurse over the phone.I've felt really depressed/like I'm being ignored/Nobody cares about me or me being sick for days now.I do not know where to begin.

    Ok i have been questioning my IC diagnosis lately and me questioning it is making both my nurse and some family members mad "the doctor is never wrong" type thing.ive never said he IS wrong. i just need some clarity on whether i really do have the condition or not or if its something else.

    some of the symptoms i do have match IC and some of them dont.
    for example:urgent need to urinate (urgency), a frequent need to urinate (frequency) i have neither of these. i can hardly pee. i have to strain to pee. i drink and drink and drink water and i still cant pee.im not one of those people going to the bathroom every 5 mins or waking up because the feeling of the need to pee is bothering me (i feel very sympathetic for you guys that this is one of your symptoms no offense,i dont know how i could deal with that).i have the chronic pelvic pain and feel pressure,no matter if i pee or not doesnt make a difference im just constantly hurting.Everyday when i wake up my pain is a 10 and the percocet brings it down to like a 5 or 3.It hurts to sit or walk or do anything because of the pain.Ive been having fevers lately,do IC patients have fevers as a part of IC?

    Everytime I've went to the dr my urinalysis has shown some type of bacteria in my urine and everytime they gave me antibiotics in the past it would clear it up.Except for this last infection.It was a very bad bug and they had to put me in the hospital to clear it up.

    Arent IC patients usually feeling the symptoms of the UTI but have no bacteria presence in the urine?I had bacteria presence everytime either thru culture or dipstick up until they cleared this most recent infection up.

    i do not have bladder spasms not once have i felt my bladder spasming.i do not have periods anymore due to coming off the depo shot. i dont know if i will ever see a period return.that shot really messed up my body and i dont recommend to anyone.so i dont know how or if ic would affect me if i was menstruating.

    i had pain during sex occasionally when i was sexually active but attributed it to lack of lubrication and the partner i was with was always rough.. i believe he was probably hitting my bladder.

    so heres the deal all the medical stuff ive been through so far:blood tests,std tests,many urinalysises,cystoscopy (dont know if it was with hydro or not all i know is i was put under anesthesia),catherization,well women check up/pap smear,colposcopy due to abnormal pap during the week i had the infection in the hospital,ultrasound/ct scans of my bladder,kidneys,urethra,and most recently a dsmo treatment that has left me in even more pain/suffering.

    i dont really know much about the results of all these tests cuz no one has bothered to sit down and explain them to me or why/how the dr came up with the diagnosis of IC.blood work-normal std tests-negative well women/pap-ok after colpo, colpo/biopsy for cancerous cells negative,they said the ct of my kidneys were fine but i have no idea about my bladder if it is showing any scarring or not on the xray.i called the nurse today and she said it was the cytoscopy that determined i have IC and wouldnt tell me any more info.The dr never went over the cytoscopy results with me and has basically put the nurse in charge of all my treatments,prescriptions,etc.so the nurse has this attitude like shes the dr now and its really pissing me off.

    so i made an appointment to talk with the dr tomorrow in his private office so he can show me my chart/go over all these results with me and explain to me how he came to the conclusion/diagnosis of IC.I'm still thinking its just another UTI..and long term antibiotic treatment would make me feel fine/normal again.But who knows.I just want to make sure its IC because IC is a very expensive and painful condition to live with.These treatments have been expensive and the Elmiron is going to cost my family 1000 bucks a year with insurance.I feel so sorry for the people without insurance.Anyway,end of rant.I hope this appointment tomorrow wont be a waste of time and I will get the answers I deserve to know as a patient.Its like all this info has been hidden from me locked away in a drawer and its MY body. sigh.end of rant.thanks for reading if you made it this far. now i just find the out the pharmacy has given me the wrong prescription from the wrong dr. its in my name but its an antibiotic i took a long time ago macrobid. i was wanting to get my elmiron that was supposedly called in by the nurse. sigh.what a great day.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

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

    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
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    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
    Have you been checked for bacterial vaginitis? If you have BV the bacteria sits around your urethra and can cause a bladder infection. Simple but stupid stuff but if you wear thongs, don't. I have learned the hard way that the e coli travels up the fabric to the urethra and can cause re occurent bladder infections. Also pee after sex immediately and make sure you are only wiping from front to back - simple things but some people don't know this and are creating the infections themselves. I would say if your cultures keep coming up with bacteria then it's definately a bladder infection. I have NOT been diagnosed with IC nor do I have IC - I suspected I had it until I was diagnosed with BV. Once that was cleared up then the issues went away. I do have endometriosis and during my period on my worst days I have that urinary hesitancy where you feel like you're going to bust a vein in your head pushing to get the urine out. I know some members on this board have some good remedies they mix up when they are having a flare that might help you. If it's BV you can take a probiotic for women, a good one is femdophilis which is great for balancing the good flora down there and hopefully stopping the BV from coming back. Best of luck!

    Comment


    • #3
      I sincerely hope you will feel more comfortable about your diagnosis after you talk with your doctor. I encourage you to take a note with your written questions so you won't forget to ask any of them. And it's okay to jot down responses while talking with the doctor. Not everyone with IC has the same symptoms, which is one of the reasons it can be difficult to diagnose unless you had a hydrodistention (sometimes called over-distention).

      Warm hugs,
      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


      • #4
        I think its really good you are having this meeting tomorrow with the doctor. This is what should have been done in the first place, not some second hand person giving you the diagnosis over the phone. I think thats awful and maybe you should find a new doctor based on that alone. At the end of my tests my doctor sat down with me and explained what he thought and why. Medicine is not an exact science in the least bit, it is more about exclusions, ruling out what they know you don't have. Its alright for you to ask for how this diagnosis has come about, what proof is there? If the nurse is saying it was from the cytoscopy then perhaps the hydro (overextension) was in fact done and the doctor could see physical evidence. If that's true then the diagnosis would be pretty definitive. My point though is you certainly have the right to ask how do you know its not A or B or C. Its his job to explain it to you in simple but convincing terms.

        Also, like Donna said write down questions and ask them. Also, find out what his treatment plan consists of exactly.

        Also, just so you know, (and not to make you feel bad) you CAN have IC without frequency or urgency but severe pain. Post the question here, maybe you will get some responses. I just know I have seen other people who have your same symptoms here.

        So good luck tomorrow and let us know how it goes.
        Cindi


        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: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          Ask for copies of all your records. You have a right to have them and it is a good idea with a chronic condition to keep a copy of all your records on hand. Dr's notes, test results etc. Ask him to go over all of them with you. If you have made an appointment for that purpose there should be plenty of time to do so. I hope you get the answers/explanations you are looking for.
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            Understand, and anyone can correct me if I'm wrong, but within the hour you take an antibiotic, your UA will not be accurate. Usually true with bloodwork as well, that I know for sure.

            Hope you are taking someone with you to your appt. Write down ALL of your questions and concerns tonight and take them with you and ask each and every one. If you get poo-pooed for asking so much, move on. Do not ever let any doc or nurse put you down for being an informed consumer. You are the one paying them, you are basically their employer. Empower yourself, but of course be nice about it. Honey attracts more bees than vinegar. Just make it known you are not a dumb bunny and they cannot do anything they want. If they suggest something you have questions about they can't answer, it is very easy to just say I have to do some research on this, I'll get back to you in a couple of days. Be strong, but diplomatic and polite, they will respect you for it.

            Try to stick with the diet, glad you have eliminated some of the proven no-nos. The diet on this site is excellent, and to confirm it just google acidic/alkaline foods. The major thing we have found is to stay away from anything acidic, and add in more alkaline foods. It does help a lot. And anyone who tells you cranberry is the answer, just say you're allergic to it (kinda true). As far as dealing with family, it is tough, most here will agree trying to explain this is difficult.

            It is sometimes easier to say you have developed allergies to acidic foods and beverages (not really untrue either) and it will take a lot of time to find the right doc, meds, etc. and that when these things go through your system they cause you great pain. (true). It has helped us, people think you can just take an AB or other drug and it goes away. That's the part they don't get. There are a lot of diseases out there that you can't pop a pill for and be all better, and IC is one of them.

            So glad you are having the meeting with the doc, and please let everyone know how you make out. Go in not angry, but informed. You'd be surprised at the different reaction you get. Good luck girl. Jill, wife of Bob

            Comment


            • #7
              i really wanted this appointment to happen today but my ride had other plans and i was in too much pain to go. i cancelled based on the pain not because of my ride cuz i coulda drove myself there if i had to.im wondering if next time i go i could just get my records from the nurse before she does the dmso.the dr is not there on the day i go in for the dmso he is only in office tues and thursday or ask them to mail my records.i may just have to try to figure this out on my own and give them 6mos-1yr if im not feeling any better find a new dr. they are treating me for IC i just hope theyre right.elmiron and instillations now...
              Newly IC diagnosed as of February 2011.

              Medications I'm on that seem to work:
              Zoloft- one once a day
              Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

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

              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
              AROMATHERAPY-candles,incense
              Village Naturals Aches and Pains Peppermint Bath Salts
              Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

              ACUPUNCTURE/HERBS
              Significant pain relief so far.

              MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

              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.

              Comment


              • #8
                Hey, too bad you were in too much pain to go.
                There is no reason why the nurse can't tell you what that cystoscopy showed since the doctor made his diagnosis based on it. You can ask her what it showed...bleeding, ulcers, etc. There should be notes right there in your chart.
                Hope you feel better soon.
                Cindi


                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: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  cmclien is right. When my doc performed the hydro w/cystoscopy he actually took pictures for me. He circled the suspicious spots on the photos and made notations for me. There is no reason you should not be ale to get something similar from your doctor.

                  Comment

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