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    i am no exactly newly diagnosed, i learned i had ic in october of last year. i had just started my freshman year of college and all this pain suddenly hit me one day. i had to go to 10 doctors before figuring out what was wrong with me. so now here i am in pain every single day. it is like i am in a constant flare that never goes away. i had to take medical leave for the whole year in school and i cannot work. i hardly ver leave my house at all do to the pain and the pain meds i am on. this is really hard on me because i am only 18 and no one should have to live there life this way. everyone in my family does not understand. they think i am just being dramatic and the pain is not really that bad. my mom is always saying she hates that i am in pain, she is determined she is going to find a quick fix even though i keep telling her she wont. she keeps telling me that my pain isnt that bad and i go to go out and get my mind off of being in pain. what she doesnt understand is the pain is too bad to go out and do anything. i feel like no one believes me, everyone thinks i am just making this up. it is so depressing because i feel like i have no one on my side. i just really needed to get this off my chest so i figured i would right it. does anyone else have these problems? i don't know what to do because i need my mom to be there for me and help me out but she thinks its not as bad as it really is. i just do not know what to do. if anyone is on tonight and wants to chat or feels the same way please write. thanks
    Life is like a box of chocolates, you never know what your gonna get!!

    Kirstie

  • #2
    HI Kirstiexanne,
    I do know what you mean. I was 35 when I got IC, but it was a sudden onset like yours, I also went to a bunch of doctors before I was diagnosed, and also had trouble in the beginning with my family understanding how serious IC is. A neighbor gave my mom a copy of "The IC Survival Guide" & that helped a lot.

    It's a lot to deal with especially in the first few years. What treatments are you on? Have you tried the diet? At the top of this page there's a link to the Patient Handbook, which has articles on diet, treatments, lifestyle & how to handle flares. If you haven't seen it yet, it's worth checking out.

    I was very sick for two years before my doctors & I figured out the treatment plan that I'm on now & that is working well for me.

    I think what I'm trying to say is that it is possible to be pretty sick & still get well again, with diet and working with your doctors to create a plan. Hang in there. We are here for you!
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      It is hard to deal, isn't it. I have had IC since I was just 8 years old (but I was not diagnosed until I was 29). The symptoms would come and go a lot back then, and I didn't have much pain until the later years, but I do remember times when I had to urinate all the time. When it happened, my parents would just make fun of me (calling me a puppy who had to pee on everything to mark territory) and tell me that it was in my head back then.

      However, I had my first pain flare at 29 when I was at their home in Massachusetts for Christmas. By that time I was married and had been on my own for years. This time, they took it very seriously, because they could see the discomfort and sheer pain I was in. This was the flare that finally sent me to specialists when I got back home after the holidays; once I was diagnosed with a real condition that they could research and read about (hubby and I sent them a copy of the IC Survival Guide), there was no more teasing, I'll tell you that. Since that time, they have been nothing but supportive.

      I also have my husband, of course, who is very supportive.

      Anyway, Kadi is right. Have you checked out our handbook? It's really great -- you may find treatment ideas you have not tried yet, and one of those could be your "magic bullet", the one thing that helps you most. While you are there, check out the sections on IC itself, and maybe print them out if possible. If you can, order the IC Survival Guide by Robert Moldwin. Show it to your parents -- perhaps it will help them understand what you are going through like it did for me, and for Kadi.

      ****
      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


      • #4
        Kirtsie, Let me first give you a hug ..
        I am so sorry you are having to go through this starting at a young age..
        And I know how you feel about everyone just thinking its all in your head.

        Alot of family and friends of mine just think I am making this up, because IC is not really a Known disease to alot of people, I wish it was better known so people would understand what we deal with everyday..


        Now about your pain,
        Are you on any meds besides pain pills? There are things out there that can help with the pain besides pain pills also if you follow the IC diet I have found this really seems to help..


        Now your depression...This is something you should tell your dr about immediately you should not let it go untreated, because if you are depressed that will put stress on your body and make your IC a lot worse, so please tell your doctor how you feel...

        If you need anything just let me know, Hope this helps, and PLEASE know you are not alone in this fight, we are all here for you.....
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


        • #5
          Kirtisie, I am sending big hugs to you. If you haven't already, you might want to print out information about IC and let your mom read it. Maybe this will help your mom understand it better. Don't worry about having to write us and getting it off your chest, we all do this from time to time. Hope you get feeling better soon.

          Trishann

          Comment


          • #6
            I have a slightly different thought on the depression issue than Ronda.

            It sounds from your email that you still have treatment options not tried yet & your pain is not being managed sufficiently. From what you have said, you have reasons to be sad & upset - you need medical treatment for your medical condition & understanding from the people you love!

            I would go to your doctor (and perhaps another urologist for a second opinion), make sure they understand the extent of your physical symptoms, and strive for understanding of that & sufficient medical treatment. If even after you've had improvement, you are depressed (and I mean medical symptoms of depression: over/undersleeping for reasons not related to urination, difficulty enjoying things you used to, mood you cannot influence, etc.), then it's an okay thing to bring up to your doctor.

            I am just concerned that if you go into a doctor's office & say that you are depressed, they will focus on that & not on your IC. And once you get depression or antidepressants* in your medical records, it becomes an easy way out for doctors who are in a hurry or don't want the hard work of partnering with IC patients to find the right treatment combination.

            I am in no way saying that depression is not real or does not require treatment. BUT: I am saying that the emotions you mentioned seem related & valid to what you are going through medically/physically & it could be that once you have some relief from the IC, you will be fine.

            *NOTE: Elavil is a tricyclic antidepressant often given to IC patients because it helps with pain & frequency. It is prescribed for us at dosages way below the antidepressant dose & is worth a try if it's offered by your doctor. It's one of the most effective medicines for us & it's helped me very much!

            Sending a hug & wishing you better days soon!
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              Oh, I do understand. It took me nine years to get the right diagnosis, and the pain was completely overwhelming. And I absolutely know my mother doesn't really understand. She keeps telling me that I just need to do a little more each day, and before I know I'll be all better! As if I were recovering from some sort of virus and could just throw it off. I don't even live with her anymore and I have a family of my own, but I still need her emotional support. You should certainly try printing out material on IC and giving it to her to read.

              You say you finally got a diagnosis, but you don't say what treatments are being tried. IC can take a lot of experimentation with different combinations of therapies, because we all respond differently. So I hope you're in touch with your urologist often, and if you're not, get a new urologist.

              Eighteen is a hard age for anyone, and IC just makes it worse. You're supposed to be an adult, but you may still be financially dependent on your parents, which makes them think the can still make all your decisions for you. Right? But you are legally an adult and you don't need your mom's permission to schedule another DR. appt. and to speak to that doctor in private. But you need your mom's help in general, so it would be best to allow her in for at least some of it.

              I don't know what else to say except, you're always welcome to come here to vent, to ask for support, or just to plain old vent. We're here for you, and we do understand.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                I certainly have the utmost in compassion for you. If this had happened to me when I started college, I have no idea how that would have affected me. Those times were so stressful on their own.
                At the risk of sounding like a parrot here, I don't know that anyone on here can stress the diet enough. It definitely seems overwhelming at first, especially since there's no definite end in sight and no telling exactly what affects you now or how bad. I can say though, that it's made a huge difference for me in just a couple of weeks, and I honestly have been a little bit more permissive than is probably advisable. With the severity of your symptoms and the negative impact it's had on your quality of life, it's definitely worth a shot.

                Comment


                • #9
                  I would also recommend finding a doctor who will test your estrogen & progesterone. Your hormones can play a vital part in getting this & other conditions under control, I'm living proof

                  [FONT="Comic Sans MS"]
                  Jen
                  Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

                  Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!

                  http://www.icawareness.com/stories.html

                  Jen Meier Cascaddan on Facebook

                  Married for 21 years, have 2 cats that are my "boys"

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