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  • #1

    Hi, newly diagnosed...

    Hello, everyone. My name is Lori and I was diagnosed with IC a few weeks ago. I've had symptoms for a very long time, but I always assumed they were associated with my lupus.

    I recently went to a uro/gyno on my own after getting nowhere with my family doctor. I have a great uro/gynocologist, and I am really thankful for that. He is up on all the latest research and is fantastic, this is what he does and this is his specialty. He performed a bladder hydrodistension, and the pics are horrible. He said that mine is the worst case of IC that he has seen in years.

    I am currently receiving daily irrigations of a mix of heparin, lidocaine, elmiron, and something else. Orally I am taking Vicodin, Elmiron, Atarax, Lyrica, Cymbalta, homeopathic cantharis and homeopathic belladonna, and pyridium. I am using b&o suppositories for the bladder spasms, and am also applying lidocaine jelly.

    I also have a stage 2 cystocele and a stage 2 rectocele that can't be repaired until we get the IC under control.

    I am in a ton of pain, I can't even wrap my brain around the level of almost constant pain.

    What have you found that works? I am adjusting my diet and have ordered some books that I hope will provide some information. I am exhausted and fuzzy from the meds, and really so uncomfortable. What should my next step be? I can't wait to chat with you all and hear your stories...I feel pretty alone in this whole thing. My hubby and kids are kind of over it I think...they just want me to be better already. Me too...

    Lori
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  • #2
    to the IC Network. I'm glad you found us.

    One thing you didn't mention is diet. Are you following an IC diet? If not, I suggest you begin today. You'll find the link to the latest food list in my signature below.

    I hope you feel better soon. I've had both cystocele and rectocele repairs and that did help with symptoms.

    Sending 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

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    • #3
      Hi, Donna. Yes, I am dramatically adjusting my diet. The doc gave me a list of foods to increase and foods to avoid. He gave me so many pamphlets and actually gave me this website address.

      I am really nauseus, so I am not eating much. Relying on skim milk and rice chex and ginger cookies. Pretty bland right now. Maybe I will lose some weight through this whole thing...

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      • #4
        Hi Lori,

        Sounds like you got a good doctor who really cares, that's important. Re: diet, I've been eating gluten-free pancakes a lot lately because I have no appetite and it's one of the few things that don't bother my bladder.

        I know what you mean about pain...I was in horrendous pain for weeks, popping Vicodin and just trying to get on with life.

        Other supplements you might consider is marshmallow root tea and slippery elm. They're harmless demulcent herbs, meaning they're soothing.

        Good luck!
        Dg. with IC 2/15/10

        Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

        Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

        Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

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        • #5
          Hello all guy's here at the forum,
          Me joining newly here at the forum and wanna say HI to all the member's of the forum. Me wanted to have some friends at the board and have some discussion's about the topics here at the forum........
          East bay personal trainer

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          • #6
            Ask any questions, we have walked some of your road & may be able to offer suggestions. You may find it useful to read in the pain management forum, here.

            I'm curious what foods your doc said to increase?
            ______
            Severe IC developed fairly quickly, autumn 2010.
            So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

            - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
            - Methadone 9 ml/day
            - Instillations:
            - 40ml Kenalog (steroid for inflammation) 2 x per
            week, along with rescue cocktail of heparin,
            lidocaine, sodium bicarbonate
            - 20ml Uracyst, monthly @ $100/per
            - Depo lupron injections for endometriosis, monthly @ $88/per

            Comment

            • #7
              Different Strokes for Different Folks!

              Hi Newly Diagnosed,
              I have had IC for a while now and understand how frustrating it can be. One thing I have found helpful to remember is that IC is different for everyone, so what may help one person may not help another. In my case dramatically adjusting my diet, starting the use of Prelief with every meal, and the use of a long acting narcotic and narcotic meds for breakthrough pain seem to work the best for me. I also am the recipient of a Medtronic neurostimulator and that has helped a lot too.
              At first following the diet and getting my pain under control helped the most. I was in so much pain for so long (because nobody knew what the bleep was wrong with me!) that I was at my wits end. After struggling for nearly a year to get doctors to understand, my whole life falling apart (no more job or law school), I found a great pain doctor who was willing to be both creative and sympathetic. Well he really turned my life around, I went from being depressed and bed bound to more active and pain free. The bland diet really helped in conjunction with several other treatments he recommended. I did see several uros but just generally did not like their approach and found I did not have satisfactory results with their treatments. So now I just see my pain doctor. I am happy to talk more about it if you would like to email or pm me. My approach has been a lot different than a lot of other patients on this board, but it works for me and makes me comfortable which I think is the key to feeling better. No solution works for everyone. This is a complex and devastating disease but it can be managed. I recommend trying the diet and getting your pain under control. If your uro will not prescribe the meds you need (which are meds that WORK for you) see another doctor and maybe a pain doc who specialize in getting your pain under control. Good Luck!

              Rochelle

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              • #8
                Hi Lori, sorry you are suffering. Also sorry you are not getting a lot of personal support from your family, but that is sometimes par for the course. They just think the medicine will take care of everything and you will be all better, and when you're not, they tend to back off and go into denial. Totally normal. Could your hub maybe go with you to an appt and have doc just give him a few minutes to explain? Also show him stuff here and elsewhere on the net, there are pictures and things that may help, men are visual animals after all. Don't be too upset about the reactions of others, as time goes by they will either get it or not. There is always support here. Do you have a good girlfriend you can maybe talk with, take to an appt. Even just one person is always better than none. Stick with the diet, try to have a really close relationship with your doc, it's sometimes a long trip to relief, but you will get there. Wish you much luck, please let everyone know how you are doing. Jill, wife of Bob

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