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  • Newly diagnosed and feeling overwhelmed

    Hi,

    I am new here. I was just diagnosed with IC on Thursday and am feeling completely overwhelmed. I have been feeling bad for over a month and my uro came to the conclusion Thursday that I have IC. Right now I am on Enablex and it helps a little, but right now I am having some really bad spasms and burning. I use a heating pad alot and thermacare pads at work. I have been hanging in there, but don't feel like I have been doing a very good job at it.

    How did everybody get by at first? I people tell me that "well at least it isn't cancer" and "that isn't that bad of news". It isn't great news, its good to know what is wrong, but to be told your going to have this forever doesn't exactly make me want to get up and dance. I guess I just need advice, encouragment, wisdom from you more experienced people cause right now I just feel bummed about the whole thing.

    Thanks

  • #2
    Oh Missy I'm so sorry that you have to go through this. I know that I was really depressed when my gyn first brought up IC. I was so upset to think that I had another chronic problem that had no cure (I also have endo). It took me some time to adjust but I came to terms with it and I'm sure you will too.
    Did your uron prescribe anything else for you. If he didn't give you anything for the burning I would suggest that you get some AZO. It's an over the counter med that you can get to help with bladder pain. It turns your urine orange and it does help with that burning feeling. You're not supposed to take it long term though so I would check with your uro if you have burning alot to see if he wants to prescribe something for you that will help and is safer to take long term.
    I would also suggest that you up your water intake if you're not taking at least the 8-10 glasses a day that you should be then start there, alot of us drink more than that. I find if I'm burning, drinking lots and lots of water helps to dilute my urine so it burns less. I probably drink at least 100 oz a day but probably more.
    I would also suggest that you check out the IC diet which is available in the patient handbook http://www.ic-network.com/handbook/diet.html
    A lot of people find they get their symptoms under control a lot by figuring out what their triggers are and food is a trigger for most as well as stress.
    Anyway, I think I gave you enough info for your first post. to the IC network, you'll find a lot of help and support here.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Hey! Welcome to the club. IC is really tough to deal with a lot of the time, especially when you have people around you down playing it. No, its not cancer and you aren't going to die from it, but it is really hard to live with a rare disorder that no one but those of us who have it understand. I got so tired of people telling me to drink less or to hold it. Yeah, like that'll really help. At least here we all understand exactly what you're going through. For me, the diet really helped my symptoms, also I became very proactive about my health and just keep trucking from uro to uro to find something that would work. My uro put me on Elavil and Elmiron last year and it helped tremendously. I have very few flares now. Last year the pain and frequency was almost unbearable. I don't think I had a single day where I felt "normal". Just remember that there is hope and you will get better, it just may take a little (or a lot) of trial and error. Coming on here helps too. We're always here to listen and try to help.

      Comment


      • #4
        Living with IC is not so bad if you don't have pain. I hope you find treatment that helps.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas
        Louann

        Comment


        • #5
          antihistamines

          Missy Blue,

          Antihistamines have been my greatest fix. My bladder flares up every spring with all the pollen and stuff in the air. The antihistamines help reduce the amount of inflammation inside of the bladder. If you know for sure you have allergies, you will most likely benefit from antihistamines. I take 4 different ones during the spring! Each one targets a different aspect of the inflammation process.

          Recently I started taking the Neurontin for the "nerve pain" element of IC. Omgsh! It has helped soooo much, I wish I would have started it sooner.

          Another recent discovery is Lidocaine patches---12 hours on, 12 hours off.

          If you are in a lot of pain, ask your doctor for pain relief---i mean narcotics----such as vicodin, percocet, etc. This is another thing I wish I had done sooner. I didn't want to look like a "drug seeker" so I didn't ask until a few months ago. I only use them when it REALLY hurts though, as I don't want to become addicted. Vicodin works for me at a pretty low dose. It doesn't make me spacey or loopy or anything. It just helps with the pain.

          If the pain is such that I can't sleep, I find that Temazepam (a sleeping pill) helps me get there.

          Up until about 6 months ago I had myself convinced that I wasn't "diet sensitive." Unfortunately though I am. Once I cut out coffee, tea, & soda ENTIRELY I felt better. I wasn't even having much of them. Usually one of the three per day. But I've realized even a little wasn't okay. If you keep detailed records you will be able to figure out what foods irritate your bladder. Start with the list on the ICN.

          I miss coffee SOOOO much and unfortunately the herbal coffees and stuff like Cafix give me a flare too.

          A lot of people say that once you know it's a trigger you won't want it anymore-------ummmm NOT ME!!! I desperately miss coffee, yogurt, spices, edemame, FRUIT, FRUIT, FRUIT, sigh..........

          There are so many medications and therapies that can help you. I hope you find a good doctor who takes you and your pain seriously. If they don't---then don't go back to them. Find someone who will listen.

          Before I was diagnosed with IC I secretly wished and prayed for cancer. I was at my wit's end. I though, "Please God, either cure it or let me die." I kinda felt like cancer was either curable or fatal, and that's what I wanted---one or the other. IC to me was the worst diagnosis possible. But I have learned that it can be managed. And now I have a lot more good days than bad.
          Lee Ann
          Current Rx Meds:
          Atarax, Ditropan, Elmiron
          Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
          Hooray for babies!
          Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
          Didn't work for me:
          Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
          IC (Mod-Severe) since 1996

          UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


          My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

          Comment


          • #6
            Lee Ann

            That is exactly how I have been feeling. I have pretty much gotten over my daily depression pity parties I was throwing myself. I have also found that it helps to talk with those closest to you. I had a blow up with my husband the other day, but it could have been prevented if I would have just communicated better with him about how I was feeling and what my concerns are. I am still struggling with feeling better, but I at least have some days where I do not think it is that bad. My main problem is burning. It is driving me crazy. I am considering calling my uro and asking for something that could help that.
            Diagnosed with IC - March 2007
            Diagnosed with vulvodynia - June 2007
            -Lots of prayer
            -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
            -Taking Prelief as needed (stopped because of pregnancy)
            -IC diet

            Comment


            • #7
              Well it sounds like these girls gave some great advise so I will just say welcome and if you need anything just let us know

              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


              • #8
                Sorry you have Ic but glad you found this site.You were very lucky to get such a quick Dio ! It took me 2 years in ER's & Doc appt. Same as alot of the other's here.I find it good new's that you got Dio so quick. Hope you will find some relief soon, keep a journal on your pain day's and cycle, Also what foods you eat as well.Have you gone into the IC hand book yet!
                We are all here together !
                Hugs Sandra
                "Never Give Up."

                To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                My Photobucket Link:
                http://s237.photobucket.com/albums/f...ramack_photos/

                Comment


                • #9
                  Originally posted by KristiV View Post
                  It is driving me crazy. I am considering calling my uro and asking for something that could help that.
                  Please call. If he cares he will help. If you don't call he won't know. My urogynecologist told me to call about everything. I do.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

                  Comment


                  • #10
                    Hi WELCOME!!!!

                    Well I wont lie to you its really hard at first because its the shock and anger of been told you have IC with is overwhelming! I was diagnosed two years ago and I still get upset now but I learn to live with it in time as you become stronger!

                    I would recommned getting the welcome pack on here to help you and doing a bit of research on IC. I think its important to know that this will not rule your life you will just have to learn to control it but you are still the same person!

                    dont be frightened and ask any questions you need to

                    katex
                    Started with symptoms 2004 after a severe infection.
                    Was diagnosed with IC Feb 2006 after cystoscopy.
                    Diagnosed with vulvodyina and PN in july 2006.
                    Dignosed with ME and IBS Oct 2006.
                    Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                    Also doing IC diet and regular use of heat packs.
                    Still struggling with IC and controling my symptoms so looking for some help

                    also recently had abnormal pap, CIN III and just had LEEP done 2007

                    Comment


                    • #11
                      to the IC Network.

                      I absolutely agree that the diet is the first thing you should try. It can be a challenge at first, but it's the single thing that helps more ICers than any other thing I know of.

                      My IC was diagnosed 32 years ago and, if there's only one thing I can share it is to tell you that there is life with IC. It may take a while to find exactly which treatment options work best for you and which foods and drinks are a problem, but most of us do get there.

                      Sending well wishes,
                      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


                      • #12
                        Thanks, L. Thomas. I actually did call and leave a message today to see if I can get him to write me a script for Elavil and I was also going to ask about MSM gel.
                        Diagnosed with IC - March 2007
                        Diagnosed with vulvodynia - June 2007
                        -Lots of prayer
                        -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                        -Taking Prelief as needed (stopped because of pregnancy)
                        -IC diet

                        Comment


                        • #13
                          I will just add my to everyone else's. You were lucky that you received a quick dx. It took me around 5 years and 4 doctors (and LOTS OF tests of procedures) to figure out what was wrong with me. It now has been over 15 years and I do pretty well, I'm not as diet sensitive as a lot of people, (I do watch what I eat though) take my medications, Elmiron, which I've been on it since 1997- no side effects!! Effexor (originally started it for hot flashes but found out it helps with bladder pain), pyridium as needed and pain medicine as needed. I also have hydro's done every 6 months or so when the pain gets really bad. I have raised 2 children to be really great young men. I work full time, haven't had to miss too much work, except for when kids were ill; and for doctors appointments.
                          Anyway, good luck, if you need anything, we're always here to help.

                          Comment


                          • #14
                            Thanks to everybody!

                            Thank you for being so supportive and friendly. I was so upset the other day I really didn't properly introduce myself.

                            My name is Melissa, I am 28, married and have a 5 year old son. We live just outside of Memphis so I have alot choices for doctors if I need to switch. I think one of my biggest upsets is that I am so busy, I don't have time to be sick. I work full time and am starting my master's program. It is tough to try and clean the house and do everything else when you feel good let alone feeling crappy. My husband tries to help out as much as he can, he did before so he is okay with helping a little extra. I feel bad for him because he wants to try to fix things and he can't fix this, it makes him feel bad to see me in pain. Since this is new for me, I still feel really guilty of just being sick. I know it is not my fault, but how are you suppose to be a good wife and mom if you are sick and in pain.

                            Like I said before right now I am on Enablex (15mg) a day and they put me on UAP- it is like pyridium, but makes your pee kinda blue. I had this problem about 3 years ago, but I went on Detrol and felt great, so the doctor thought I had OAB. I went off the Detrol after about a year and had a few times when my bladder freaked, but didn't think much of it. They were really short lived and I didn't feel that bad, just had to pee alot. So when I started to feel bad a month ago, I figured OAB. Went in and got Detrol and had a really bad reaction to it. I was crying at work and doubled over it hurt so bad. Went back to the dr and he tried Enablex and said come back in 2 weeks. When I told him that I felt a little better, but still had pain, frequency, he was pretty much convinced that I have IC. He said he really didn't need to do the cysto thing to confirm, he figured I was hurting enough. He just said I had all the criteria for it and we would work through it. I can't take the pyridium that makes your pee turn orange cause it makes my bladder feel worse, like ten times on fire. I have kidney stones too, so that makes things worse as well. I already knew my uro pretty good because I have been in and out of there a bunch with kidney stone problems. Right now I don't have any insurance so I am worried about that too. I don't want to put us in the poor house by me being ill. Sigh...

                            Anyways, thank you all for being so friendly. I have had trouble with this whole diagnosis b/c I am such a private person I don't have alot of support. I haven't told anyone at work, just a few family members (some that were the at least you don't have cancer responders). Well I am sure I will have questions and fears , but I am glad to know I have support.

                            Comment


                            • #15
                              missy_blue7,

                              I'm sorry you have IC. If you look through Newly Diagnosed, I posted about "how do you cope". The responses were outstanding! I was diagnosed about 6 weeks ago. I am having a very hard time with the diet. I can't cook anything but eggs or cookies. I have a friend that is going to give me some cooking tips and when my dad comes to visit me he'll give me some more cooking lessons! I don't have a big support system here because my family is in a different state, but I'm trying to reach out online and to my friends here. When I'm alone, I'm trying to cry to let it all out. It's hard. The hardest part is that I am house bound most days. I am either too tired, feel terrible, or the urgency/frequency is so bad I can't go anywhere. I was asked how I'm not depressed (my family understands just how bad this disease thankfully). I said I'm more frustrated and angry... but I'm moving from that stage to the mourning, cry, depressed stage. I know if I can just get out more. Exercise. Visit with friends, I will feel better emotionally. I just have to pray that I improve enough that I can start to live again. Being bound to my bed or recliner or toilet is tearing me apart.

                              I just wanted to say all that so you know that you're not alone. I have moved on from the anger stage to a sad stage (while I was in shock/mixed feelings for the first week or two). I think it is normal to mourn the normal we once had. I am hoping they caught my IC early so that treatment is effective. I will do everything I can to go into remission!
                              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                              [

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