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Hello I'm new but old to IC I m alone in this and needing friends that can relate...

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  • #16
    thank you so much

    I have tried most everything,hydrodistentions they made my bladder stay huge they made me have a full bladder to where it wouldent let any pee come out 12oo cc of pee drained out then thye blood clots would clog an I had to have them removed more sergry the last 3 years I have had 32 yes 32 sergerys I took elmonron I had thick hair now I have bald spots my hair was comming out in chunks..Ive tried instlations the tube has to be forsed in blood clots again more sergerys to unclog it...ouch you see I am the one that cant be helped {for now} even my nerves are open and exposed..I wish I could explain everything but It will take me along time Ive tried tons of meds..I can live with the ic but not the pain I cant get away from it the fire I get relelif for a cupple if hours but then it creepes up again the constent bathroom trips..the pain ic diet well some things trigger more pain for me stress, stress my current providers are soooooooooooooooo mean I go to a clinic they are mean a few are nice but most mean I litterly get so stressed before I go that I cry for 3 days before..I know I sound weak but trust me it has taken me years of suffering to get to this point...I dont know how to talk to you privatly sorry I live in grain valley mo but I have state aid insurance not that im a bum I can work MY husband has lost 10-15 jobs caring for me i hug each one of you for your concern I have felt like no one cares for a long time you are true angles


    • #17
      To send someone a private message click on their name. When you click their name that will drop down a menu and one of your choices is: "Send a private message to ______". Click that to send them a PM (Private Message).

      Then when you receive a private message you will look up in the right hand corner of your screen and underneath the "Welcome, Sarahrose" is a link that reads Private Messages. Clicking that link will take you to your private message inbox.

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


      • #18
        The clearest thing that's coming out of your posts is that you need better pain management. A lot of IC'ers are on a long-lasting narcotic with break-through meds if needed. Pain in the back or sides can often be helped by lidocaine transdermal patches. They are prescription only, but most doctors will prescribe them. It sends an anesthetic straight through your skin and numbs the area. It can't go all the way into the bladder, but it can help back pain SO much. If you haven't been offered, ASK. They are called lidoderm.

        Many patients who have "burning" type pain find that putting an ice pack, even just a frozen water bottle, between the legs, can also help a lot. You should definitely give that a try.

        Since you are SO stressed, you must be very tense. A muscle relaxant can help keep you from clenching up around the painful areas and making the pain worse. Are you getting anything like that from your doctors? Again, if not, ASK. We have to advocate for ourselves. I've also gotten counseling to help me learn to relax through the pain, and just to deal with the general horror of long-term illnesses.

        So, that's what I think. You need to deal with your main symptom, PAIN, before you will be able to think straight and maybe find a way to get help. Do you have to go to the clinic that you go to? If so, when you make an appointment, can you specifically say, "I would like to see Dr. so and so?" Maybe you can stay away from the mean doctors.

        Sad to say, a lot of women find that their doctors treat them better if they have a man with them at the appointment. Is it possible for your husband to go with you? I know it's stupid but it does seem to make a difference.

        I think it would help a lot of us if you could list the medications that you are on now, so we can share our own experiences with them and maybe offer some other suggestions. Could you do that?

        I know you are in a place where you feel like nothing can help you, but it's not true. There is no cure but surely you can get better control over the pain. If you are looking at each suggestion and thinking, "Can't do that, that won't work, etc.," that's a sign of depression. Are you taking any medicine for depression?

        I hope you'll write back with responses to these suggestions and answers to the questions. Everyone wants to help you, but we can do it best if we have a clearer idea of what's going on.

        I am keeping you in my thoughts. Hold on, honey, things have to get better eventually.
        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


        • #19
          Thank you guys so much for all your help and advice I have good news

          Dear new friends, I have great news I am not in the moment I got pain meds whoooohooooo..I tried again (pain management) that is I got the strenth to try again...You see when I first got sick my bladder just broke..I was like a baby no control..I just drizzled within a few hours I was in screamming pain I labored my 4th child at home w/0 meds and I was screamming ...tons of tests nothing I thought I was going yo die and wishing it would come quick .. weeks turned into months I was in and out of the hospital seeing tons of doctors, they were giving me that look and tons of wispers cut off pain meds I was back begging telling them if the didnt find it I would die (from the pain I mean) I was begging my husband was begging and criing to them they did a uro dinamanics test I came off the table ...I past out from the pain they ordered a systascope and found it..I was given oxy 80's 3xs a day I took 2 I couldent even wake up I begain pain management my doc was a witch soo mean and dirgrating cut my meds even tried to tell my docs that I was a lier I gave up I couldent take the pain I was helpless I was trying elmron instalations but I had to have sergery to remove blood clots from them they said this is how your life will be this is it we can't help you I gave up (I was removed from pain management all the way my doc's said we will do your pain management ok we will take care of you last july med tronics came by and more hell started I got the interstem 1 week later my docs said this controls your pain cut my pain meds 80% the day I got it I was calling begging they said NO you no longer have pain the Tens takes it away I felt crazy I kept feeling bad like one nurse told the tens rep I had no pain I have never called to have it recalulated I was so immbarrased I kept feeling like I was bad because I couldent control my pain they would snicker every two weeks and tell me I needed to get usto the pain I felt worse and worse like I was bad because I needed meds and what they gave me was not enough I had control and I was bad because I needed more...more pain more fire and I'm crazy the same doctors that treated me so good and were telling me I was crazy the tens worked the pains in my head now..well because I went to a pain doctor (advice from yall) I got pain meds and I am at 0000on the pain scale right now and balling so happy happy to have releaf and happy to have someone that listens to me thank you all so much..I know this is just the begining to my reclaming my life but I feel hope thank you thank you and thank god this all came in just the nick of time .....I was so hopeless...thank you I have hope and thank new doc for listening to me


          • #20
            oh Praise the Lord hon. I know what a tremendous relief this must be! I'm so happy you are feeling so much better now. Hopefully this will continue and you can relax and have a normal life.

            God bless,


            • #21
              Hi I have had IC for 10 years at least I thought it was in my head until I found a great DR,Im in a bad flare now have been for a week Im on Elmiron and sab-opium and oxy for pain and every 3 months I have dmso treatments at the hosp I know how you feel sorry you have so many other things I jsut started this caht thing a few days ago feels good Im not the only one dont wi**** on anyone you take care hang in there we are all trying to hang in there hard one


              • #22

                Originally posted by lbcharel View Post
                Hi I have had IC for 10 years at least I thought it was in my head until I found a great DR,Im in a bad flare now have been for a week Im on Elmiron and sab-opium and oxy for pain and every 3 months I have dmso treatments at the hosp I know how you feel sorry you have so many other things I jsut started this caht thing a few days ago feels good Im not the only one dont wi**** on anyone you take care hang in there we are all trying to hang in there hard one
                sorry for all the mistakes not good today either take care


                • #23
                  Hi I'm Kendra

                  I can relate to doctors reactions. had one surgen tell me that I was an addict, his father had had same surgery{never heard of a man having an ovary full of cysts removed , go figure, I also had my appendix removed then to even though that's not what they went in to do. I left his office and went to family doc and he ask why my stomache was so swollen and sent to hos. turns out that surgen left 2 bleeders in me and done what is suspose to take2 hours in 45 min.s. Ironicly a couple of years later later he got his arm: right one: cut off in an accident , it was like poetic justice to me and I am not usually that way. I just wanted you are not the only one who dislikes doc.s and especially new ones they make me flare too. My new family doc wants me to see new uro. haven't had to make appt. yet, think I'll wait til after vacation. you are not alone, and you can contact me any time except next week 9=13 th cuz of vacation I am a good listener and need IC friends take care
                  HUGS & PRAYERS KENDRA
                  NEWLY ADDED:


                  • #24
                    Hi thanks for the email yes its great that there are others that have the same that we all can come too,,still in a flare in bed with a heating bag this time is taking for ever to feel good my Dr is a good one but they can only do so much take care