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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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  • lbcharel
    replied
    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

    Leave a comment:


  • kendra&joe
    replied
    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

    Leave a comment:


  • lbcharel
    replied
    hopefull

    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

    Leave a comment:


  • lbcharel
    replied
    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

    Leave a comment:


  • Moonheart
    replied
    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,
    Moonheart

    Leave a comment:


  • Sarahrose
    replied
    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 pain..at 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

    Leave a comment:


  • Berkshire Road
    replied
    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.

    Leave a comment:


  • vm
    replied
    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.

    Leave a comment:


  • Sarahrose
    replied
    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

    Leave a comment:


  • ICKIRSTI
    replied
    Group Hug!! Pronto!!

    I am so sorry to hear of your pain. It really, really breaks my heart. Your pain IS very real to you, and to us all. No matter how much it may seem at times, you are not alone. Please don't ever let the doctors make you feel any less of yourself. If they were in your shoes they would understand! But they are not, so please I beg you not to let them get the best of you! Please, keep in mind, that while your friends on here can't necessarily take away your physical pain, we sure wish we could!! We are here for you and one another. Always! We are sooo blessed to have one another to share in our experiences! We gather so that we may breed light from even the darkest of moments. We can provide endless support, love, respect, faith, hope, and inspiration. Regarding all elements of the past, the present, and the future.
    I sense you are in deep mental despair from all of this. Which is totally normal, and expected. However, I am a very sensitive, not to mention, a very in-tuned empath. I became severely nauseous and extremely overwhelmed while reading your post. Moreso, than any post I've ever read before. A tremendous amount of conflict and pain is trapped in there, that eminates deep into my soul, straight from your own. I had to lie down for about 15 minutes. I even ran to the bathroom thinking I was going to get sick. YOUR PAIN IS VERY REAL!! Anyone, with any form of sense or sensitivity could and should confirm that.
    I highly recommend you speak with a professional about your thoughts and feelings, if you haven't already. Psychologists are great, during particularly troubling times, for they let us vent about virtually all things without passing judgment. (That is of course, so long as they don't feel you are a threat to yourself and others). They often, offer no insight that would sway your opinion of self (or should). They merely help us to find the solutions for all of the answers into which we both hide and seek. I just feel that there is only so much we can do for you, and that some additional support to help keep your spirit up would be extremely helpful and beneficial for you at this time. Even if you just go for the time being, or call when you feel you need to set up an appointment.
    Of course there, is the endless support to be found in this haven here! I hope that we are successful in helping you in any and every way possible that we know how! You are in my thoughts and and I wish for you all the best the world could ever offer.. and much, much, better days to come. Feel free to contact me anytime if you would like to talk. Please keep us informed as to how you are doing, because, we worry about you!! I know I DO!! Here is an to help you through..okay maybe to be safe.. here's another one too P.L.U.R. for all.. forever!! warmest regards,
    Kirsti Dare

    Leave a comment:


  • ICKIRSTI
    replied
    Group Hug!! Pronto!!

    I am so sorry to hear of your pain. It really, really breaks my heart. Your pain IS very real to you, and to us all. No matter how much it may seem at times, you are not alone. Please don't ever let the doctors make you feel any less of yourself. If they were in your shoes they would understand! But they are not, so please I beg you not to let them get the best of you! Please, keep in mind, that while your friends on here can't necessarily take away your physical pain, we sure wish we could!! We are here for you and one another. Always! We are sooo blessed to have one another to share in our experiences! We gather so that we may breed light from even the darkest of moments. We can provide endless support, love, respect, faith, hope, and inspiration. Regarding all elements of the past, the present, and the future.
    I sense you are in deep mental despair from all of this. Which is totally normal, and expected. However, I am a very sensitive, not to mention, a very in-tuned empath. I became severely nauseous and extremely overwhelmed while reading your post. Moreso, than any post I've ever read before. A tremendous amount of conflict and pain is trapped in there, that eminates deep into my soul, straight from your own. I had to lie down for about 15 minutes. I even ran to the bathroom thinking I was going to get sick. YOUR PAIN IS VERY REAL!! Anyone, with any form of sense or sensitivity could and should confirm that.
    I highly recommend you speak with a professional about your thoughts and feelings, if you haven't already. Psychologists are great, during particularly troubling times, for they let us vent about virtually all things without passing judgment. (That is of course, so long as they don't feel you are a threat to yourself and others). They often, offer no insight that would sway your opinion of self (or should). They merely help us to find the solutions for all of the answers into which we both hide and seek. I just feel that there is only so much we can do for you, and that some additional support to help keep your spirit up would be extremely helpful and beneficial for you at this time. Even if you just go for the time being, or call when you feel you need to set up an appointment.
    Of course there, is the endless support to be found in this haven here! I hope that we are successful in helping you in any and every way possible that we know how! You are in my thoughts and and I wish for you all the best the world could ever offer.. and much, much, better days to come. Feel free to contact me anytime if you would like to talk. Please keep us informed as to how you are doing, because, we worry about you!! I know I DO!! Here is an to help you through..okay maybe to be safe.. here's another one too P.L.U.R. for all.. forever!! warmest regards,
    Kirsti Dare

    Leave a comment:


  • ICNDonna
    replied
    I'm very sorry you are so miserable and hope you get some relief soon.

    There are some things you can do to help you when you go to an appointment with a physician. First of all, write down your questions so you won't forget to ask them --- when we're nervous it's very easy to come away from an appointment without answers.

    Another thing you can do is to do a pain and voiding diary so your doctor can see how bad your pain is.

    Are you following an IC diet? That can be very important in helping control pain.

    And I think it would be a very good idea for you to see a professional counselor to help you overcome your fear of doctors --- those of us with IC need our docs desperately and we also need to be able to communicate with them.

    Sending warm well wishes,
    Donna

    Leave a comment:


  • evanseri
    replied
    So sorry to read that you are in pain. I have been there! Don't lose hope you will feel better someday soon. Just remember that you are now among friends and people who truely understand, so things are already starting to perk up.
    Good luck and remember...this too shall pass.
    Erin

    Leave a comment:


  • RobinD
    replied
    Sarah, I are you from Missouri, PM me and tell me where in Missouri? I have ulcerative colitius and if you are in my area, maybe you could see my wonderful doctor. My IC doctor is pretty good too, since he is the one that finally diagnosed me.

    Let me know so maybe I can help

    Robin

    Leave a comment:


  • Zygala87
    replied
    Hello Sarah. I am so happy you have found this site. Are you on the IC diet? Do you take elmiron? I felt like you were feeling when I first came down with IC. After a Hydordistention and being careful about diet and stopped smoking I now have many more good days then bad. That is just my story. We all are so different. One thing in common is the many great people on this site. They all care and understand. Hugs, Ziggy

    Leave a comment:

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