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  • #1

    re: feeling alone

    WEll.. hi all.. I am new here and just signed up. I am tired of sharing my feelings about my IC w/ friends and family theya re tired of hearing about it. I would be too i guess, but i need people around that KNOW how i feel.. My boyfriend doesn't understand and thinks i am lazy when i sleep thru the day.. (even though i was up all night trying to feel comfortable) I don't even work right now. I don't see how i could. I am on antidepressents right now and nothing else. All the doctors i talk to out here in Athol, MA think i am crazy and say there is nothing wrong w/ me. I am 29 now and I have seen ER's and docs for years and i think only one of them had it right.. i probably have IC. I notice food makes me feel worse.. I get infections also at least 5 times a year.. I never know when it is just feelings or a real thing so i buy the test strips now so i don't waste my no-patience, new doc's time. I know this isn't in my head. I'm not a hypochondriac.. sometimes i am very good tho, and am still in pain.. I don't think i deserve that.. I don't eat anything fun at all anymore and have reduced my drinks to mainly bland water.. but i am stil in pain.. what is this hydro thing everyone is putting up posts about?.. does it hurt?.. a simple pap smear makes me cry.. Between the migraines and the ic, i am at my ropes end.. i just ordered prelief.. will this stuff really help me?..anyone wanna talk, please.. email me or something! I go to chat rooms all the time, but there is never anyone in there when i am in pain..lol It's morning now, so i better try to sleep, I find a pillow between my legs sometiems relieves my pressure.,, or at least tricks my brain into thinking at least there is a reason for the pressure so it makes it a little better.. i don't know.. sorry this is so long.. i willl check back here soon.. Love all your stories, good and bad. Good luck to all going thru this..
    "..The more you know, the less you have to fear.."
    Tags: None
  • #2
    Welcome to the IC Network. You hve found a place where we do understand.

    Have you seen a urologist? If not, I suggest you do --- and if you have --- I suggest you see a different one. This is not in your head and never was.

    In our Patient Handbook you will find information about symptoms and diagnosis, including hydrodistention. You'll find it at http://www.ic-network.com./handbook

    Also, you'll find a list of physicians if you go to the Browse Our Site pull-down menu and follow the links.

    Sending an encouraging hug,
    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
      Welcome! hi First impression after reading your post: get a new doc!!!!!!!! lmao Seriously, we have some other ladies here from MA who see really good doctors who will affirm that it is NOT in your head and will do far more for you than just antidepressants. hopefully one of them will come along and tell you about their docs.

      Here is a link to info about the cystoscopy with hydrodistension:

      http://www.ic-network.com/handbook/dist.html

      I hope you'll stick around to enjoy the support you will find here. It's amazing and you won't have to feel alone anymore. kissing
      Kim

      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

      Comment

      • #4
        Hi Fracturedsoul,
        I wanted to welcome you to the boards!! I am not on here much because I work all the time now. There was time about 3 years ago that I had to quit my job, go to the pain clinic and have my heating pad attached to me at ALL times!! I have a great uro and we found stuff that works for me EVENTUALLY!!

        I am sorry you are feeling so bad. I wish you could find a good uro that knows about IC so they could work out a treatment plan that is right for you. There are plenty of options out there. I know you have seen from reading on the boards that the same thing doesn't help everyone unfortunately

        I am one that hydros help ALOT!! That is where they put you to sleep and fill your bladder with water and overdistend it and stretch it out. The first one hurt me because they took a biopsy to rule out bladder cancer. I have had 3 now and they hurt less and help more with each one. I figure I will prob have to have one a year but I am fortunate that they work! My dr said that IC bladders scar inside and the hydro stretches it out and breaks all the scar tissue loose thus in some it helps with the pain.

        Maybe someone on here lives in your area and can give you some names of a good uro. IF you can get one with your first try, you will be way ahead of the game.

        Hugs
        brianna

        Comment

        • #5
          Hi Fracturedsoul,
          I am new here too and while I am not officially diagnosed with IC yet I have many of the symptoms and am seeing doctors trying to figure out what's going on. I'm so glad I found this board; it's is a WONDERFUL place... and I'm glad YOU found it too. Keep talking, everyone here totally understands what you are going through. And it is NOT in your head.

          I wanted to reply to you too because I see you're from Athol... while I live in Memphis, TN now, I grew up right down the road from you in Gardner!!

          Keep in touch, and keep warm-- I hear it is absolutely FREEZING up there lately!!!
          ****
          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

          • #6
            Hi,
            I just wanted to add my welcome. I would also suggest a new Dr. When you find the right Dr. then you can get some treatment for whatever they find out is the problem. Hang in there and know that we are here for you.

            Jolene
            Jolene

            "Life is what happens when you are making other plans" John Lennon

            IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

            Information for Patients can be found here.
            http://www.ic-network.com/patientlinks.html


            Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




            Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

            "IC Angel 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

            • #7
              hi ~welcome~ you will find a wealth of info in the sight and there are a bunch of great people in here to talk to and to share there expereinces with.. keep posting
              Brat
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment

              • #8
                Hello, and welcome to the boards. Your screen name tells alot about how you are feeling right now, and having a fractured soul must hurt on so many levels.It sounds to me like you need to find a doc in a bigger city who treats many patients w/ IC. There are many in the Boston area, Natic, and even down to the Springfield area. In fact, there is a support group next Saturday afternnon in the Boston area. I am not clear as to just where it is, but can find out for you, since I am planning toget to that meeting. Belieeve me, I share so many of your feelings. You are not alone, and the people here care about you.So Very glad you posted and hope to chat again soon. My email address is:[email protected] feel free to emil me any time. grouphug hi
                Wishing you the best, today, tomorrow, and always! Sheri G

                Comment

                • #9
                  Welcome to the boards and know that you are not alone. As the others have said, it's important to find a good urologist in your area who can come up with a treatment plan that will allow you to live a much more comfortable and productive life. None of what you're experiencing is in your head; it's all very real. We know because we've all been there.

                  Read up as much as you can about IC and related pelvic pain disorders, ask us as many questions as you need to, and be proactive about getting compassionate, quality medical care from a urologist who is familiar with IC and the available treatment options. Good luck!

                  grouphug
                  Namaste

                  "You must be the change you want to see in the world." - Mahatma Gandhi

                  "The most important medicine is tender love and care" - Mother Teresa

                  Proud mother of Ahleia, born on April 9, 2007

                  -----------------------
                  Diagnosed with:
                  IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

                  Meds:
                  Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

                  Health treatments/practices:
                  Kripalu yoga, Chiropractic, Massage therapy and Reiki

                  Comment

                  • #10
                    HI and welcome to the boards. I livei n Medway, MA and have a great uro who Ihave found and is knoweablale in ic and is willing to treat patinets and not give on them. I fyou would like his name and number I will galdy give it to you, just pm me or email me, my email is at the bottom of the page. This is not in your head. You need to get tested or diagonsed. We are here for you. gentle hugs. grouphug grouphug
                    Hang in there , There is hope.
                    There is hope. Prayer works.

                    Love, Debbie

                    Comment

                    • #11
                      Hello, and welcome to the boards, I agree whole heartedly with all the gals messages, this is certainly all not in your head. I know how hard it is to get on the right meds or regimen to help you out, but it can be done in time. You will find lots of supportive people on the boards, and a whole lot of information on the network that can be of some help dealing with IC. Please keep in touch, and let us know how you are doing, and hope you can get some relief soon from your pain, welcoming hugs Iris. hi grouphug
                      Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

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                      • #12
                        ~~ WELCOME ~~
                        Sue C.~
                        [email protected]

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                        • #13
                          See you are definately NOT alone!! hi

                          hugs
                          brianna

                          Comment

                          • #14
                            Welcome to the icn family.
                            You are not alone! please seek out a new uro. this isnt in your head and never has been sorry you are going threw a hard time right now but we are here for you we do understand and we will stick behind you.
                            grouphug
                            Medicine taken daily or as needed:
                            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                            2. MS.Cotin 100mg 3x daily
                            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                            4. Fentanyl 100 mg Change every 48hrs.
                            5. Gentamicin 80mg install after each rescue treatment
                            5 Leviquin 500mg self start as needed.
                            6. Klonopin 1 or 2 daily as needed.
                            7. Prosed/DS as 1 every 6hrs as needed.





                            I have IC, but IC doesn't have me anymore!

                            Comment

                            • #15
                              Hi all..
                              i am not on the comp Every dy.. but most of time. I will check in here as much as i can.. I finally got to talk to a few of you last night, you all seem so sweet and supportive. I thank heaven for people like you. Thank you all for the suggestions. I will continue to go to chats and read your boards and diet lists..=) As for doctors in my area.. there are few.. Since i have mass health too, my crappy insurance seems to love giving me crappy doctors.. i don't have a lot of dough so i often go to emergency rooms or junk docs.. i will have to take some of you up on your doc offers... I'm sure there are good docs in MA but i am just not meeting them..lol I have nothing against hindi doctors either but.. i seem to get ones that i can't understand and/or are very rough and brief w/ me.. This deters future visits for a while.. i ordered some prelief so that is on the way.. thankyou all and god bless talk soon =) Fracturedsoul @-(--
                              "..The more you know, the less you have to fear.."

                              Comment

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