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  • My Story

    I am new on this but a friend of mine looked this up for me so I would have some communication with our people like me. I am 43 and a year ago I was diagnosed with the IC. This is one of my most worst nitemares.One year ago December 12th 1999 I become really sick or lets say something really weird happened to my body and I ended up in the hospital and then a month later back in the hospital with the same symptoms and still the doctors had no idea what was wrong with me. then in February 2000 I went to my GYN and he decided I started my change of life so he started me on an Estrogen shot since I had a hystorectomy 12 years ago. 2 weeks after I had a really bad bladder infection and the doctor put me on an antibiotic and after taking it 10 days I still had the symptoms. I would call my doctor cring and telling him I couldn't live this way that I felt like the insides of me was falling out. He wouldn't do anything because he just didn't know what to do for me. I would call my GYN and he changed the Estrogen shot I was taken to a different kind and that helped some. After a month of many phone calls to my doctor he sent me to the Urologist. Then this doctor asked all kinds of questions and tried different medications and with phone call after phone calls to him and getting no where I ended up in the stress unit for 6 days. Due to me being so stressed from all the pain and not being able to deal and going to the stress unit I settled down and my bladder did so much better. The next day after being released from the hospital I had the surgery. Praise god it was the best thing that ever happened to me. Then I started the DMSO treatments and that was a God send. I was totally free of the pain but it went from a scale of 9 to 3. I still do DMSO and have been on the monthly program but the doctor is tring to work me to 6 weeks. The last treatment I had I went 5 weeks since my last one before that. September 12th 2000 I started the Elmiron and it was like over nite I went that whole month and not one flare up. I have been doing pretty good except this month and April I have been having some flare ups and I believe it might have something to do with the pollen.I do take the prelief and that does help with alot of things but since I had so much trouble in the beginning I am afraid to try too much because I do not handle the pain well. Usually when I have flare ups most of the time it usually only gets to a scale of 1 but tonite 5-6-01 it is a 2 and to me that is bad.I would like to know what this Atarax is. I read 3 different peoples letters and they spoke of this Atarax. I also have IBS and have had it for almost 5 years. Now I am having problems with my stomach and they have run all kinds of tests and all shows ok. They thought mainly it was my Gallbladder but it is ok and thought I might have ulcers and not. I am so tired of all this but this bladder thing really is a real bite. If it wasn't for the lord i wouldn't be where I am today. I am being treated for depression and anxiety and am seeing counceling because since I don't tolerate pain real well my mind gets goofey and the change of life does not help. I do find when I get my Estrogen shot it does help my bladder some. I know a girl right here in the same town I live in that she has this problem and nothing seems to help her and so she stopped going to the doctor. They talked like she could have the pace maker put in her bladder but she is afraid of it. My heart goes out to her. What I do for my IC is keep doing the DMSO, take my Elmiron and watch my diet to the most part of it and get up in the mornings and put one foot in front of the other and try to lead as normal a life as possible. Somedays is harder then others but I always think tomorrow will be another day and it will be better.I put my trust in the lord. My faith use to fade once in awhile but the longer I have this problem my faith stays stronger.My husband has been really good to me thru all this and bless his heart he tries to understand what I am going thru even tho he really don't. He goes with me when I have my DMSO treatments and holds my hand all the way thru it. What really hurts me is people just don't understand you and sometimes I try to explain the best I can and they still do get it. You just really can't explain or to make anyone to understand unless you go thru it. I would like to know of other things that might help me get thru this. I do write a lady that lives in MO also since I was diagnosed with this and she is wonderful to stay in touch but I have never met her yet. The one thing that bothers me is this has stopped our traveling for the fact too much changed and my depression doesn't handle it very well. The farthest we have traveled is to a town called Springfield MO which is 2 hours from here and I do really well. The 1st time since I have had this we stayed in Springfield because the next morning early I had to have some tests and I was really nervous about not being at home at nite and not being in a familiar place but I did really well. I am so pleased I had a chance to tell my story and hope to have some answer me.

  • #2
    Welcome to the IC Network. There are many helpful people here, as well as a wealth of information. The Patient Handbook at http://www.ic-network.com/handbook/ will help a great deal to learn more about IC.

    Many ICers (Me included) experience a great deal of relief from the hydrodistention done for diagnosis. When I had my first one back in 1975 it gave me so much relief that when the pain returns I go for another. I'm also on a DMSO monthly maintenance schedule. My uro says since I do so well on that schedule, we'll stay with it.

    Elmiron can cause intestinal problems. For some it's the capsule carrying the medication. You could try purchasing some empty capsules and emptying the elmiron into them --- or just empty the elmiron into water and try that. I'm told it doesn't tast very good.

    Just remember, it may take many months to find just which treatments and medications work best for you, but nearly all of us do get there.

    Warm welcoming hugs,
    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


    • #3
      Hi Carla and Welcome to the IC network!

      You will find a great group of people here who are always willing to help in any way they can to help you get through having IC on a daily basis.

      You have already heard from 2 of the best sources for support here as Donna and Teri have endured IC a lot longer than many of us.
      There are a lot of self-help tips in the patient handbook. When I first found the site I printed everything up so I had references for my doctor about things that I had learned. Then I found the "shop and subscribe" and ordered the handbook in a binder with a couple of good articles on pain. Now I loan my book to newly diagnosed ICers and I take it to all of my 'new' doctors appointments, like when I was diagnosed with Rheumatoid Arthritis, I took it to my Rheumy. It really helped him in finding an anti-inflammatory that is not acidic.

      I also thought I would mention that I had SEVERE upper GI pain and I found it was caused from the Elmiron. You might want to check it out.

      Good luck and I hope you will let us know how you are doing.
      christina
      Christina

      "Faith precedes the Miracle"

      Comment


      • #4
        hi carla
        i can totally understand where you are coming from. this disease is so very frustrating. the way my doctor explained it to me, is its like the late stage of cancer, but without the deadly cells. it has all the signs symptoms & pain as someone with bladder cancer. usually when i tell people that, they understand. i to was just diagnosed with ibs, plus my doctor feels i have fibroidmyalgia. i have heard about many sucess rates of people who go to pain clinics. i myself am going to one this month. the meds i take for the ic are elmiron, nueronton, elavil, pyridium plus, urised, levasin, norco, i do heprin & lidocaine installations at home & then weekly treatments at the dr of different med ( name unsure ). i have found that b& o suppositories can help alot. good luck in finding something that works.
        pooh

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