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Please help!!

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  • Please help!!

    I was diagnosed with IC in February of this year (2012) and since then I have had the worst time trying to find a doctor who can actually help me. My urologist sent me to a pain clinic so they could more adequately manage my pain. I went to see them yesterday and had probably the worst appointment of my life. The doctor told me that first and foremost they don't typically do anything for patients with IC. He said normally they are on Elimeron and that it manages their pain. I told him I could not afford it because I am not working right now. I am a full time student and well at this point with the amount of pain I have, I cannot hold a job. I have tried to work since I was diagnosed and I was just in to much pain each day and eventually had to quite. He told me that I need to get a job to get insurance to be able to afford the medication. I told him that I have talked to many different people with IC and offered suggestions that have worked for them, such as different pain medications. He told me that these were people who were hooked on narcotics and sat at home feeling sorry for themselves and that I needed to find support groups that have IC patients who are productive and working. I tried to explain the amount of pain I am in every day and that I am basically on my couch most days laying there in pain. He tried to tell me the people he talks to with IC aren't like that at all. He wanted me to talk to a psychologist...I am guessing he is saying that the pain is just in my head. My fiance was even with me at this appointment and tried to stress how much pain I am in. He basically said that the point of the pain clinic was to try and get people off of narcotics. So I basically got that it is like a rehab. He also told me that hydrocodone metabolizes into heroine. I have NEVER heard this before. He made me feel like I was stupid and I was insane for saying that most days my pain is at a 9/10. He told me when we were sitting there that obviously my pain was not at a 9/10 because I am not crying. I have never had a doctor be so rude and inconsiderate to me. I am completely out of ideas of what to do for pain control. I am currently taking amitriptyline, pyridium, paxil, probiotics, atarax, and baclofin. I am also in physical therapy, doing trigger point injections for my pelvic floor muscles, and they are doing biofeedback in physical therapy. I have tried rescue solutions and RIMSO installations with steroids and have had no success. I am completely frustrated and I no longer know what to do. Any advice would be greatly appreciated. I am tired of being miserable and want my life back for me and more importantly, my son. I live in Peoria Illinois and I am currently going to doctors through OSF because I do not have insurance. I have sisters charity, which pays for all of my medical bills.

  • #2
    Keep looking, there is place on this site that you can type your city into and it will find Dr's that specialize in IC. If that not helpful look in the phone book, surely in city as big as Peoria theres at least one specialist. Look for a urogynecologist. Call the hospital(s) and ask if they know of any Dr's that specialize in IC. I hear you on wanting your life back. I have not been able to work for 3 years because of IBS, just found found out about my IC in April. I have applied for disability, I'm now on anxiety meds because of this disease and in therapy because this disease is taking my life away. Dr's is changing one of them now from celexa (hurts my bladder real bad and only on it 13 days) to amitriptyline. My daughter and her husband and my grandkids have just moved in with us to try and help out. My husband is laid off. If it wasn't for my husband and daughter there wouldn't of been thanksgiving or Christmas this year because i am just not up to it. the dr.s won't refill my tramidol or flexeril because its to soon, apparently I'm supposed to be able to get by with one of each a day or something. They are the only way that I can get by, doing housework or trying to go grocery shopping get harder and harder all the time. I've pretty much quit driving unless I have to and when I do I usually grab a ice pack out of the freezer and sit on it even just to go across town, that's riding too, I have to take someone with me when I go grocery shopping because I can't make it through wall-mart due to the pain and I usually end sitting somewhere while they finish. I am actually seeing I guess you would say 3 dr.s my primary, a urologist out at the hospital who specializes in IC and a urogynecologist. I see the urologist because like you I have no insurance and I have help through the hospital and I don't have to buy the meds for my bladder treatments and take them to the office like I do with the urogynecologist so it only cost me $25 compared to the hundreds that they cost. The urologist did a test a couple weeks ago and diagnosed me with severe stress incontinence. The urogyn want to do urodynamics testing. some thing about putting probes in the bladder and vagina or rectum and testing the muscles or something. I'm having it the 7th and then hopefully I will be getting an appointment of surgery. I have to have a hysterectomy and they want to put mesh under or around the urethra. I Thank God everyday for my wonderful family, they are diffently the only thing that keeps me fighting. I will be praying for you keep me informed on your progress. Oh something that may help and its a cheap treatment but it taste nasty and that is a 20oz glass of water with a measuring teaspoon of baking soda in it mixed well, then drink 16ozs of plain water every 20 minutes for the next 3-4 hours. you can do this twice a day in 24 hours*. I drinking at least one glass everyday now, it does help some. God bless, I hope you get some relief soon.

    *Note from Kadi, ICN support leader: Do not do this treatment if you have high blood pressure or problems with sodium
    Last edited by kadi; 12-28-2012, 07:03 PM. Reason: added caution note to baking soda drink


    • #3
      I know exactly what you mean about having anxiety and everything. I have horrible anxiety now from all of this. My fiance recently suggested I start talking to someone about how I am feeling. I am depressed and I have been seeing myself fall further and further into this depression. I feel horrible because my fiance is working two jobs and going to school all while trying to take care of me and our 5 year old son. I feel like a failure as a mother at times because I can no longer get up and do the running around and playing like I used to. Our routine has become Mommy laying on the couch miserable while he plays next to me. I feel terrible for him because he is now terrified that Mommy is going to get really sick and die because I have been in the hospital so much. I had to have 2 surgeries this month and I was hospitalized for 4 days. I just feel horrible for him and it makes me even more mad that I am not getting the help I need and deserve. I am going to look for an IC specialist around Peoria. I just have to make sure they offer some type of charity like my urologist does right now. I do have a urogynecologist that just started at my urologist. I began seeing her about a month ago and I am hoping and praying she will help me. I have an apt on the 3rd and I am going to tell her what the pain clinic said and I hope she will give me something to help with the pain. I found out after I was diagnosed that my aunt and my grandma both have IC. They are not nearly as severe as I am. They can control symptoms with diet. As of right now I haven't found anything other than pain medication that helps. I will keep you in my prayers as well and I hope you can start getting the adequate pain medication you need to live each day. I can relate to everything you are saying! I almost wish I could switch bladders with the doctors for a day and then ask them what they want to do after they have felt the amount of pain I am in each day. Oh have you been diagnosed with pelvic floor dysfunction? It sounds to me like that may be a strong possibility.


      • #4
        NO I haven't been diagnosed with PFD yet. my uro/gyn wants to do whats called urodynamics testing the 7th. Not sure if that diagnoses any of that or not. I know it checks the muscles that about all i understand about it right now. I hear you on wishing we could switch organs with our doctors so they can feel our pain. I feel that way about the SSD people that are reviewing my stuff to see if they are going to deny me again.The anxiety meds are no picnic with the Dr's either. I'm taking one that the Dr had put on there "must last 30 days and yet I'm supposed to take them twice a day and they gave me 30 pills. UUMMM.....bit of a problem there, so they put me on celexa to take in the morning and it flared me really bad and I hadn't even taken it tow weeks. So I didn't take any yesterday morning and called them and they prescribed amitriptyline, after I told them that celexa was not IC bladder friendly and that here was a list of ones that ARE. Pretty bad when you have to do the dR.'s job for them, but anyway, I'm feeling better already as far as the flare goes but I'm getting that wound up like an 8 day clock feeling again so not sure if its going to help that or not. I am also going to counseling once a week and i think its helping some. God Bless I will keep you in my prayers. Diffently talk to someone, start with your primary dr. and go from there. But keep fighting you got to much to live for, a man who loves you and is supportive and a wonderful little boy that needs his mom and is grow up fast.


        • #5
          Re: Please help!!

          As I read so many of these forums, I can't help but feel my own feelings and frustrations mirrored back at me. I am so glad we all have each other here, but it is so sad that so many of us still suffer so much, with so little understanding from some of the doctors. I am also really afraid of what may happen once the new health care is in effect. I, fortunately, have great insurance and a wonderful husband who works so hard to support us. Already, though, our insurance is covering less, and costing more. I have so many people to add to my prayer list now. But know that I will be praying hard for all of us who are suffering. Wish me luck, as today is supposed to be my family's Thanks Giving, and I am so hoping that I will be able to get out of bed by this afternoon, and won't have to miss it. As I am right now, I won't be going. But yesterday it seemed to ease off in the afternoon. I will keep my fingers crossed that the same happens today.
          HUGS TO ALL,