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  • Confused

    My name is Stacey, I have 3 children, Brandon 10, Victoria 2, and Anthony 6 months. I'm in a relationship with a wonderful man who has maybe not understood all the time the pain but has stood by me and been there to hold me or give me my medication.

    I just found out last week that I have IC....or we hope that is what it is. I have always had "female" problems. From heavy long periods to cyst, tumors...just a bunch. In May of 2005 I had to have my left ovary removed due to a tumor that had teeth and hair. I forgot the name dermoid I think. Then the Hurricaine's came and we had to leave due to Rita.(I live in Texas, near Houston) Found out I was PG the week before and lost the baby the week we had to leave. Thankfully I was able to get pg again very soon. Had a very had pg with my last son.....was in alot of pain and maybe now I know why. Anthony was born in September. November I was told that I had another cyst and it was not that bad or big...talked with my doc and I told her look I don't want to be in PAIN anymore I want to stop all these pain meds and she said ok lets do a Hysterectomy. I said go for it. Had that done this past DEC. Found out that the ovary was consumed by the cyst and was as large as a man fist.

    Well 3 months later still in pain. Changed docs and here we are today. I'm taking Permain, Lexapro, Elmeroin, Vicodon, and now soma. Not sure why on the soma!! I'm supposed to go in for these "treatments" once a week. This is where they insert a cath ( I have to have a ped cath or I have major problems) and put some kind of numbing med into my bladder. I'm not real sure that it is working. The doc said it is supposed to work right away. But today it didn't really seem to help at all.

    I just don't know what to do at this point. I'm very grateful for this forum and thank anyone who might help me out in the long run. Please everyone take care and thanks again
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

  • #2
    The treatments you are getting are called instillations. There are many different medications and combinations of medications that are used. If the one he's using aren't working well, you could talk to your uro about changing the solution being used.

    I hope you feel better soon.

    Donna
    Stay safe


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    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]

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    Comment


    • #3
      Sorry to hear of your recent d/x. You have definately had a rough go of it! I agree with Donna that you should talk to your Uro, since there are many different combinations they can try. It takes several months for most of the meds and the diet to work. I know it is terrible waiting and hurting. But, most patients do end up finding something that helps.

      I hope you get to feeling better soon! Meanwhile, I am really glad that you found us. I think you'll really like it hear and get alot of great information and support.

      Hugs,
      Amy

      Comment


      • #4
        Thank you both very much for the support. I don't have a URO yet I have just been going to this new GYN. What I'm not sure of is why he gave me SOMA!!!! I mean it is ok I guess but how does that take away the pain? If u have any help on this I would love to hear it. I have been on Vicodon for almost 3 yrs and I know that it is not good due to liver problems. No I don't feel like I have to have them all the time just when I'm in pain. The most that I have taken in a day is 4. And for being on them for 3 yrs I think that is pretty good. I have been very careful. But at the same time I do believe that my body can tell when I have not had them in a few days. Anyways thanks so much and take care
        Live your life to YOUR best, and Love to YOUR best!!!



        DX in 03 with Shingles
        Removal of Left ovary due to Cyst in 2005,
        I have had cyst since I started my period as a child age 12
        Hysterecotmy December 06
        IC DX March 07 by PST
        2 "rescue" instills in March 07
        Cyco May 07 confirmed IC
        Uro study June 07
        1st Pain Block July 17,08
        Hydro/Cysto Nov 11, 2008
        12-11-08 was told I had alot of inflamation

        Meds: Allergic to 6 things
        Premarin......taking the gen cause I get it at Walmart for 4$$
        Presique for my drepression :woohoo:
        Abilify for my depression
        Adderall ...found out I'm ADD...makes sense now
        Kolopin for anxiety
        Noroco for my pain
        Valtrex for my shingles as needed

        Sorry if my spelling is off on the meds [/FONT]


        http://community.webshots.com/user/s...host=community

        Comment


        • #5
          Donna's right. There are a number of different instillations. I would think if they are not working the way the gyn thinks they should you might want to ask what his next plan is.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            You didn't say anything about diet modification? Are you following the IC diet?

            Comment


            • #7
              No, I do not have any food sensitivities. My Orthopeadic Suregon referred me to an allergist before total knee repalcement because I had a nickel allergy. When the allergist found out that I had IC he tested for all the food sensitivities because he knew that most ICers have food sensitivities.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas
              Louann

              Comment


              • #8
                hi Stacey;
                I Am so so sorry to hear of all the things you have been threw. I cant imagin going threw all of that. and now have IC on top oof it all. My goodness. Well I had the Installations done, and they didnt work for me at all. My doctor will not even do them on me any more because it acculy made the pain worse. The thing with IC is that everyone is diferant. What works for one might now work for another.
                I have not been on soma, But i take flexeral when i need it. It does help to relax the muscels. You need to practice not tighting up your pelvic muscles, that makes the pains worse. I also take Elevil, up to 150mg right now. But my doc said some go higher then that before they can relax the pelvic mucels enough,the amount of stress you must feel i bet your pelvis is just clenched. That is what happends to me. You just need to find the right combination of everything. Hopefuly your medicanwill help you to feel better soon. take care dear.

                stacy Y


                Current Conditions:
                Endometriosis,1995
                IC,Feb 06
                IBS-C

                Prenecious Anemia
                Stomach Ulcers
                Duodenitis
                Acid Reflux
                Low Blood Sugar
                Hypothyroid
                Migrains

                Surgeries
                Laporoscopy-1995
                Gaul Bladder-1996
                Laporoscopy-2005
                colonoscopy2005
                cysto/hydro-2006
                cysto/hydro-2007

                endoscope-2007

                Meds:
                Elmiron,100mg 2am 2pm
                Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
                Elavil, 150 1pm
                Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
                Prilosec,20mg 1am 1pm
                Zoloft,100mg 1 pm
                Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
                Reglan, 10mg, 1 3xday with meals-for duonditis
                Ultram 50mg 1 every 4hrs as needed for pain
                Pyridim,100mg as needed
                Vicodin 5/500 as needed for pain
                Heating pad
                Ice Pack
                Arthritis Pain Equate brand 650mg usualy 2 at a time
                Stool softeners w/stimuli, 2am 2pm[/COLOR]

                Hopefuly no more gets added to the list!!!

                I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
                Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
                My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
                When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
                Dont forget to take care of you!
                Take care

                Comment

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