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  • re-do

    I have written my introduction before, but felt I needed a redo. I try so hard so many times to pretend I am tough and I can handle this illness...but the reality is I feel very sad and very alone. I am 35 and have been dealing with doctors and pain for over 1/2 my life. My problems began with a long difficult battle with endometriosis. After numerous doctors and way too many surgeries, the last being a hysterectomy I thought my battle was done. A couple years ago I started having abdomen pain and frequent urination (upwards of 45x/day). With a distrust of doctors I reluctently went. My primary brushed me off like I was a druggy making up symptoms just to get a fix. After a few visits I got a referral to a urologist. I was diagnosed with severe IC and Hunner's. The urologist told me very little of this illness I had never heard of, gave me installations 1/week for 3 months and told me to deal with the pain cause it was for the rest of my life. It wasn't until recently I learned exactly what I was facing and just how difficult it was going to be. I am dealing with my first major flare up, and have a spouse that just doesn't understand. I look like I am 6 months pregnant, have pain that medications just doesn't seem to help, and to make matters worse developed a yeast infection today. So if you read my first post and I seemed like I was tough and had it all figured out...I don't, and I was stupid to try and pretend I did. I am tired, in pain, and feel very, very alone.
    Medical History: Endometriosis, Epstein Barr, Confirmed Severe IC with Hunner's
    Current Medications: Premarin, Gabapentin, Soma, Ambien, Hydrocodone, Antihistamines, Prestiq
    Past Treatments:Cocktail Installations
    Looking into: Vitamin D, Vistril and DSMO

    "I can do all things through Christ who strengthens me"

  • #2
    IC is a tough thing to handle, especially in the beginning. It sounds like you've already been through a lot medically, and I know it doesn't help when you feel like you don't have the support of your doctor and/or family members.

    You will find plenty of support, understanding & info to help here at ICN. You are not alone! While IC is not yet curable, there are treatments that help and most of us do find something that works for us. Odds are you'll be one of them so hang in there!

    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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    • #3
      Vicki is right. Most of us do find successful treatment options. Are you following an IC diet?

      If you're not feeling comfortable with what your uro is telling you, I suggest seeing a different uro for a second opinion. There are some really good, caring ones out there --- I know --- I have one.

      Sending warm hugs and healing thoughts your way,
      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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      • #4
        Thank you ladies for the much needed support. I have been following the IC diet for about 8 months. I just changed my primary physician and am waiting for a referral to my new urologist. I am pretty sure my flare came from the extreme stress I am under right now. It amazes me how much stress affects our bodies. I am very glad that I decided to join the forum, it is a great place to find comfort and feel understood.

        Thanks
        H
        Medical History: Endometriosis, Epstein Barr, Confirmed Severe IC with Hunner's
        Current Medications: Premarin, Gabapentin, Soma, Ambien, Hydrocodone, Antihistamines, Prestiq
        Past Treatments:Cocktail Installations
        Looking into: Vitamin D, Vistril and DSMO

        "I can do all things through Christ who strengthens me"

        Comment


        • #5
          Everything is worse with stress. I hope that things calm down for you medically and in the rest of your life.
          Sometimes I think our loved ones have a very difficult time understanding what is happening to us. My husband told me that he feels helpless when I am in so much pain, he gets angry, I thought he was angry at me for feeling so rotten, but he was angry because he can't help me. Lately, I have been telling him things he can do that help me, even in little ways. He is such a loving man, and I was really baffled when I thought he was angry at me for being sick. I think the turning point was when he read through some basic info about IC and a few of the posts in this forum. I think he is now my biggest advocate.
          I know that the pain of this sucks. I am up at 2 AM because I can't sleep, the pain is just too bad. I really hope that you have better luck with your new doctors, I am trying to find a new uro too, the last one said, "you may have to adjust your goals," when I asked him if he thought I could be pain-free with treatment. The last thing I needed right then was someone insinuating that I wouldn't ever feel well again, or that I had no pain-free days to look forward to. Its been more than 6 months since the last pain-free day, but I am still looking forward, and hoping I will get there. I hope that more effective treatments come out.

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          • #6
            I am sorry you are having such a rough time!
            Stress make me flare much worse, I know the feeling.
            Also my mom has a really hard time understanding all of this... as does my bf.
            I realized that they are struggling to understand as much as we are, and even they are in denial about IC...
            And don't worry, you dont have to put on a brave face here We all understand.
            I hope you find reliefe soon!

            Jenn
            28 yrs old,

            I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

            What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

            Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



            Me in my graduation gown!

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            • #7
              I really wish doctors would refrain from giving out "forever" and "the rest of your life" sentences to patients. They have no idea how these words affect us as patients and how it may leave us feeling hopeless and defeated. Which in no way helps in recovery. They all should read some books by Bernie Siegel MD on the emotional aspect of illness. I was diagnosed about 23 years ago with VVestibulitis and was told by the gyno that I better get used to the pain because I would have it the rest of my life. I left his office feeling so depressed that I actually got angry and thought "How does he know this for certain? Does he have a crystal ball or something?" and set out to prove him wrong. Well, I have been pain free for 22 years and have never had another occurrence of this condition. When I finally found someone to treat my PBS and she explained how some people actually spontaneously go into remission, some have a decrease in symptoms, and some are maintained well on medication and diet and that we would work out an individualized plan for me and that eventually she believed I would notice way more good days than bad- it gave me hope and I feel that is what has been contributing to my recovery.

              Comment


              • #8
                Originally posted by earthlady View Post
                I really wish doctors would refrain from giving out "forever" and "the rest of your life" sentences to patients. They have no idea how these words affect us as patients and how it may leave us feeling hopeless and defeated.
                I couldn't agree more! And not just doctors, the first book I'd read that mentioned IC basically said if you've got this your life is over. From my own experience I can say this is soooo not true! It took a while with plenty of back-steps but with treatment, stress reduction, and a close eye on diet I am now darn near symptom free. Never adjust your goals! Only put them on hold.

                Vicki
                "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                Comment


                • #9
                  I love to hear all of you...you bring hope to a lot of people. Thank you for being there when I needed to hear your thoughts. Dealing with this is easier knowing that there are all of you to walk through this with. I would love to hear more aobut your experiences, and the details of what you went through.
                  Medical History: Endometriosis, Epstein Barr, Confirmed Severe IC with Hunner's
                  Current Medications: Premarin, Gabapentin, Soma, Ambien, Hydrocodone, Antihistamines, Prestiq
                  Past Treatments:Cocktail Installations
                  Looking into: Vitamin D, Vistril and DSMO

                  "I can do all things through Christ who strengthens me"

                  Comment

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