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  • Scared

    Hi everyone, I have not officially been diagnosed yet, but I am pretty sure that I do have IC. In my heart I never wanted to believe it, and I have been trying out everything to make this discomfort go away. I was given too many anti biotics for an infection, and this was the result afterwards.... I think the antibiotics must have just stripped everything that was good in my body and now I am suffering. I had to come home from University about a week after the UTI symptoms started (no pain) because I could not handle it anymore.

    I was beginning to retain urine and I couldnt pee on my own. After going over and over tot he dr and ER where my university was, (having EVERY test under the sun, all negative) I was given an anti depressent ( needless to say I was offended for sure, but I know now that they can help with nerve pain etc).. I took the first dose of thi anti depressent and BOOM couldnt pe AT ALL... Anyways my parents flew me home and I was admitted as soon as I landed to the hospital in my area because I could NOT physically pee on my own. TERRIFYING. No one could do ANYTHING for me, and I even had a uro look in my bladder (cytoscope) but without the distention, he also told me he dint think I had IC (which I had researched previously before this prodedure).... Everyone told me that I would be fine, just give it time... so I believed them, but I also started to do research....

    What I did first was took anti fungals and went on the anti candida diet to see if it might just be yeast affecting my bladder. This DID help, but I was still having trouble with frequency and pressure etc. So Next I thougt, ok maby I will go off of my pill as I was noticing that everytime I would start a new pack my bladder would HATE me for about 7 days, and then, just like that the discomfort would subside (not completley but managable) on the week and a half before my period. My periods were also fine as well. I noticed that when I got off my pill I actually felt really good for about a week, and then ( not sure what I was thinking) but I took a CRANBERRY suppliment, thinking in some way it might help. HUGE mistake, I was in a "flare" for 3 days and I am slowly coming out of it now. I have NO real pain. I have some twingy discomfort sometimes and it always feels like I have to go when I don't. Sometims I do get releife though ( I was having reliefe before this cranberry pill incident)...where I am able to pee and then feel normal for about 40 min to an hour before I have to go again. I am terrified that I will eventually have pain, and I am so scared for my future right now, I am only 24!!!! I have a prescription for Elmiron, and I have taken three pills.... and stopped... I am still leery about this med because I dont want to lose my hair... I would rather do everything naturally if I can, and diet has seemed to help the most....I will try Elmron again if I cant get my symptoms under control with diet...

    Right now I have to pee and I just went about 15 min ago.... mind you I have been drinking alot. Usually when I DO go and im not having discomfort I can hold 300 to 400 ml in my bladder before I go.............I measure it everytime. Latley I have been taking these bicarbinate pills that help rebalance the PH. I try and keep my urine alkaline, but right now it is VERY acidic.... probably why I am having discomfort...

    I really want to be a mom, and I am scared that I will never be able to feel better, or have a family.....

    I am scared of a diagnosis because that really means this is real.... I am also scared that a hydro will make me worse than I am.


    Please help...
    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!


  • #2
    So many other things...

    Are you being tested in other ways?

    Gynecological tests, ultrasounds, etc., uro-dynamics...

    A doctor told me after performing the uro-dynamics test that she was sure I didn't have Overactive Bladder and she didn't think IC, but after feeling my vaginal muscles, she thinks I may have Pelvic Floor Dysfunction; I'm going for an evaluation this week. I'm hoping that this is what I have. I also still need to get a bladder biopsy if the therapy doesn't help, hoping this will diagnose IC or not!

    Hang in there! I'm trying. BTW, I'm 29.
    Maria



    Current medication: Soul-searching

    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




    Comment


    • #3
      Yes, I have I have ultrasounds all gynecolgical testing CT scans etc. I have a uro dynamics teting in May, but really the last thing I want is someone poking around in my sore bladder... The Dr. felt around in my vagina but said there was nothing out of the ordinary that he could feel. I have no pain in my vagina either. I would like to check out Pelvic floor therapy and its on my list... Right now I am trying really hard to stick with diet alone. I want to take the elmiron, and I have been off and on, but not enough to see any results. I am having a hard time making up my mind though, I go back and forth all the time because I am i so much discomfort. I think I will try and stop taking the elmiron and jut focus on eliminating foods. I found ***** *******s website and I will be following her diet that is in stages. Initially when I found out all this I tried something similar and it seemed to help alot, and I think that is what got me to the place I was before I started to eat sugar again and things that I wasnt supposed to....

      My mom really want me to focus on the diet alone, she is scared of the side affects that go along with Elmiron, I dont blame her... I have a drs appt on the 19 of April and I wil ask for a referral to a PT therapist then... What are your symptoms? Have you gone on the IC diet? The worst one I have has got to be a mild burning sensation as my blader fills.. sometimes I have pain twinges when i empty it, but not to bad, and the frequency, well that is just horrid.

      SPeaking of wich I have to pee now... lol
      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!

      Comment


      • #4
        Decision

        Ok so I have decided that I AM going to stick with Elmiron for awhile to see how I react. and I am also going to follow a yeast free IC diet.. so NO SUGAR... ugh.

        I figure I have nothing to lose, oh except my hair... bahaha.. thats not really that funny.

        For people who have been on Elmiron or on it, can you please share your experiences?? I would love to have others input because I am TERRIFIED at this moment and really unsure. I would love to get to a managable level and be able to work again!

        Thanks!
        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!

        Comment


        • #5
          First of all, only a very tiny percentage of people taking elmiron lose any hair. It can take six months or longer to become effective so giving it a short term trial probably won't help.

          It's good that you are following an IC diet --- you'll find the latest food list at the link in my signature below.

          Sending warm healing thoughts,
          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


          • #6
            My experience with Elmiron: I can eat a whole lot more foods than I could 6 months ago, and... that's it. I have had no side effects. My hair is fine.

            I am 29, and feel a million times better than I did at diagnosis. No, seriously... a million.
            Symtoms started July 2010.
            Severe pelvic floor pain only.

            2 time PT graduate!
            In medical remission since August 2011; able to eat and drink anything I want currently.

            IC meds:
            200 mg Elmiron in the morning
            100 mg Elmiron @ night
            Macrobid after intercourse

            03/11 07/11 01/12
            If at first you don't succeed: 07/26/2013!

            Comment


            • #7
              You could also try quercetin. You can order it online or get it at a supplement store. It supposedly works like Elmiron and is more herbal, but I'd stick with the Elmiron and do both.
              • 27 year old student
              • Had symptoms since I was 5
              • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
              • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
              • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
              • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


              Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

              What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

              What didn't work: Elavil, vistaril (12/22)

              Comment


              • #8
                Hi I am new here..today is my appt with my uro. After 6 years finally I will know!!! It will have a name !!! Last week had a cysto/hydro? and in serious pain now..he found ulcers and polyps. Also had my urethra opened up a bit as it was constricted. I still can't sit up straight. Before procedures he told me he was almost sure it was IC...I am scared, in constant pain, this burning and I fell like someone is cutting me with a knife!. Urinating every hour. I NEED help for my pain. I think he's against prescribing pain meds...I wonder if he really understnds the pain involved. Sorry, I just wanted to vent..I've been on this site reading all I can preparing for my appt. If someone is reading can you tell me if I have a right to ask for pain meds? I feel embarrassed about this...THanks to all that I read I feel a connection to you..someone understands!

                Comment


                • #9
                  migdy- If you're in pain you have every right to ask for pain meds. I kept waiting for my drs. to offer me something for pain but a lot of them won't unless you bring it up. So now I just say "I need something for the pain." I don't take any pain meds right now because the bladder med I take does trick but with this condition it is always good to have something on hand.

                  Comment


                  • #10
                    Finally!! A diagnosis!!!

                    Hi! Thanks for getting back to me...Got back from the Uro and it' official. I was diagnosed with IC...gave me Elmiron, atarax and a newish pain med Nucynta (to take as needed). I am reading all about the diet and anxious to get started on my healing process. I understand the elmiron takes some time to work, but I feel better just knowing the uro understands me and after 6 long years I finally have a diagnosis! It's good to know that your treatment is working. and Again thank you so much for answering!! By the way I did exactly that....just asked and it was no big deal for him to prescribe the pain meds!

                    Comment


                    • #11
                      I have tried the diet and noticed that it doesn't really help or hinder me, so I try and watch, but I'm not dedicated to it.

                      My symptoms have been having the sensation that my bladder is never empty, and after about 2 hours, I can't take it anymore because the pressure and discomfort is so bad.

                      I've started taking Cystoprotek and I've been applying heat to my back and belly whenever I can, which seems to be helping some. I started my PT yesterday and am a bit sore today. My PT showed me that my legs were uneven, but after she worked the muscle right inside my pelvis, they became equal again--weird!

                      I think I may have some really tense and messed up muscles there from back problems...I don't know, so we'll see!

                      Are you feeling any better? I hope.
                      Maria



                      Current medication: Soul-searching

                      Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                      Comment


                      • #12
                        First day of treatment!

                        Hi Maria...sorry to know the diet does not do much for you. I just started it as of this morning along with the first doses of Elmiron. It takes quite a bit of time to kick in my uro says so I still feel terrible. The pain pill I got worked great and I was able to sit and watch "dancing with the stars". But of course they are for really bad days only so today I haven't taken any. The heat patches seem like a great idea. I'm heading out to buy some. I hope you are able to keep the PT sessions that's always a good thing. Hope you feel better today!

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