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  • My Story

    Hello-
    I
    'll finally got the courage to tell my story. Since I'm new to the board I wasn't sure if I could handle saying everything out loud.

    One morning I woke up and went to the bathroom; that was the beginning and the end. At first I thought I had a bladder infection so I went to the doctor. They put me on meds and told me that it would get better in a week. It didn't and I went back 5 times. I had so many tests. They finally referred me to a uro who put me on more,stronger, meds. that didn't work either. Now it had been months since this all began.

    I decided to do a csyto. He said that he didn't find anything and wanted to start me on a suppressive antibiotic protocal. I don't even know what that means. So I decided to try another uro. He set up another csyto, because the first one never filled my bladder with water. Why that matters I don't know.
    Then in March of this year i went for my second cysto. He said that my my capacity was somewhat diminished at 330 cc. After that he over expanded and filled it with water he noticed linear cracking and bleeding but mainly punctate submucosal hemorrhages and glomerular pattern. He then did the hydro. After that I felt perfect. I went to his office 2 weeks later and he told me nothing. I took no meds. I didn't even reliaze how serious this was until 7 months later when my symtopms came back.

    Now I had my last hyrdo 3 weeks ago, and not much relief. I tried Detrol, Ditropan, Vioxx, Tagament, Prelief, and Unistat. I just started Elmiron.The more I read about IC the more I don't agree with it. Maybe I'm in denial, but my only sympton is pressure. Always feeling like a have to go to the bathroom. The things I read about,classic signs, I don't have.

    I'm scared. I don't want to live my life like this.

    So thats my story. It's not as bad as others I've read but it makes me cry.

    Jennifer Lynn

  • #2
    {{{{Jennifer Lynn}}}}}}}

    Welcome to the ICN! I know having IC can be a scary diagnosis but you have to remember that for every person that posts that they are suffering, there are many more out there who are symptom free. It sounds like you had a good remmision after your 2nd hydro. What a blessing! Maybe that will happen again for you!

    There are many of us here with varying degrees of this disease. You say you just have pressure....that is good!! That was the first symptom that I experienced too.

    It is alright to feel bad about having IC but don't give up on finding something that works for you. We are all here for you! We care and you will find there are so many people here that live full lives WITH IC. Have hope! You can overcome it.

    Sending you a warm hug,
    christina

    [This message has been edited by christina (edited 11-02-2000).]
    Christina

    "Faith precedes the Miracle"

    Comment


    • #3
      Jennifer Lynn,
      Thanks for sharing your story. I thought I'd help educate you about your questions. I cysto is going into bladder with a scope and looking around. A cysto/hydrodistention is when they expand the bladder to see all the details. Just doing a plain cysto can't diagnose IC, because they can't see the cracks when it fully expands. Hopefully that helps clarify why you had to have another uro do the procedure again. The first only did a cysto. Surpressive or preventative antibiotics can be used if the Dr thinks infection is recurrent. This doesn't sound like your case.
      It's totally normal to go through periods of denial, depression, anger, etc. We've all been through it. Pressue or Urgency are very classic signs. What is your frequency like (how many times per day do you go)?
      take care,
      Melanie
      PS It's also totally normal to want to cry. We are here so you have a shoulder to cry on. Hope you feel better soon.
      Melanie
      __

      Comment


      • #4
        Thank you all for all your help.

        I go to the bathroom 5-6 times a day, but being on Elimron means a lot of water so noe 7-8 times. Can you start with one symton then get more? Is this going to get worst? My uro said that it will daper off as the years go by.

        Comment


        • #5
          First of all I'd like to welcome you to the IC Network family. You'll find a lot of information and support here. If you haven't read the Patient Handbook, you should definitely do so. It's at http://www.ic-network.com/handbook/

          It is absolutely normal to go through a grieving process when you have been diagnosed with IC --- I would consider it abnormal if you did not. But I'd like you to know that there IS life with IC. I was diagnosed 25 years ago. Over time I have learned which treatments work best for me, what foods are a problem, and how to deal with "flares" when the pain returns.

          It may take you a while, but you too will get there.

          Sending healing 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


          • #6
            Hi Jennifer, I felt like crying when they diagnosed me too so you are not at all alone. I know the pressure feeling is uncomfortable, but you may find some comfort in the fact you are going to the bathroom only 7-8 times a day. I have had flares where I go 7-8 times in an hour. This is not to say you will EVER be like that, as mine started that way and now for 90% of my life, I am symptom free. I only have problems during flares. I know you will find a med or combination of meds that works for you. it is really a trial and error process, but you will feel better. Sending hugs your way.
            Linda

            Comment


            • #7
              You guys are all lifesavers. I'm so glad that I found you.
              Jennifer

              Comment


              • #8
                The thing that bothers me the most is that after my first hyrdo my uro didn't tell me anything. Silly me i thought if I stayed away from caffine and bananas I would be fine.

                Comment


                • #9
                  Hi, my name is chrissi and let me start by saying i can not type to save any one life so please be forgiving when reading my posts. I was diagnosed with ic 4 years ago and I can honestly say I have never once had a pain free day. I read all about these people who have flare ups and go days even months without any pain. I don't even know what a flare up is because there has never been a break in my pain cycle. I have undergone every treatment known to mankind last year i had my first implant, spinal cord stimulator. They placed it in my back i had some low back relief but not much more. Last month they put a new one in my stomach my brother tells me i look like a deli sandwich i have been sliced open so many times and in so many places. I have a 4 inch incision to the right of my navel , a 2 inch incision on my side , a 8 inch incision up my spine and a 3 inch incision on the left upper buttocks from where the old stimulator was. I have tried every medication out there currently i am taking oxycontin 6 times a day for pain as well as ultram for pain. I also take zoloft, elmirion, nurontin, claritin, and ambien for sleep and i still have unrelenting pain 24/7 . I sleep probably 4 hours combined on a good night i get up atleast 6 to 8 times an evening after i fall asleep to go peeeeee. With all the different stuff i have had done i can say i have had a little relief in the urgency department as well as frequency. I seem to be able to hold my peeee a lot longer than before i don't know if it is the treatments and meds or just time and tolerence. I have had three gynos, one uro and an ic specialist. Now i go to a pain specialist who seems to be willing to expierence with anything new we hear about. My question has always been why don't i ever go into remission. Why has my pain had no end to it at all it has totally consumed me and my life. I hide it extremely well those that know me some even well would never know i had an illness unless i told them and i am not one to complain. Although i have to admit there are times i had wanted to call it quits. I would just stare at all the bottles of meds and wonder if i took them all would i just go to sleep and never wake up and then would the pain finally be over. Thank God those times are gone atleast for now. Now i am trying to look at things more clearly and hopeful i know there is not much to be done for me right now i will just have to wait until a new treatment comes out or a new med but i can try to speed things up. I am going to start fundraising to raise money for research or to help people who have lost their jobs due to ic. Well thats my story although it wasn't very short and i think iwas only suppose to be replying to yours for that i apologise. I am new at this and this is the first message i have even replied to. So hears my reply! I am very glad to hear the hydro was of some help to you and it seems your symptoms are not that severe so hold on and keep a bright outlook itn seems you respond to some of the treatments. My thoughts are with you and everyone else who has been stricken with this disease.

                  [This message has been edited by chrissi g (edited 11-11-2000).]

                  Comment


                  • #10
                    For Chrissi:

                    Welcome to the IC Network! I'm so very sorry you are having such a horrible time with your IC.

                    You didn't mention it and I am wondering if you have tried any of the medications that are instilled directly in the bladder. Some people are having some real successes with them.

                    Sending 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


                    • #11
                      JL, you might consider talking to a pychiatrist(sp?). I actually waited too long to talk to one and I had a severe case of depression. I have been seeing one for alittle over one year and must say I feel a tad better. At least I can look at this IC with a different look now, not alone. Gentle Hugs and Prayers, Tx-Brenda

                      Comment


                      • #12
                        Hi everyone it is me Chrissi again sending my relpy to those who commented on my post. Yes I have had many combinations of different meds instilled in my bladder and no i expierenced no significant relief especially not enough to justify the initial pain of having it done in the first place. I also have been seeing psychiatrist for the past 4 years I have gone through several trying to find the right combination currently i am seeing a psychiatrist who specializes in chronic pain patients and terminally ill people as well. I love going to my shrink it really gives me a chance to vent. I do not feel i am currently suffering from depression although reading my post may have led you to believe i am i was only being realistic and to the point in regards to my ic. I live in severe pain 24/7 and there is nothing any doctor or anyone else can do to change that at this point. I meditate, practice my relaxation exercises and i take it one day at a time but i am honest. My case so i am told is very severe by comparision as all treatments have failed to give me any relief. For now as i have said earlier i am living one day at a time and my faith in God is strong. I believe one day there will be an end to my pain ( or at least some relief) I am a happy person and i wear my illness well. Most people even some friends do not even know i am ill as well i never complain. For now i am going to try to focus my attentions to helping the ic community in whatever way i can. Good Luck ALL.ChrissiG

                        Comment

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