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This is my story....

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  • This is my story....

    I am 23 years old, and for as long as I can remember, I have been in pain. When I was 15 I was diagnosed with endometriosis and ovarian cysts. I was put on birth control pills immediately. That still never took care of the pain I was always in. The only thing that helped was when I was pregnant. Unfortunately I was unable to carry full term on my first 3 pregnancies. I did deliver my daughter at 3 weeks early on the 4th, the 5th I lost as well. On the 6th I was able to deliver my son. The pregnancies helped with the pain significantly, but I did have many other problems. I went into labor with my daughter at 28 weeks and my son at 19 weeks. My uro contributes this problem to my IC. After my son I got a tubal, mostly because my b ody just can't handle it anymore. In January 2002 I was diagnosed with IC. After so many years of doctors telling me that the pain I was having was just in my head. It was such a relief to hear that someone believed me.

    My uro has tried many treatments and medicines. The pain and problems have gotten out of control within the last year or so. I have tried Elmiron, Celexa, DMSO, Detrol, Celebrex, Flexeril, Arganine, Amitriptaline, Ultram (which we found out I am allergic to), Tylenol 3, Vicodin and Morphine. Sometimes I am incontinet and then there are times when I am unable to urinate at all. I have spent many weeks in foley catheters. And I never thought that would be one of the best pain relievers I would ever have. Right now I am on Neurontin, and I am in more pain than I was just a couple of days ago. I am at my ropes end. I have 2 children that need me, especially since their father is away at Fort Benning, GA. My daughter is healthy, but my son has severe asthma that was caused from a 2 month bout of RSV.

    It is hard sometimes to stay strong, but because I have my two miracle babies, I am strong enough for them. I am just hoping for one day that I will be able to get out of bed and play with my children for as long as they want, and then go to bed that evening and sleep all night without pain.

    One day it will happen. Thank you all for letting me tell my story. I found this site earlier this evening and it has been lots of help for me. I am glad others have experienced the same things as me, I am not alone anymore.

  • #2
    Hi welcome to the boards. Ihave found neurotin works for me really good. Have they thought about doing a bladder supension for you for your stress incontinece. I am having tht done in few weeks . Please keep us posted and let us know how you are doing.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie


    • #3
      I'm so sorry you are having such a difficult time. Please don't give up; there are still other treatments and medications you can try. How long were you on Elmiron? The reason I ask is that it can take six months or longer to be effective. Are you following the IC diet? That one thing alone can be a real help.

      You'll find the IC Network Patient Handbook at It contains a wealth of information about treatment options, as well as diet recommendations.

      Sending warm healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Welcome! I'm so glad you found us and I hope to see you around.

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


        • #5

          And thatnks for sharing your Story.

          One day at a time!!!


          • #6
            Hi Azimom--

            Your story sounds all too familiar!! Well, I hope you get on the road to recovery and can get some relief for your pain! It sounds like you've got your priorities in order and want to stay positive, which makes a world of difference with your IC battles. Glad that you shared your story with us!!

            Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


            • #7
              I have not tried the bladder suspension for the stress incontinence. I was going to call the doc today and find out what other options there are. I was on the Elmiron for about a year and saw no changes for the good. I had alot of abdomen pain though. My uro decided to take me off of it because he didn't think it was working either. I know that when he did a hydro when he diagnosed me, it helped alot for quite a while. I wanted to see about getting that again. I am also following the diet. Nothing seems to be working.


              • #8
                Dear Azimom,

                Welcome to the ICN!

                I, too, can understand how overwhelming and frustrating dealing with IC can be. I was diagnosed when I was 20, so I can sympathize dealing with this all at such a young age. Sounds like you've been investigating your options, which is great.

                Thanks for sharing your story with us!

                Take care,
                My story of healing and hope


                • #9
                  you have had it very rough i'm sorry for your losts, but so glad you do have to little mircles! angel Welcome to the icn and I pray you will feel better really soon! Your right your children need you. I pray your son gets over his ashma as he gets older my youngest son also had rsv when he was small but luckly it wasnt that bad but my two older ones do have ashma.
                  Medicine taken daily or as needed:
                  1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                  2. MS.Cotin 100mg 3x daily
                  3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                  4. Fentanyl 100 mg Change every 48hrs.
                  5. Gentamicin 80mg install after each rescue treatment
                  5 Leviquin 500mg self start as needed.
                  6. Klonopin 1 or 2 daily as needed.
                  7. Prosed/DS as 1 every 6hrs as needed.

                  I have IC, but IC doesn't have me anymore!


                  • #10
                    warm wishes for you, I hope you get to feeling better soon. My daughter is going to Ft. Benning this weekend. She has been in Baghdad and they are sending her back to the states. Good luck with your babies, too. grouphug grouphug angel
                    A sense of humor is the lubricant of life's machinery.

                    love ya' patticake


                    • #11
                      My husband will be home from Fr Benning on the 9th. I talked to my uro this morning and he is setting up the hydro. He thinks it might be the right route to go for me. I know it will be hard for the first couple of weeks, but I can't wait to go without pain for a few months!


                      • #12
                        Welcome to the boards azimom, I am glad you found us, this is a great place to find support, understanding and information. Hope that you will be really better really soon as I know it it must be hard for you with young children and also being a military wife. I was a military wife so I understand all the things that go along with having a husband in the military, take care of yourself and good luck with your procedure, hope to see you on the boards when you can, hugs Iris hi grouphug grouphug
                        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


                        • #13
                          azimom, I hope that the hydro will give you the relief that you need. Hang on and have hope!
                          prayere and hugs coming your way!(((((a great big hus))))))

                          Newbie Angel- Giving support to those new to the boards with IC

                          Angel over the airways- Lets get the word out on IC!


                          • #14
                            Hello Azimom,
                            thank you for sharing your story, you are quite an inspiration. I hope you start to feel better soon. Sounds like you have two wonderful little angels,
                            One day at a time


                            • #15
                              I can't tell you how wonderful it has been to be able to talk to someone about all that happens to me. I don't feel alone anymore. Thank you so much for helping me!

                              I am scheduled for my hydro on the 20th. My uro thinks that maybe we should go this route from now on. I will be moving to Washington in Spetember, so he is going to send my new uro a letter explaining this. Does anyone know any good uro's in Port Orchard, Seattle or Tacoma?