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  • my story

    This is my Bladder:

    My name is Cindy, I am married and have a daughter who will be 16 in August. I was diagnosed with IC in July of 2001, I know I have had it for many years, as I can recall the symptoms as far back as High School. I would go to the bathroom between nearly every class and at lunch time.. I often had to get a pass to get out of class to go. I recall going on vacations with my Family and having to go all the time, I never thought any of this was a problem because my Mom always had to go too, so I naturally assumed it was “normal”. I eventually learned my mother had this horrid disease that I could not pronounce, and she had to go in and have these treatments that made her smell so bad, and, I would tease her of how bad she smelled... I remember driving home and rolling the window down because she smelled so bad of garlic. I could never begin to tell you how very sorry I am for being such a horrible child.
    Ok lets go a little further into the future... I got married and had my daughter, I would take my daughter to Great Grandma’s & Grandpa’s, every weekend by the time I was on the express way 45 minutes I had to go to the bathroom and my 2 ½ hour drive often took me 4 hours. In 1996 the doctors insisted my pain was non existent, and it was in my head.. I was in severe pain and finally I broke down and went to er, they took out my appendix at 3am and told me my troubles were over. Then the insurance company would not cover the bill because they wrote it up as elective surgery. Who in there right mind and what surgeon dose elective surgery at 3am?? That was my fight with the insurance co and the hospital.. Eventually 2 years later it was paid... Well I thought my trouble was over, still not linking my Mom and I both having the same problems. I went back to work and everything started back, I lost jobs because I spent “quality” time in the rest room.
    Over the last 3 years.... I went from doctor to doctor begging for help and a digenesis. My regular doctor sent me to a gyn who told me it was the general doctors problem and the general doctor sent me back to the gyn.. I was then re seen by the gyn and I found out I had cervical cancer. I had it removed and get tested every 6 months. She in turn told me I was to hard to do gyn procedures, and did not know how to help me, She also told my husband that there was noting further medically wrong with me to take me home and talk to me I was seeking attention. I was scheduled for one more appt to make sure the cancer was gone and took my Mom with me, she the gyn told my mother that your daughter is just seeking attention.. My Mom said what is the possibility of my daughter having IC . The gyn told my mother that she highly doubted it, ask my general doctor for a referral to a uro. I went to him and he flat out refused and told me that there was nothing wrong with my bladder. Well here we go back to the gyn, and all but begged for a referral, I was granted one. I went to the uro and was given and in office cystoscopy and he told me no you don’t have nothing wrong with your bladder it looks great. My husband was with me and I just broke out and tears and told him what has been going on and he said he would do a procedure called Hydrodenstion and cystoscopy, but, he knows he would find nothing. Well July 2001, I went in to the hospital and he told my husband your wife has moderate to sever IC, and her bladder under sedation only hold 350 cc’s.
    In September 2001 I went to My moms uro, after an insurance change. That is where I met my wonderful uro. He is in the top 10 of the best IC Specialist in the United States. He has treated me wonderfully and suggested a device called the interstim.. I thought no way... Well as the last couple years that have gone by I have been diagnosed with Fibromyalgia, Myofascial pain syndrom, Sacralittis. Well I decided that peeing 30 times a day was really getting on my last nerve and I filled for disability and was approved. I then spoke with my uro regarding the Interstim and he explained it to me. I researched for over a year and decided that is what I wanted to do. So April 2, 2003 I had my stage trial and it was a great relief, I was amazed. On April 16th 2003 I had my Implant of the device and have had great results with frequency and urgency. My frequency has gone up, but as long as the horrid urgency I had don’t come back I can deal with voiding 12 to 18 times a day, its still better than the 30. Since I have had the interstim I was diagnosed with Pelvic Floor Dysfunction, slight curvature of the spine, my tail bone is restricted and in the wrong spot....
    My Interstim story:
    Where do I begin..... It took me a year to decide to have the interstim done. I took a lot of time to make a very large decision that would affect my life greatly in the mean time I done a lot of research on having a device put into my body.
    My uro (which by the way is my god) is the most wonderful man that walks the earth. He explained to me and my husband in detail of what would take place during stage 1 and stage 2 surgery. There were no questions that lingered in my mind after I had left. I was clear on all the details of everything before I left his office, to include pre surgical insurance information. I had taken in a list of questions with me that were all answered.
    On April 2nd I went in and had the stage 1 surgery done. I met a rep from Medtronics she explained everything to me in detail and was wonderful. Next... That is where they put in the wires in side my body. My muscles and my nerves did not respond (even with the device turned up to the highest level) and, they had to end up putting the leads in by x-ray. My uro was upset by this and only had the hopes that I would respond to the interstim after surgery. The incisions were fairly small, they made on above my tail bone, one on my right butt cheek, and then ran the lead to the other side and out my right butt cheek (sorry didn't know any other way to explain this) I had a 3 foot lead out a hole there in my butt and was connected to the grey box.. ... After surgery I was very, very numb.. When I voided I could not feel myself wipe, that lasted for about 3 hours after surgery....
    April 3rd, I turned myself on , and felt the pulsating of the interstim in my rectum, when I laid down I felt it in my butt and lower back. At first it was not even on 1 as the days went on I got it far up as 2 - 2 1/2..tops. (as my body adjusted to the pulsating and the ansetisia (sp) wore off) My voiding went from 21 to 30 down to 7 to 10 times a day... omg what a difference and a relief . My stage trail lasted two weeks.
    April 16th, back to the hospital... Where I met with my rep again and again explained to me all about the interstim device and my remote, antenna and magnets... everything, she was very informative.. Well here we go in O.R. again They re-opened the incision on my right cheek and implanted the device its self... I went to the hospital at 6;30 am and returned home by 11:15 am.. It went very well.
    April 18th, still sore... as expected for what I have been thru... But all is grand and I am doing well.
    If you are thinking of having interstim done don't hesitate to ask me any questions.. I had no problems and am recovering very well...
    Today Feb 2004, still having great success with my interstim and would do it all again with a second thought...
    Hugs to all
    'The will of God will never take you where the Grace of God will not protect you.'

  • #2
    Hi Cindy,

    Great job with your story. I think it shows how far you have come with all your struggles with IC. This just shows that you are a great advocate for yourself, and you don't give up. You really inspired me to go for the InterStim--I was scared awfully before and you helped me. You are certainly an angel, and your story just shows how much you have gone through...

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


    • #3
      Thanks Jess,
      Ireally appricate you reading my story and posting. It means alot to me. grouphug kissing
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        Sorry you were in such a terrible condition before diagnosis....and so sorry you have gone through so much. Glad the Insterm is helping you. Thank you for sharing your story with us. grouphug
        Faith, Hope, and Love,

        I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        or find me on facebook
        Be the Miracle! & Pay it Forward!

        [email protected] please contact me...I am here to help!


        • #5
          thank you Katrina
          I added a picture on my bladder to my post.
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6
            Thank you for sharing! I am so sorry you had to go through so much, but I am happy to hear you have finally found some help!!!

            grouphug grouphug


            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.


            • #7
              I am glad that you have found something that helps you with your IC. I am also glad that you posted your story. As I am sure it will give others hope who are struggling with IC. wink



              • #8
                I am glad that the interstim is really helping you out a lot. Your story was very interesting, and how much you had to go through, to get to a better place. Thank you for posting, and letting us know just how much you hung in there, until you got what you needed to help you deal with IC. I have a lot of respect for you, hugs and love Iris. hi kissing 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.


                • #9
                  I am so happy for you Cindy. That something is finally helping. I really have hope now that soon everyone will get relief from something, at least they are working on new drugs every year. Good for you!


                  • #10
                    Thanks Cindy for shareing your story with the icn family i think it may help some newbies it lets them now there is more op. out there. you have truly came alone way.
                    hugs sent to one of my wonderful friends lylas
                    Rhonda. grouphug
                    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!


                    • #11

                      Congrats on finding treatment that's helped you tremendously and for sharing. Sounds like you had some really bad times with dr.'s, pain and diagnosis. Your story gives hope for all of us. Thank you so much and I'm thrilled you're doing so well. Julie


                      • #12
                        Hi Cindy,

                        thanks for sharing your story. I read an article recently that said that 1st female relatives of ICers have a 17 times more likely chance of getting IC. I am going to go look for the article and see if I can find it.

                        Your bladder pictures sure make me cringe. I'm glad the interstim is working so well.

                        Cath grouphug
                        One day at a time