Announcement

Collapse
No announcement yet.

Here is my story

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Here is my story



    I was diagnosed with IC in May 1997 when I was 23 years old. I had been having trouble a long time before 1997 but no doctor I went to could find out what was wrong with me. But thinking back no doctor really explored my bladder....it was always intestinal, female, stomach etc, etc. In 1995 I was in the hospital for 9 days having so many test it took me 2 months to get over it. I was married in 1996 and 1 month after getting married I had emergency gall bladder surgery and I thought "My poor husband!" But then a year later hear comes this disease called Interstitial Cystitis. The doctor told me that I had a mild to moderate case and said that if I went strictly by the IC diet that I would die of malnutrition but he gave me a list of things that his other patients said caused them to flare. I stuck with this and meant that this disease was not going to cause me an early divorce or give me a complicated life....well guess what...IT DID ANYWAY! I hurt a lot and was on all this medication (Elavil, Prozac to help my Elavil dosage be higher and pain meds galore) that made me a zombie so the doctor took me off of them. Then in September 1997 I found out I was pregnant so I guess that it was good he took me off the meds because those were not pregnancy friendly medications. I was a very sick pregnant woman morning sickness was 24/7. At about 6 months I got a horrible UTI that had in me in so much pain but the doctor treated me and all was well. My IC did great up until about 8 months and then my bladder put me into pre-term labor by deciding to hold on to a horrible bacterial infection and bleed and bleed. SO I was kept in the hospital. My son was born a month and a half later (yes 10 days over) and he was born with Spina Bifida....it was a mild case and we were fortunate to have one of the best neurosurgeons around. All I can say during this time was THANK GOODNESS FOR PAIN MEDS. Not only did I have a c-section but the bladder was in a traumatic flare! We got through that and life went on and I did pretty good for the next year or so, even went through a second pregnancy and c-section. Now that my daughter is 7 I have had so much pain over the last 7 years off and on. My flare ups seem to come in 6's....I willl flare for 6 months and then go into remission for 6 months. I have had a hysterectomy at age 26 because the IC and my periods did not mix. I would go to the ER one a month because it would be so bad and after EVERY period I would get a yeast infection with a UTI. YOu would think that my system would be use to medications but it is not and it can not handle a lot of meds. Like right now I have been taking lots just to get through the day (I was given Respas for spasms, I have Lortab 7 for pain, Prosed for numbing the urinary tract, Vesicare for overactive bladder and then just plain ole Advil (eating like candy)) Maybe it is me getting older as well as the disease progressing. My current URO is married to a hometown friend so I can tell him anything and he listens and is sympathetic but on the other hand I feel like he thinks I making things up sometimes. I have had 5 hydrodistentions in the last 6 years and they have helped up until the last one in March, 2007. AND SO THE STORY CONTINUES.......

  • #2
    You poor thing...
    I am so glad I did not have IC when I was having my kids.. Well I think I had it but it was only frequency at the time...It is sad that we all have to deal with this disease day by day.. Hoping and praying just for one good day..
    I sure hope you start getting some kind of relief soon..God Bless You!!!((((((((((hugs)))))))))))
    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN 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.

    Comment


    • #3
      To the ICN,

      You are not alone, so many of us have struggled for years to get a diagnosis.

      Comment


      • #4
        Thank you leelee

        Thank you so much for your encouragement and kind words....I was feeling so ALONE today and just really depressed and this has helped me tremondously!!! I just keep telling myself that "That which does not kill us will only make us stronger!" and that "There is someone else out there that is worse off than me!"

        Comment


        • #5
          Please never feel alone.. Thats what this bored is all about. Helping those who are hurting or just want to scream or just to talk.. We are here for you... (((((((((((((hugs)))))))))))
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN 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.

          Comment


          • #6
            Thanks!

            I will have me a good night of crying and will wake up feeling cleanse tomorrow...that's what I have to do with this disease sometimes is CRY IT OUT!!!

            Comment


            • #7
              I hope your tomorrow is better. Sometimes a good cry really helps.


              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


              • #8
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment


                • #9
                  I'm sorry about all your misfortunes. I just wanted to ask you though about all the Advil. I can't take ibuprofen for it makes me burn like crazy. When I take it, it gets rid of pain but then the next day I am in agony. Just an suggestion.

                  Comment


                  • #10
                    You know I have never thought about it but the burning NEVER goes away with the Advil as well as the pain...it dulls it but it never goes away. I am not going to take it anymore and see what happens! Thanks for the insight!

                    Comment

                    Working...
                    X