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  • #1

    Hi I'm Donna

    and I've been recently diagnosed with both IC, severe bladder prolapse and Fibromyalgia.

    My symptoms began over 20 years ago. Initially, doctors thought it was "frequent, recurrent UTI's" and treated me with antibiotics. When that failed, I was sent to a urologist who did a cystocopy in his office and told me I simply had a narrow urethra, and that having urethral dialation done periodically would "cure" my symptoms. It did'nt. So I went to another Uro who did'nt even examine me and just threw blood pressure pills at me cause it cured the symptoms in men, so he thought, "what the heck let's try it". Did'nt work. Ater throwing a major fit to the director of the uro department at Kaiser, I found a wonderful urogynecologist, who ran the whole gamut of testing on me (urodynamics, distension, cystoscopy, biopsy) and then due to having to relocate, Kaiser dropped me! So once I had my new insurance I went to my PCP and she was able to help me get my records from Kaiser, eventhough Kaiser took MONTHS to respond. Once we finally got my records my PCP automatically referred me over to my current Uro. My current Uro has me on 4 meds (elmiron, hyomax, cimetidine and atarax) right now to get my flares stablilized because I need to have surgery to repair my bladder prolapse. He as well as my rheumatologist, agreed that Fibro and IC are two of those things that go hand in hand...and they will be working together to help me feel better.

    My uro also gave me a dietary guide for IC. I feel very discouraged about that the most. For 30 years I've always looked forward to my morning cup of Joe and I also enjoy a diet coke in the afternoon, as well as an occasional glass of wine or cocktail with dinner. Giving up things like chocolate and onions as well as mexican and thai cuisine makes me sad But overall, I am satisfied with my current Uro, other than a quick pelvic exam he saw no reason to put me through any more BARBARIC testing/procedures and I like that. I am hoping too, that once my bladder is repaired that maybe I won't be as susceptable to flare ups. Is there anyone else here that has had a bladder prolapse repaired who could share some experience/knowledge with me? I'd really appreciate it. Now just taking things one day at a time.
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  • #2
    Donna

    Originally posted by DonnaBee View Post
    and I've been recently diagnosed with both IC, severe bladder prolapse and Fibromyalgia.

    My symptoms began over 20 years ago. Initially, doctors thought it was "frequent, recurrent UTI's" and treated me with antibiotics. When that failed, I was sent to a urologist who did a cystocopy in his office and told me I simply had a narrow urethra, and that having urethral dialation done periodically would "cure" my symptoms. It did'nt. So I went to another Uro who did'nt even examine me and just threw blood pressure pills at me cause it cured the symptoms in men, so he thought, "what the heck let's try it". Did'nt work. Ater throwing a major fit to the director of the uro department at Kaiser, I found a wonderful urogynecologist, who ran the whole gamut of testing on me (urodynamics, distension, cystoscopy, biopsy) and then due to having to relocate, Kaiser dropped me! So once I had my new insurance I went to my PCP and she was able to help me get my records from Kaiser, eventhough Kaiser took MONTHS to respond. Once we finally got my records my PCP automatically referred me over to my current Uro. My current Uro has me on 4 meds (elmiron, hyomax, cimetidine and atarax) right now to get my flares stablilized because I need to have surgery to repair my bladder prolapse. He as well as my rheumatologist, agreed that Fibro and IC are two of those things that go hand in hand...and they will be working together to help me feel better.

    My uro also gave me a dietary guide for IC. I feel very discouraged about that the most. For 30 years I've always looked forward to my morning cup of Joe and I also enjoy a diet coke in the afternoon, as well as an occasional glass of wine or cocktail with dinner. Giving up things like chocolate and onions as well as mexican and thai cuisine makes me sad But overall, I am satisfied with my current Uro, other than a quick pelvic exam he saw no reason to put me through any more BARBARIC testing/procedures and I like that. I am hoping too, that once my bladder is repaired that maybe I won't be as susceptable to flare ups. Is there anyone else here that has had a bladder prolapse repaired who could share some experience/knowledge with me? I'd really appreciate it. Now just taking things one day at a time.
    Hi Donna
    Sorry, I haven't had a prolapsed bladder repaired, just thought I would say hi.
    About the diet, I noticed you said you are using the diet your doctor gave you. Have you taken a look at the diet guide on this forum? It's very helpful and complete.
    I know what you mean about feeling frustrated about the diet restrictions, but after a while, with care, you may find that you can start adding foods back in, such as low-acid coffeee. There are also some good recipes here that use bladder safe foods in very creative ways.
    I'm glad you found a good doctor that you can work with, that makes all the difference.
    Keep us up to date,
    Laurie

    Comment

    • #3
      Hello and Welcome to the ICN, There are a lot of things on this web site that will help you with your IC journey.. If you need anything Just ask...
      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

      • #4
        I have had two bladder repair surgeries. Please do not let that scare you. Do you know how they are going to repair it? My first surgery was in 2000. Second surgery was in 2001. I can tell you more if you would like, but do not want to frighted you. I do have to say that the second one was done at a University hospital and it was the best thing I had ever done.

        Comment

        • #5
          I had a bladder prolapse repaired. It was not a horrible surgery (I've had lots of surgeries); I've never been sorry. I suspect that the blood pressure medication given you may have been cardura --- and it's been found that it helps significantly to relax the bladder muscles --- it's frequently given to men who find it difficult to urinate.

          It sounds like you are in the hands of capable physicians.

          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
            I'm not really afraid of the surgery, as I had a vaginal hysterectomy done 14 years ago and my uro told me he would make an incision to the anterior wall and place a sling in my abdomen and attach it to the abdominal wall to hold my bladder in place. I'm just curious if doing this will also improve my IC symptoms. Either way, I'm doing it cause the prolapse is really bad and to not have the profuse leaking anymore will give some improvement to to quality of my life.

            I also have a ? regarding Lyrica for IC because my Rheumatologist told me that he may prescribe that for me for Fibromyalgia if the flexeril isn't effective for my FM pain management. Does Lyrica help IC pain too?

            Comment

            • #7
              The reason why I ask what are they using for your surgery is because my first surgery was done with some type of mesh. The surgeon got it to tight. I had to self cathing for four months before he decided that he got it too tight. I would just make sure to ask before your surgery if this is something that you need to know. I was in the ER twice unable to emtpy my bladder in pain like I couldn't describe. After four months he reversed the procedure by clipping the mesh. Please remember this was about ten years ago and things have changed. I then went to a wonderful doctor at a university hospital in my state where he did the surgery again using my own tissue to support the bladder. This surgery was great. I didn't have to do any self cathing. I was 32 years old at the time, I was the youngest patient that he had ever done this surgery on. I did have other problems with the mesh, but I do believe the mesh that they used ten years ago is not what they use now. The mesh they used on me has caused many law suits for the makers of it. I am so much better then what I was. There were so many things that I wouldn't do or couldn't do because of it. It might take you a week or so to feel human again, but it is only short lived. In the long term it will be worth it. I was diagnosed with IC because of pain in my urethra, but I still think it is from the mesh. My symtoms are not like what I see on this web site. Just make sure to ask a lot of questions.

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