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  • Re introducing myself...

    I haven't been on this site for a few years. I came here as a result of constant feeling of a UTI, burning pressure, frequent urination..then I went to a uro and he suggested a cysto with a biopsy. After the procedure, I was in horrific pain, much more than before...no pain pill would even ease it.

    Went back to the hospital where procedure was done. They did a test on me and told me my bladder was nicked during the cysto from the biopsy. They put me on morphine and admitted me to the hospital. After a day, the uro said he had to either go in and fix it surgically, or I had to go home with a cath for two weeks to heal and it may not heal without surgery. I opted like a fool for the surgery because we were leaving on a cruise two weeks later. When I awoke from surgery, he told me that he didn't need to fix my bladder becuase it was already healed. WHAT? So I had my stomach cut open for nothing. Till this day, I have a horrible scar with bumpy scar tissue and a fold of skin over the scar. I was never charged for the one week stay in the hospital, the surgery, the cystoscopy, the OR, the doctor visits daily in the hospital, nothing. He never apologized to me. People tell me I could have sued him, but I'm not the type to do that, also he said my bladder was quite red, he showed me the pictures of it during surgery and it was. He said my bladder wall was thin...but couldn't he have seen that and decided not to do the biopsy? I went on Elmiron for a few months (then he told me to get off it) after feeling much better. But I had urethal burning and vaginal burning and dryness, painful intercourse that continued. He never said I had IC, but he said I had a red bladder.
    My family doc continued to treat me with Estrace, which I hated because it's a cream. I used it for a short while. Things would get better but my sex life was over. Any attempt of having sex would put me into a flare up, burning vulva, pain.

    Fast foward till this past April. I got off a chair and got an achey feeling in my left buttocks and down my leg. I have gotten mild achiness with vulvadinia. (which my the way I was diagnosed with) I also have fibro since 1995. And sever neck pain that lasted 18 months after three epidurals, I just gave up and finally it eased. I still have to be careful not to hurt it.

    The past few months since that day I got off the chair has been hell. I cannot sit on my buttocks..at first I thought it was nothing and it will go away, then it got worse. Then I thought it was my tailbone. I went to the doc who sent me for an MRI,(showed a tear and no impingement) then to therapy..which I did about six to eight sessions. I went to a chiropractor for four or five sessions. I have tried heat, ice but cannot sit for long, I get stinging feeling in my leg, pain around the sacram when I sit and feelings of nerve pain, with a low back ache. Nothing has worked. Went to a pain doc who gave me a numbing shot to see if it would help so he would know where to place the epidural. It did nothing. Sometimes when I get up from bending the pain is worse..it's a deep ache, burning and tingling in left buttocks and down leg till almost the back of the knee.

    I have been back to bad eating habits,drinking red wine for two years. I'm so depressed and I know some of you have it a lot worse than me, so I hate to cry and complain but I need some support. What do I do next?

    I have read from some posts that you do Yoga and that helps. I can start that up again...was doing that a couple of years ago...when I felt good. Between the fibro, neck pain and vulva pain, now this...I am wondering if this is all related somehow.

    Any feedback is appreciated. I understand you are not doctors and that I should seek further medical help..but I thought maybe some of you can give me ideas or suggestions and what it could be from what you have experienced. Please help! Thank you. Dianne

  • #2
    My suggestion is to go back to the doctor who ordered the therapy and let him/her know it didn't work. Physican therapy is frequently tried for joint or back problems before further treatment is considered. If you aren't feeling comfortable with what you're being told, then a second opinion may be the direction you should think about.

    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/

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    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

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    • #3
      What about accupuncture ? Im sorry your in so much pain Its so frustrating being at a loss and not knowing what is going on inside us!...
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

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