I have interstitial cystitis also just diagnosed 😢

Hello everyone,

On December 11, I had a procedure done that included a cystoscope with the fluid. Well, it came back positive. My bladder was lit up like a Christmas tree. I always suspected I had it but I wasn’t really sure. I’m now on two more medications though I think the Ubel antibiotic is just to prevent infection after the procedure I’m not sure. If anyone who has PN and IC. Could be so kind and private message me. That would really nice. I could use some advice. Thank you. God bless us. Deb.

4 Replies

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  • Try supplementing with magnesium glycinate.

    I have pelvic floor dysfunction which presents similar symptoms like burning, frequent and urgent urination amongst other things. Since I started taking magnesium all those symptoms have pretty much gone! I started on 300mg split throughout the day and I've upped the dose by 100mg every week. I'm on 500mg daily at the moment and I have never felt better!

    Check out this link about magnesium deficiencies

    bodyunburdened.com/magnesiu...

  • Hi Debra,

    I had IC AND PN. There's some good support groups where you can get helpful information. IC Network based in USA and Bladder Health UK, I'm the Scottish group co-ordinator. They both have loads of information on their web- sites.

    The antibiotic nust be for cover following your cystoscopy. IC is not caused by bacteria so antibiotics won't work for this, however having IC doesn't rule out having bacterial cystitis too unfortunately!

    Some people find the IC diet helpful at keeping symptoms under control. There are also bladder instillations which can help.

    I'll try to private message you.

    Anne.

  • Before I had my bladder removed in 2008, I had suffered I.C for years , I used to go at one time when I still had my bladder for what was called d.m.s.o instillations at the hospital , I found it a painful thing to gave done but it used to be worth it for the few months of relief I would get

    Unfortunately a really bad virus that caused a dreadful specific water infection damaged my bladder so much and I was in permanent agony from it resulted in me having my bladder removed

    ( not something they do lightly)

    It stopped the bladder pain , however I now have scar tissue pain! As it went keloid , I also still have the feeling of wanting a wee all the time because you still have the nerve in your back that controls bladder and bowel ( can't remove that !)

  • Thank you for the reply. What are bladder installations? I’m sure they do them in the US. Right now I need to concentrate on finding a good doctor to treat me in New York. I’m really nervous because I feel like I’ve probably had this for years now and the doctor who diagnosed me confirmed my fear that i have been walking around with it for years now. 😿 God Bless Deb

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