Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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  • papelle

    skene gland - help please!

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    Hello.  I've been diagnosed with IC but frankly, I've always thought it was a misdiagnosis as my symtoms are a bit different and I've had two cystoscopies that have shown nothing wrong with my bladder.  I've also been to two pelvic physios who have said that my pelvic floor is also fine.  I did some googling as my problems seem to be centred around my gspot and urethra (rather than bladder)...
  • Hi, I've posted before but please, if there is anyone out there that has been diagnosed with IC but DOES NOT have bladder lining issues, can I hear from you?  I do not understand what is going on with me...I have the feeling of intense need to pee that gets very painful but have had two cystoscopies that have shown nothing wrong with my bladder.  It also hurts to orgasm which also seems to...
  • powers4

    First hydroistention

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    So I've got to have another hydroistention in November.  The last time I had one I woke up from anesthesia I was very sore and feeling the need to urinate which I did but nothing came out. So I guess that was bladder spasms from the procedure.  What can I do to mental prepare myself for this again? Is there anything I can ask the Dr to do to help with this?   The sensation calm down after I...
  • Tom30458

    I'm Tired of Living With IC

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    https://youtu.be/1aKUEzSVEZU
  • https://youtu.be/YWUj9v6ZZF0
  • deleted_user

    Baking soda to ease flare-up?

    I have heard drinking a mixture of baking soda and water will ease the pain of an ic flare up...is this true? Does anyone have the recipe (if it is true)? If this is not true, are there any suggestions that will give me some relief? Thanks so much~
  • MFehrenbach

    Meal ideas while traveling

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    Hi! I am new to the his group and have IC.  I was in remission for a year, and this summer the flair ups started up again. I am going on an airplane flight and don't know what to pack or to ask for to eat.  Also, any restaurant recommendations?ThanksJerseygirl
  • deleted_user

    There is hope

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    Hi....I belong to this group, but haven't been here for a good while.....the reason for that is that my IC is all but gone. What I have left is still the need to go a bit more often than normal, but not much. I got IC when I was 43 years old......and I did not see how I could stand to live. I had horrible pain, as you all know, and frequency (60 times in 24 hours)....had to be sedated to get...
  • stpaulmom

    Botox for incontinence and urgency with ICAnyone

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    I'm scheduled for Botox injections on June 30. I'm looking for advice from anyone who's had this done. Did it work for you? Would you do it again? I'm getting nervous as it gets closer. Thanks for any input
  • MFehrenbach

    I'm new to group

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    I'm new to this group.  I was diagnosed with IC November of 2015. After following the diet with no relief, I had some bladder installations. They seemed to help and I had no pain and was able to resume a normal lifestyle.  In the last three months the flare ups have started again.  I've tried to follow the diet as best as a I can, and have had two bladder instilations, but still no relief....
  • cbski

    Looking for OBGYN with knowledge of IC

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    Eventually my husband and I are going to want to start a family and I am absoultely terrified of being pregnant with IC. My current OBGYN doesn't have that much knowledge with it and the OBGYN that my Urogynocologist recommended is far from us. Can anyone recommend one in the Ocean County area (NJ). Please advise. Thank you kindly!
  • jptexas

    Can i.c. cause intense cramping?

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    Went to e.r. and still in intense pain.  I have a really bad yeast infection...which on here user can cause big flare which I am in right now.  I came home and threw up and lost bladder control.  I need a referral before I can go to urologist which I will get this week but holidays and huge flare...in meantime, any advice?
  • kindra98

    Back Pain: IC flare up caused by stress

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    i was diagnosed 3 years ago with IC, and my trigger is stress. When I get a flare up my urethra burns so bad I can't walk, my bladder swells because of the tenseness of nerves, and at that point it triggers something in my back. My back aches so bad I almost feel paralyzed and I scream in cry in pain. If anyone expierences severe back pain from IC like I do and know how to get it to stop hurting...
  • margiegow

    Its a relief to put a name to my problem

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    By all accounts, and prior to tests at my local hospital next week, it seems all my symptoms are IC.  Of course it is an unknown 'disease' till one searches for all their symptoms on Google, and suddenly the answers come up on screen as to why one has been feeling this way.  It is such a relief to know that the unbearable pain in my abdomen which comes occasionally but means i have to lie down...
  • SarahDawn86

    New here.....pending diagnosis

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    For the past 3 months I have been to the doctor for urinary pain that feels like a UTI but I keep testing negative.  At my last appointment my doctor said she thinks I may have IC.  Since then, I have been doing my research online on the subject and have worked myself up about how bad this prognosis may be.  My doctor recommended trying natural remedies first before trying the prescription...