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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deleted_user 04/19/2008

I HAVE HAD IC FOR 20 YEARS WITH NO PAIN AND PROBLEMS. I HAVE RECCOMENDED DR. LARRIAN GILLESPIE BOOK "YOU DONT HAVE TO LIVE WITH CYSTITIS", EVEIAN WATER AND P5P A SPECIAL B6 PREP HAS KEPT ME MED FREE FOR 20 YEARS NOW. I NOTICE WHEN I POST THIS I DON'T GET MUCH RESPONSE AS IT IS THE LEAST PAINFUL WAY OF SUBSIDING SYMPTOMS FAST I WOULD THINK SOMEONE WANTS TO RELIEVE THEIR IC PAIN ASAP! BELIEVE. THIS BOOK/DIET GIVES ALL THE INFO.MESSAGE ME IF YOU HAVE ANY QUESTIONS.

deleted_user 04/19/2008

I'm sure we all definately want to "heal" IC pain. The question is, how many of our docs or uros will actually prescribe these meds??? My uro won't even mention anything except 3 meds I'm on and hyperdistentions 2 times a year... so now what?

deleted_user 04/20/2008

I am already trying some other natural remedies, have ordered
water alkalising drops and a multivitamin which included 50 mg of Vit B6 and magnesium.I hate the MD pushed drugs and also ordered from Amazon the book that you mention. Thank you for posting this, Here's a gulp of Evian to your health!

deleted_user 04/25/2008

I am newly diagnosed (February of this year). I am trying the Evian and am feeling better already. It has only been three days. Less urgency and burning. I was pretty miserable before, even with the two medications prescribed by my doctor. Thank you for your suggestion. I will look for the P5P also.

deleted_user 04/26/2008

I have read Dr. Gillespies book (lots of good info. The Interstitial Cystitis website also has information (and suggests some books with helpful information on how to eat, etc.). I've read that people with IC should not drink coffee, alcohol, etc (very irritating). I went to urologist many years (DMSO didn't help me, hydrodistention helped a little but for very short time). Some people claim they have infection deep in bladder tissue (see information on Dr. Fugazotto). Catherine Simone has written a book "Along the Healing Path" (read her story on internet).

deleted_user 04/27/2008

what is p5p and will the gp prescribe it? my 16yr old daughter was diagnosed with IC 6months ago after nine months of waiting. she has plans for her future which could be ruled out by IC. She is getting bladder instillations at mo and is only on her third treatment so we dont know if its working yer

deleted_user 04/27/2008

will be ordering the booklet asap.thanks very much for advice!

deleted_user 04/28/2008

Hi, thanks so much for sending this message. What is P5P a special B6 prep? I heard about Evian water. I am sending you my email address. tammyfb13@aol.com

Thanks so much.

deleted_user 05/01/2008

GOSH I WISH MORE PEOPLE WOULD GIVE JUST THE EVIAN A TRY IT WOULD BE AMAZING 2-3 LITERS A DAY IN THE BEGINING. AND YES YOU HAVE TO PEE ALOT BUT WHAT RELIEF.

SaraBB 02/13/2021

Hi!
I have a question about the Evian...you mean the bottled water? Thanks

Triple-S 11/07/2022

Amazing website

Ichelp.org

Triple-S 11/07/2022

ICHELP.ORG

Iv

Triple-S 11/07/2022

ICHELP.ORG

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