Oh geez.. I didn't even notice that. Listen guys, IC research is very clear. That once IC is diagnosed and treated, most patients do NOT appear to progress. It's that period before diagnosis and treatment when symptoms generally worsen for most patients and that is very true for me. My IC, today, is so much better than it was before I was diagnosed due, in great part, to diet management, some successful treatments and I really know what to do know to nip a flare in the bud.
I think if you look at the guest lecture by Dr. Parsons and/or his video from the San Diego Conference, he says that clearly! http://www.ic-network.com/videos/
Yes, sadly, a small percentage do progress but, in some cases, that's related to a delayed treatment often for years, other extenuating factors and/or related conditions, some patients who absolutely refuse to stop irritating their bladders or ulcers by modifying their diet, etc. etc. I'm super tired right now.. but I hope that makes sense and that I'm not offending anyone.
Jill
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Now Available!!! The Better Bladder Book by Wendy Cohan RN
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Needs Relief, don't blame yourself. IC is very unpredictable. For most of us it progresses.....until it doesn't. For those who really benefit from the IC diet and who have been staying on it faithfully, it is totally unknown whether they would have gotten worse or not; all they know is that it helps them feel better. So persevere in finding a treatment that gets you some relief and give yourself a break.
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I wish I treated my IC earlier on, cause it probaly wouldnt have progressed. i was in denial for a while and thought that it would get better on its own or I would adjust cause it wasnt so bad at first.
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Dyno (Jolene) and I were diagnosed at about the same time --- and, if anthing, I'm better than I was at diagnosis. My IC did it's progressing during the months before my diagnosis, but has not worsened since then.
Donna
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marar76
IC was progressive in my case. Im way worst than I use to be. so its possible.
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It does sound good.
As far as the progressiveness of IC. For me, I have been diagnosed for 36 years. I was in high school when diagnosed. Most of the time I am better than when I was diagnosed because there are so many more treatments and I have found what works for me.
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That's great BUT, what's up with the "often progressive" part? I keep being told on this board that it's a very small percentage of people? Yikes!
Rachael
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Sounds like a very informative book --- and not expensive either.
Donna
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Now Available!!! The Better Bladder Book by Wendy Cohan RN
New Release (02/11) Author Wendy Cohan, a registered nurse, has written a comprehensive resource guide for patients struggling with IC/BPS who are interested in more holistic alternative strategies for treatment. She is the first author to explore, in depth, the role of food sensitivities and gluten intolerance (celiac disease) and how these can contribute to bladder symptoms. Beautifully written, easily readable with a keen insight into IC brought by the authors own successful battle with IC. She includes numerous patient stories and experiences as well.
When Wendy Cohan, a registered nurse, was diagnosed with the painful, chronic disease interstitial cystitis (IC), she experienced firsthand the frustration millions of patients with IC feel when attempting to find effective, lasting relief. Her extensive research and commitment to recovery led to her becoming pain- and symptom-free. She is now dedicated to sharing this kind of life-changing relief with others.
Cohan begins by providing a clear understanding of how a diagnosis is made. She then explores the possible causes of symptoms, providing options for positive changes you can implement. She explains frequently prescribed medications and procedures and then picks up where common medical approaches leave off to discuss:
- food sensitivities, including the dramatic relief many experience from eliminating the dietary protein gluten, found in specific grains
- hormonal imbalances that affect women with bladder issues and pelvic pain
- medicinal herbs, teas and sleep aids that work safely and effectively to promote healing
- stress reduction techniques that can alleviate symptoms, including pain, urinary hesitancy and bladder and pelvic floor spasms
Cohan’s techniques target not just freedom from pain and inconvenience, but also life-long, whole-body healing and well being.
Read more about it at:
http://www.icnsales.com/product.php?...6&cat=0&page=1Last edited by icnmgrjill; 02-17-2011, 08:59 PM. Reason: removed "often progressive" from descriptionTags: None
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