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Interstitial Cystitis (ICN) Support Forum
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| Welcome to the Interstitial Cystitis (ICN) Support Forum. |
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If this is your first visit, be sure to check out the FAQ by clicking the link above.
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Interstitial Cystitis News & Updates
Read the latest interstitial cystitis news here!
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Read the latest announcements about the Interstitial Cystitis Network here. From new site additions to newsletter releases, this is the place to get the latest ICN news!
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09-03-2010 07:42 PM
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504 |
3,760 |
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New announcements from the urology, medical and health care industry.
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Yesterday 04:05 PM
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7 |
59 |
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Read the latest research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction, prostatitis & overactive bladder here!
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08-23-2010 02:47 PM
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170 |
1,712 |
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08-22-2010 08:11 PM
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18 |
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Review recent recalls of products, drugs and related materials
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08-13-2010 11:23 AM
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696 |
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Help us raise awareness for IC!
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08-31-2010 02:39 PM
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128 |
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ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
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08-29-2010 04:45 AM
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3,339 |
Patient Stories
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Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
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Today 11:37 AM
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2,397 |
20,418 |
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Introduce Yourself and share your interstitial cystitis story here!
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Today 08:17 AM
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5,568 |
44,922 |
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Share your Interstitial Cystitis Success Story Here
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Today 06:52 AM
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736 |
8,013 |
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Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
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08-31-2010 08:41 AM
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228 |
2,821 |
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Are you a newly diagnosed man? Meet others here!
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09-03-2010 02:50 PM
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239 |
1,598 |
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For parents of children with interstitial cystitis, we hope that you'll network with each other here and ask questions that you are struggling with!
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08-28-2010 04:26 PM
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78 |
699 |
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Just for high school students with IC
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08-13-2010 08:04 PM
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671 |
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Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
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08-29-2010 06:29 AM
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Read more IC Patient Stories here! This links to another section of our website
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Diagnostic Methods For Interstitial Cystitis
The diagnosis of interstitial cystitis has changed in recent years to include less invasive methods such as the PUF questionnaire and KCL test! Learn about more methods here!
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Yesterday 02:35 PM
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1,486 |
12,816 |
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09-02-2010 03:44 PM
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3,139 |
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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Today 11:42 AM
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1,699 |
12,963 |
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Today 07:37 AM
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2,826 |
22,840 |
Treatments For Mild Interstitial Cystitis (frequency/urgency)
Research has shown that the earlier you diagnose and treat IC, the better chance you have to control IC. We're classifying mild IC as someone with just frequency or urgency (no pain) who have occasional flares. These are the easiest, least invasive therapies usually used first! They are the foundation of therapy for most patients. For more information on these treatments, please visit the ICN Patient Handbook.
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Elmiron, a protective bladder coating, is an oral medication that helps rebuild the bladder lining. Discuss it here!
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Yesterday 02:46 AM
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1,439 |
12,126 |
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Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
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Today 08:12 AM
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173 |
1,174 |
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Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
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09-02-2010 06:10 AM
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571 |
4,244 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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Today 07:09 AM
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1,211 |
9,395 |
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Discuss the use of food supplements here!
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09-02-2010 03:20 AM
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489 |
2,895 |
Treatments For Moderate Interstitial Cystitis IC/PBS
We're classifying moderate interstitial cystitis as patients who experience episodes of frequency/urgency/pressure or pain. They may have diagnosed pelvic floor dysfunction as well. The therapies listed below may be used IN ADDITION to the therapies used for mild IC. Many patients find results using a combination of therapies, such as a low dose antihistamine and rescue instillations. For more information on these treatments, please visit the ICN Patient Handbook.
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Yesterday 03:06 PM
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The "newest" instillations used for interstitial cystitis patients, these are also called anesthetic cocktails. Some doctors report an 80 to 90% success rate. This therapy is rapidly growing in popularity
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Today 12:33 PM
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4,828 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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09-03-2010 07:54 PM
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1,082 |
8,322 |
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Yesterday 02:24 AM
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Treatments for Severe Interstitial Cystitis
We're classifying severe interstitial cystitis (IC/PBS) as someone who has had IC symptoms for an extended period of time and has constant frequency, urgency, pressure or pain. These patients may be using a combination of mild and/or moderate therapies. The far more invasive treatments listed below can be tried if the mild or moderate therapies don't work. For more information on these treatments, please visit the ICN Patient Handbook.
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Though nerve stimulation is not FDA approved for the treatment of interstitial cystitis, patients have had procedures (Interstim & SANS) suggested to them if other treatments aren't helpful. Ask your questions here!
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09-02-2010 08:36 AM
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2,760 |
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For patients currently undergoing trial or surgical procedures.
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Today 07:21 AM
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368 |
3,755 |
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Share your success stories here!
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07-25-2010 01:00 PM
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264 |
1,897 |
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For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
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08-23-2010 12:13 PM
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350 |
2,997 |
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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08-11-2010 11:57 AM
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Experimental or Controversial Treatments
Experimental therapies for interstitial cystitis (IC/PBS) are those currently being explored in research studies around the world. Their clinical trial results may not be available or are the result of a smaller, less credible study. We've included antibiotics in this discussion area because the role of bacteria in IC remains controversial at best. We have little conclusive evidence that IC is bacterial in nature.
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08-18-2010 09:54 AM
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Today 09:39 AM
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Learn more about treatments currently being studied.
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08-30-2010 04:10 PM
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Cytotec is a synthetic prostaglandin used to help treat and prevent stomach ulcers. One small study showed that it may help treat severe IC that hasn't responded to other therapies. However, there are risks for women of childbearing age.
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08-30-2010 05:17 AM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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08-25-2010 07:25 AM
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435 |
4,731 |
Treatments For End Stage Interstitial Cystitis
Very FEW patients actually have end stage IC (the most severe form of IC) but for those that do, their bladders can have major issues. They may also have conditions impacting their bladders unrelated to IC. For more information on these treatments, please visit the ICN Patient Handbook. Patients newly diagnosed with IC should NOT worry that they will develop this worst form of IC. Most patients with end stage IC received little, if any, therapy for IC for a long period of time. Before attempting any of these potentially life altering procedures, end stage patients should have have attempted MOST (if not ALL) of the therapies for mild, moderate and severe IC listed above, as well as the current experimental therapies available! Don't forget the importance of pelvic floor assessments and treatments as well. It would be tragic to remove your bladder when the problem was primarily from the surrounding muscle instead. BE AS PROACTIVE AS YOU CAN! Don't let desperation lead you to an extreme therapy if you still haven't tried some of the more mild therapies first!
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Discuss augmentation, ostomies and related procedures here
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08-29-2010 07:21 AM
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127 |
1,150 |
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Bladder removal is NOT an easy or convenient therapy for IC. It is a last resort to be used ONLY by those who have failed all other therapies.
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09-03-2010 08:01 AM
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6,516 |
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08-13-2010 06:03 PM
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This forum is for patients who have many issues going on besides IC that are contributing to their illness.
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08-20-2010 05:16 AM
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2,513 |
Miscellaneous Treatments For Interstitial Cystitis
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Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
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Today 12:18 PM
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1,149 |
8,831 |
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09-02-2010 01:59 PM
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5,460 |
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Patients now struggle to afford many medications. Share your stories here.
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08-24-2010 10:07 AM
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145 |
1,119 |
The IC Diet
Discuss all things related to the IC diet here!
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Ask questions about diet and interstitial cystitis IC/PBS here!
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Today 08:30 AM
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4,529 |
33,677 |
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We're looking for cool, refreshing IC friendly recipes to help satisfy our thirst during the hot summer months!
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08-21-2010 12:01 PM
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35 |
107 |
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Share your favorite IC friendly recipes and menu ideas here!
Sub-Forums: Breakfast & Brunch, Sandwiches, Burgers & Pizza, Sauces, Marinades & Dressings, Main Dishes, Casseroles, Vegetables & Side Dishes, Appetizers & Snacks, Salads and Soups, Breads, Muffins and Scones, Desserts, Hot Drinks, Cold Drinks, Cookies & Candy, Cocktails
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Yesterday 04:42 PM
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2,867 |
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08-10-2010 07:25 AM
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40 |
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Prelief has been used by patients for several years. How does it work? It reduces the acid content of food. Talk with Betty about how Prelief has improved the lives of IC patients!
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07-30-2010 07:58 AM
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360 |
2,504 |
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Read columns on the IC diet by Bev Laumann, author of "A Taste of the Good Life: A Cookbook for an IC Diet."
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Find recipes that IC patients have submitted that could add some diversity to your diet
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Self-Help For Interstitial Cystitis
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08-28-2010 12:05 PM
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374 |
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Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
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08-22-2010 05:43 AM
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126 |
965 |
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Discuss your thoughts and concerns about depression and anxiety here.
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09-02-2010 04:36 PM
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911 |
9,631 |
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09-02-2010 02:54 PM
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444 |
3,646 |
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Yesterday 07:28 AM
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364 |
2,848 |
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If you're interested in stopping smoking and would like to support others, please post here! You can do it!
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08-18-2010 11:17 AM
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170 |
1,714 |
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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Yesterday 11:18 PM
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717 |
5,305 |
Managing Interstitial Cystitis Flares
An interstitial cystitis flare is a familiar and frustrating part of life with IC. Often the result of diet or romance, flares can be reduced and eliminated with several strategies.
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Discuss pain management strategies here!
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Today 07:18 AM
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2,266 |
20,646 |
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Are you in a flare? Need support? Post here!
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09-03-2010 10:16 AM
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2,754 |
21,841 |
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Please share your best interstitial cystitis flare coping strategies here! This is NOT to post questions about treatments, therapies or managing flares. We JUST want to hear great techniques for handling flares!
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09-02-2010 09:57 AM
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590 |
5,209 |
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What gets you motivated? Share your ideas and your wisdoms with others.
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06-21-2010 12:17 PM
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327 |
1,730 |
Related Conditions to Interstitial Cystitis
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IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
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08-15-2010 12:33 PM
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518 |
3,501 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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08-30-2010 12:29 AM
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82 |
470 |
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Discuss fibromyalgia here.
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08-27-2010 04:53 PM
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35 |
269 |
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Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
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Today 07:12 AM
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55 |
585 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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09-03-2010 11:00 AM
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815 |
6,251 |
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Dry mouth & dry eyes can be side effects of various medications. Some IC patients may also have Sjogren's Syndrome or Sicca. Discuss your best strategies here!
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08-23-2010 03:04 AM
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130 |
841 |
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Yesterday 06:27 AM
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281 |
2,431 |
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Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
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09-01-2010 01:02 AM
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1,603 |
12,236 |
Pregnancy and Motherhood With Interstitial Cystitis
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09-02-2010 07:41 AM
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366 |
2,422 |
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Share your ideas for some child activities that you can do when your IC flaring.
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04-02-2010 04:20 AM
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15 |
43 |
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09-02-2010 12:29 PM
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542 |
5,312 |
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When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
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08-18-2010 01:08 PM
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451 |
3,975 |
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If you are an IC patient struggling with fertility, share your thoughts here!
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08-18-2010 01:07 PM
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54 |
358 |
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08-15-2010 02:42 PM
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18 |
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Health Insurance Discussions
Are you struggling with health insurance? Don't have insurance?? Looking for drug assistance programs??
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Is this a can of worms or what?? Ask questions or discuss any issues you might have with your health insurance coverage
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07-19-2010 09:42 AM
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1 |
9 |
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Are you in the military and seeking care?
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05-10-2010 11:58 PM
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1 |
7 |
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Some medications are available at no cost through pharmaceutical companies. Share your experiences or questions here!
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07-21-2010 12:10 PM
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4 |
7 |
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05-26-2010 04:14 AM
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252 |
1,517 |
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Share your ideas with others on getting health care if you lack coverage. Free clinics?? Pay per visit?? How are you coping?
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07-23-2010 09:07 AM
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Social Life - Family, Friends, Dating
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09-02-2010 04:31 PM
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146 |
1,146 |
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Yesterday 03:16 AM
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1,223 |
11,440 |
GREAT DEBATES
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While research hasn't found one specific cause of interstitial cystitis, there are several strong opinions out there. What do you think about the cause of IC? Any ideas? Debate them here!
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Yesterday 01:49 AM
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3,037 |
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One of the long standing debates is the validity of the KCL test to diagnose IC rather than the more intensive hydrodistention. What do you think?
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09-02-2010 05:34 AM
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28 |
MEET OTHERS BY REGION
This section of the ICN Forum is dedicated to Michaeleen Franklin, the longest running IC support group leader in the USA. We honor her memory, her compassion, her wisdom and her support of patients in the Southwestern USA for more than twenty years.
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Find patients in your neck of the woods!
Sub-Forums: Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, DC, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming, Northeastern States, Southeastern States, Plains (Central) States, USA - Southwestern States, USA - California & Hawaii, USA - Northwestern States, USA - Midwest/Rocky Mountain States
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Today 08:14 AM
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1,821 |
8,695 |
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Click here to view our database of support groups and medical care providers.
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Meet others from Canada Here!
Sub-Forums: Alberta, British Columbia, Manitoba, New Brunswick, Newfoundland, Northwest Territories, Nova Scotia, Nunavut, Ontario, Prince Edward Island, Quebec, Saskatchewan, Yukon
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Today 07:09 AM
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144 |
1,003 |
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10-21-2009 01:43 AM
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19 |
186 |
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02-05-2010 11:21 AM
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2,013 |
SPIRITUALITY, FAITH & POSITIVITY
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08-31-2010 08:00 AM
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1,296 |
19,026 |
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Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
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06-21-2010 12:15 PM
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754 |
6,656 |
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For those times when you just need to surround yourself with happiness, these posts will help. Please share any videos, blogs, poems that you think will lift peoples spirits!
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Today 06:44 AM
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979 |
MISC.
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08-28-2010 11:11 AM
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207 |
1,690 |
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08-19-2010 05:10 PM
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137 |
7,074 |
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Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
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08-01-2010 12:31 PM
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68 |
274 |
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Are you a member of AA or NA? Your experience can inspire and encourage other patients who hope to make a life change. Chat about it here!
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06-21-2010 12:14 PM
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600 |
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Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
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09-03-2010 03:59 AM
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257 |
2,249 |
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Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
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09-02-2010 11:07 AM
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643 |
4,377 |
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Because IC is only a part of our lives.
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09-03-2010 03:44 AM
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1,878 |
18,484 |
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A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
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07-12-2010 03:04 AM
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110 |
744 |
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A "Spot" for sharing pet "tails"
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08-14-2010 11:33 AM
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488 |
4,878 |
BOARD MGT.
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For Questions About BBS Management & TOS Inquiries
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06-17-2010 04:41 AM
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143 |
790 |
EOSINOPHILIC CYSTITIS
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The ICN is proud to host the Eosinophilic Cystitis Resource Center!
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08-18-2010 08:13 AM
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267 |
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Forum Contains New Posts |
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Forum is Closed for Posting |
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All times are GMT -11. The time now is 12:36 PM.
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