ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction
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Currently Active Users: 732 (15 members and 717 guests)
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Most users ever online was 32,261, 08-31-2011 at 07:00 AM.
agilityme, cat2010, cydayqual, Ducky31, icnmgrjill, Lisafliny, louise, Madi's Granny, needsrelief, Rope_Wrench, Shachidian, Silverfox, Stella1609, SuziQ64, ter71
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ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction Statistics
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Threads: 66,727, Posts: 547,243, Members: 51,490
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| Welcome to the ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction. |
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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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Yesterday 07:45 AM
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4,170 |
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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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Yesterday 12:15 PM
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New announcements from the urology, medical and health care industry.
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Today 05:23 AM
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Review recent recalls of products, drugs and related materials
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01-25-2012 09:28 AM
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Today 02:22 PM
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ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
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Yesterday 05:51 PM
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Help us raise awareness for IC!
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Today 08:20 AM
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Find the best books and resources in the ICN Shop, purchases from which support this free forum! Please shop with us!
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01-19-2012 12:15 PM
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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 09:51 AM
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3,210 |
25,954 |
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Introduce Yourself and share your interstitial cystitis story here!
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Today 09:24 AM
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48,048 |
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Share your Interstitial Cystitis Success Story Here
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01-30-2012 10:03 AM
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8,987 |
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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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Today 12:17 AM
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271 |
3,293 |
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Are you a newly diagnosed man? Meet others here!
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Today 11:30 AM
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293 |
2,086 |
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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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12-29-2011 04:44 PM
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793 |
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Just for high school students with IC
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12-23-2011 01:34 PM
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Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
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01-30-2012 06:44 AM
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1,821 |
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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 01:26 PM
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1,636 |
14,137 |
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01-23-2012 02:43 PM
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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Today 10:41 AM
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14,539 |
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Today 08:18 AM
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3,261 |
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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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Today 02:41 AM
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13,380 |
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Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
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Today 06:12 AM
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295 |
2,051 |
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Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
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Today 11:11 AM
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4,724 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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Today 05:59 AM
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10,300 |
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Discuss the use of food supplements here!
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Yesterday 12:34 PM
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3,697 |
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 05:42 AM
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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 03:30 AM
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5,794 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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Today 01:21 PM
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8,810 |
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01-30-2012 04:30 PM
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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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Discuss your experience with or questions about PTNS (i.e. SANS or Urgent PC) here!
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11-04-2011 04:01 AM
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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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01-26-2012 03:33 PM
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2,871 |
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For patients currently undergoing trial or surgical procedures.
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01-07-2012 05:08 PM
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3,890 |
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Share your success stories here!
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Today 07:00 AM
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1,974 |
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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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01-12-2012 08:02 PM
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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01-13-2012 11:29 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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01-01-2012 04:51 PM
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01-24-2012 04:54 PM
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Learn more about treatments currently being studied.
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Yesterday 09:14 PM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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Today 02:26 PM
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4,987 |
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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Yesterday 09:59 AM
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1,207 |
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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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Yesterday 08:13 AM
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12-13-2011 12:00 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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01-23-2012 02:24 PM
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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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Yesterday 02:40 PM
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01-31-2012 04:47 AM
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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 05:59 AM
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5,088 |
37,303 |
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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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01-28-2012 02:13 PM
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3,788 |
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01-23-2012 03:30 PM
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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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01-20-2012 02:37 PM
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2,622 |
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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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Self-Help For Interstitial Cystitis
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Yesterday 02:05 AM
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544 |
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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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Today 02:57 PM
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164 |
1,194 |
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Discuss your thoughts and concerns about depression and anxiety here.
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Today 02:41 AM
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1,023 |
10,579 |
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01-23-2012 09:57 AM
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480 |
3,883 |
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01-26-2012 06:29 AM
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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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01-30-2012 09:29 AM
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2,472 |
22,010 |
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Are you in a flare? Need support? Post here!
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Today 02:17 AM
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3,051 |
23,869 |
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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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01-11-2012 10:27 AM
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5,388 |
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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12-13-2011 06:30 PM
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549 |
3,686 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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01-21-2012 09:03 AM
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103 |
581 |
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Discuss fibromyalgia here.
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01-31-2012 08:36 PM
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62 |
489 |
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Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
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01-31-2012 06:57 AM
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861 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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Today 11:28 AM
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6,544 |
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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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01-19-2012 05:10 PM
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01-16-2012 06:50 PM
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Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
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Today 05:26 AM
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1,741 |
12,911 |
Pregnancy and Motherhood With Interstitial Cystitis
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01-02-2012 12:28 AM
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389 |
2,576 |
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Share your ideas for some child activities that you can do when your IC flaring.
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12-15-2011 09:29 AM
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59 |
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01-18-2012 07:10 AM
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591 |
5,667 |
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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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Yesterday 04:14 PM
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466 |
4,037 |
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If you are an IC patient struggling with fertility, share your thoughts here!
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09-16-2011 12:42 PM
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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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01-21-2012 05:00 AM
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47 |
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Are you in the military and seeking care?
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07-20-2011 05:19 PM
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Some medications are available at no cost through pharmaceutical companies. Share your experiences or questions here!
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06-17-2011 09:03 AM
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08-18-2011 11:09 AM
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1,532 |
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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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01-21-2012 04:49 AM
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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01-31-2012 05:49 AM
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759 |
5,575 |
Social Life - Family, Friends, Dating
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Today 08:36 AM
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Today 12:46 PM
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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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Today 02:30 PM
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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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12-22-2011 08:41 PM
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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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01-30-2012 07:47 PM
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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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02-01-2012 11:57 AM
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SPIRITUALITY, FAITH & POSITIVITY
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01-31-2012 01:49 PM
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1,351 |
19,474 |
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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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01-18-2011 06:14 AM
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6,661 |
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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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01-25-2012 07:03 AM
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1,143 |
MISC.
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12-15-2011 05:46 AM
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1,824 |
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01-17-2012 09:05 PM
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7,128 |
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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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11-29-2011 06:26 PM
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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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01-25-2012 11:52 AM
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2,343 |
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Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
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12-12-2011 03:37 PM
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Because IC is only a part of our lives.
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01-16-2012 06:32 PM
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19,063 |
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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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09-16-2011 12:58 PM
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A "Spot" for sharing pet "tails"
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01-27-2012 09:24 PM
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5,216 |
BOARD MGT.
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For Questions About BBS Management & TOS Inquiries
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02-01-2012 06:29 AM
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844 |
EOSINOPHILIC CYSTITIS
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The ICN is proud to host the Eosinophilic Cystitis Resource Center!
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04-02-2011 02:22 AM
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