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ICN - Interstitial cystitis information & support
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| What's Going On? |
Currently Active Users: 120 (8 members and 112 guests)
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Most users ever online was 1,029, 11-01-2006 at 06:18 AM.
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ICN - Interstitial cystitis information & support Statistics
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Threads: 52,410, Posts: 447,291, Members: 36,927
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Today's Birthdays
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Greengirl, momela, BarbaraC, Ms. Firecracker, Bean (73), zwr (67), Pat Pastino (66), SittingPain (66), pamela-s (56), kawgirl (56), cheryl k (53), jerseygirl (51), sawhammy (49), jasam (47), vegasbaby (46), gvanpatten (31), SaraNicole (31), charlsc (28) |
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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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Today 02:21 AM
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3,390 |
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Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
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Today 01:16 AM
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1,282 |
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Review recent recalls of products, drugs and related materials
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07-01-2009 01:58 AM
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ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
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06-23-2009 09:28 AM
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2,951 |
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Are you a WOW fan?? Want to hang out in an IC guild and make friends??
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06-15-2009 04:32 AM
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Share Your Interstitial Cystitis Story
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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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06-30-2009 02:14 AM
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Introduce Yourself and share your interstitial cystitis story here!
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Yesterday 09:58 PM
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4,855 |
39,695 |
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Share your Interstitial Cystitis Success Story Here
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Yesterday 10:53 AM
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7,051 |
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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 05:28 AM
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17,234 |
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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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Yesterday 05:41 AM
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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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Yesterday 03:57 AM
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06-28-2009 09:49 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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Today 01:57 AM
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1,324 |
11,640 |
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Yesterday 04:04 AM
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382 |
2,878 |
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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Yesterday 03:42 PM
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1,460 |
11,340 |
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Yesterday 05:34 PM
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2,386 |
19,659 |
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 12:36 PM
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10,583 |
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Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
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Yesterday 05:48 AM
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411 |
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Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
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07-01-2009 11:04 AM
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478 |
3,524 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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07-02-2009 12:36 PM
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8,241 |
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Discuss the use of food supplements here!
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Yesterday 09:25 AM
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1,893 |
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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Today 05:17 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 02:13 AM
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448 |
3,971 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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Yesterday 06:49 PM
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7,461 |
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06-25-2009 09:24 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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Yesterday 07:27 AM
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2,536 |
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For patients currently undergoing trial or surgical procedures.
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Yesterday 07:25 AM
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349 |
3,590 |
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Share your success stories here!
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Today 05:03 AM
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257 |
1,846 |
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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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06-29-2009 04:47 PM
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327 |
2,871 |
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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06-30-2009 11:59 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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Yesterday 05:08 AM
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06-28-2009 06:48 AM
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Learn more about treatments currently being studied.
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Yesterday 09:10 AM
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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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06-27-2009 02:10 PM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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Yesterday 01:52 AM
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4,481 |
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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06-15-2009 11:19 AM
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1,105 |
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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 01:10 PM
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5,803 |
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05-28-2009 04:38 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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06-28-2009 08:29 AM
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169 |
2,155 |
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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06-28-2009 09:00 AM
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Yesterday 10:08 AM
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Patients now struggle to afford many medications. Share your stories here.
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07-01-2009 01:08 PM
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137 |
1,019 |
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 04:55 AM
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3,845 |
28,952 |
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Share your favorite IC friendly recipes and menu ideas here!
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Yesterday 06:19 PM
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208 |
1,339 |
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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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Yesterday 10:41 AM
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333 |
2,320 |
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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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06-30-2009 09:36 AM
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38 |
213 |
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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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06-29-2009 07:33 AM
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84 |
688 |
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Discuss your thoughts and concerns about depression and anxiety here.
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Today 04:29 AM
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8,437 |
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07-02-2009 05:11 AM
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408 |
3,297 |
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07-02-2009 06:34 AM
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320 |
2,586 |
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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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Yesterday 10:06 PM
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164 |
1,623 |
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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Today 03:42 AM
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683 |
4,985 |
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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07-02-2009 01:44 PM
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2,095 |
19,457 |
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Are you in a flare? Need support? Post here!
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Yesterday 06:01 PM
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2,376 |
19,625 |
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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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06-28-2009 02:38 PM
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562 |
4,993 |
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What gets you motivated? Share your ideas and your wisdoms with others.
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06-24-2009 12:38 PM
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310 |
1,635 |
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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07-02-2009 04:18 AM
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455 |
3,102 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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06-26-2009 09:21 AM
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46 |
297 |
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Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
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Yesterday 09:25 PM
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6 |
181 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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Today 04:10 AM
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712 |
5,545 |
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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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06-29-2009 05:19 PM
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121 |
786 |
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06-18-2009 03:20 PM
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252 |
2,229 |
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Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
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Yesterday 06:45 PM
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1,437 |
11,313 |
Pregnancy and Motherhood With Interstitial Cystitis
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06-20-2009 07:36 AM
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336 |
2,310 |
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07-02-2009 09:59 AM
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472 |
4,791 |
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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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06-30-2009 07:57 PM
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434 |
3,890 |
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If you are an IC patient struggling with fertility, share your thoughts here!
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06-25-2009 08:39 AM
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48 |
300 |
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05-19-2009 02:26 PM
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13 |
121 |
Men with Interstitial Cystitis & PBS
Yes, men do get interstitial cystitis. Often misdiagnosed with chronic prostatitis, men may struggle for years to receive care. Men, we hope you'll use this support forum! Please do!
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Are you a newly diagnosed man? Meet others here!
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06-24-2009 06:07 PM
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212 |
1,370 |
Single Life and IC
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Here's a place to share your questions, ideas and strategies on dating with IC.
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05-18-2009 11:14 AM
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11 |
94 |
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04-14-2009 11:46 AM
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20 |
24 |
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06-30-2009 09:15 AM
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32 |
380 |
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06-12-2009 10:07 AM
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8 |
74 |
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05-14-2009 06:38 AM
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6 |
67 |
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04-14-2009 01:27 PM
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5 |
37 |
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06-21-2009 10:24 AM
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9 |
131 |
Family & Friends Of Patients With Interstitial Cystitis
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07-02-2009 05:17 PM
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406 |
3,753 |
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Discuss & Compare spouse/partner relations here
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06-28-2009 02:59 PM
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247 |
3,284 |
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06-28-2009 01:55 AM
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181 |
1,662 |
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A special place where family members & friends can ask questions & support each other!
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05-18-2009 10:04 AM
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104 |
547 |
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We need vacation ideas! Share your favorite interstitial cystitis friendly vacation ideas and locations here! We'd also love to hear some great vacation stories too!
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Yesterday 06:21 PM
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221 |
1,689 |
MEET OTHERS BY REGION (USA)
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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There are many interstitial cystitis support groups in the USA & Canada. See our list of current groups below!
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07-02-2009 12:40 PM
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19 |
43 |
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Meet others from Canada Here!
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06-22-2009 10:25 AM
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111 |
792 |
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11-27-2008 10:19 AM
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20 |
186 |
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Meet other IC patients in the North East Area of our country: CT, DC, ME, MD, MA, NH, NJ, NY, PA, RI, VT
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07-02-2009 09:16 AM
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430 |
1,845 |
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Meet others from the Southeastern states of our country: AL, DE, FL, GA, LA, MS, NC, SC, TN, VA, WV,
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Yesterday 10:49 AM
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435 |
2,260 |
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Meet others in the Central (Plains) states of our country: AR, IL, IN, IA, KY, MI, MN, MO, OH, WI
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Yesterday 12:51 AM
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327 |
1,789 |
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Meet others in the Southwestern states of our country: AZ, NV, UT, NM, TX
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06-15-2009 03:03 AM
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202 |
870 |
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06-29-2009 02:49 AM
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128 |
550 |
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Meet others in the Northwestern states of our country: AK, ID, MT, OR, WA
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06-27-2009 04:33 PM
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79 |
453 |
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Meet others in the Midwest/Rocky Mountain states of our country: CO, KS, ND, NE, OK, SD, WY
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06-16-2009 07:13 PM
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75 |
282 |
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06-29-2009 03:59 PM
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191 |
1,985 |
Children with Interstitial Cystitis
Yes, interstitial cystitis has been diagnosed in children under the age of five. These children need help too, especially since there are no specialists available for the care of pediatric IC. Let's join resources and share information here!
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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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05-27-2009 07:36 AM
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64 |
552 |
Teenagers With Interstitial Cystitis
From attending school to dating, athletics to explaining IC to friends (should they or shouldn't they?), teen interstitial cystitis patients have important issues that need to be addressed. Let's help them here!
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Just for high school students with IC
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06-13-2009 07:02 PM
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77 |
637 |
20's CHAT
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Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
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04-15-2009 11:27 AM
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175 |
1,344 |
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06-29-2009 06:36 PM
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239 |
2,057 |
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05-12-2008 05:49 AM
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124 |
1,195 |
30's & 40's
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04-26-2009 02:18 PM
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224 |
2,189 |
50's CHAT
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06-16-2009 06:21 AM
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175 |
1,106 |
SPIRITUALITY & FAITH
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06-29-2009 05:20 AM
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1,199 |
17,838 |
MISC.
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07-01-2009 05:17 PM
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190 |
1,548 |
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05-22-2009 02:19 PM
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128 |
7,022 |
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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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05-22-2009 08:11 AM
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48 |
225 |
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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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05-18-2009 10:05 AM
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110 |
583 |
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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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07-02-2009 10:34 PM
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227 |
2,100 |
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Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
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07-02-2009 05:21 PM
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601 |
4,202 |
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Because IC is only a part of our lives.
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Yesterday 10:26 PM
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1,757 |
17,326 |
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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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07-02-2009 06:36 PM
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106 |
732 |
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A "Spot" for sharing pet "tails"
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07-01-2009 05:38 PM
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460 |
4,613 |
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 01:30 AM
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287 |
2,715 |
BOARD MGT.
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For Questions About BBS Management & TOS Inquiries
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06-18-2009 04:00 PM
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123 |
716 |
EOSINOPHILIC CYSTITIS
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The ICN is proud to host the Eosinophilic Cystitis Resource Center!
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06-14-2009 03:01 PM
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44 |
249 |
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Forum Contains New Posts |
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Forum Contains No New Posts |
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Forum is Closed for Posting |
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All times are GMT -11. The time now is 05:28 AM.
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