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NEW! Winter 2008 Now Available By Mail or Email
DID YOU KNOW that for every patient on our site having a rough day, there are thousands having great days. Please keep that in perspective as you read our boards. Please post hopeful, encouraging messages whenever possible and always carry hope in your heart. YOU CAN DO THIS! WE BELIEVE IN YOU! - Jill O.
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NOW AVAILABLE!


The IC Survival Guide by Robert Moldwin MD

A Taste of the Good Life: Cookbook for an IC Diet

Prelief

Cystoprotek
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ICN - Interstitial cystitis information & support
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| What's Going On? |
Currently Active Users: 438 (17 members and 421 guests)
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Most users ever online was 1,029, 11-01-2006 at 10:18 AM.
alleytally, Briza, BuffyFan, bunnykinb, Dolphjoy, jpwilkinson, kjeanne, leelee88, momw/ic, motherof4, mya, NancyB, nudge_nudge, saracitykitty, sugar, tango, Tracey83
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ICN - Interstitial cystitis information & support Statistics
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Threads: 43,523, Posts: 377,691, Members: 24,768
Welcome to our newest member, kjeanne
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Today's Birthdays
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sufi, trilb, kleev13, cascade, tahoegal (68), BLR (62), siberian (58), Carl Marshall (56), jeanmary (55), Brenda M (54), nlc57 (51), Thoney (47), Sanchorrow (45), SydsMom (44), pclois (43), kimaurk (42), NadiasWish (35), mkarlo (34), missyk (34), badcystitis (33), Jimmy Royce (31), heatherdenise (31), ambermac13 (30), Iamamy (29), HazelEyesGirl (28), broadway fan (25) |
| Welcome to the ICN - Interstitial cystitis information & support. |
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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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Yesterday 10:37 AM
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2,832 |
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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 03:07 PM
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Review recent recalls of products, drugs and related materials
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05-08-2008 11:11 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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Yesterday 12:23 PM
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Read the ICN's Blog of the latest IC News!! This links to a seperate website for the blog!
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Share Your Interstitial Cystitis Story
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Introduce Yourself and share your interstitial cystitis story here!
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Today 06:10 PM
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3,837 |
31,633 |
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Share your Interstitial Cystitis Success Story Here
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Yesterday 08:29 AM
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532 |
5,831 |
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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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05-10-2008 04:51 AM
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1,682 |
14,855 |
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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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05-10-2008 09:07 PM
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2,097 |
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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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Today 05:56 PM
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Yesterday 08:10 PM
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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 07:21 AM
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1,104 |
9,880 |
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05-11-2008 07:33 PM
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326 |
2,496 |
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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05-07-2008 06:43 AM
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1,161 |
9,157 |
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Today 02:54 PM
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1,971 |
16,320 |
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 07:45 AM
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1,050 |
9,192 |
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Ask questions about diet and interstitial cystitis IC/PBS here!
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Today 05:14 PM
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3,199 |
24,163 |
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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 09:35 AM
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386 |
2,998 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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Today 05:40 PM
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6,711 |
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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 05:09 AM
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2,126 |
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The Algonot line of over the counter supplements include Algonot Plus 3, Cystoprotek & Prostaprotek.
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05-07-2008 10:24 AM
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1,298 |
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 07:41 PM
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3,619 |
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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 05:18 PM
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307 |
2,840 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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Today 09:42 AM
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877 |
6,763 |
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Today 05:54 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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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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05-09-2008 09:07 AM
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248 |
2,282 |
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For patients currently undergoing trial or surgical procedures.
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Today 06:07 PM
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321 |
3,331 |
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Share your success stories here!
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Today 05:44 PM
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243 |
1,726 |
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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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05-09-2008 10:21 AM
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275 |
2,507 |
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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05-09-2008 06:07 AM
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224 |
Experimental Treatments For Interstitial Cystitis
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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Today 01:47 PM
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Learn more about treatments currently being studied.
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Today 06:28 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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03-27-2008 08:03 AM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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05-07-2008 05:18 PM
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351 |
3,977 |
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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02-25-2008 09:06 AM
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117 |
1,063 |
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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 01:48 PM
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5,349 |
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05-07-2008 09:32 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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04-30-2008 05:46 PM
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1,512 |
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 05:52 PM
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6,966 |
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Today 04:00 PM
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4,317 |
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Patients now struggle to afford many medications. Share your stories here.
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05-07-2008 09:58 AM
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Self-Help For Interstitial Cystitis
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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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Yesterday 10:30 AM
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16 |
97 |
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Discuss your thoughts and concerns about depression and anxiety here.
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Today 04:14 PM
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641 |
7,147 |
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05-08-2008 02:57 PM
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363 |
2,946 |
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Yesterday 05:59 AM
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258 |
2,137 |
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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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Today 04:11 PM
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152 |
1,413 |
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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05-10-2008 07:30 PM
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617 |
4,513 |
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 06:26 PM
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1,743 |
16,267 |
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Are you in a flare? Need support? Post here!
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Today 06:13 PM
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1,994 |
16,729 |
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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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Yesterday 08:32 PM
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538 |
4,807 |
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What gets you motivated? Share your ideas and your wisdoms with others.
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Today 07:17 AM
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275 |
1,452 |
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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Yesterday 08:51 AM
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394 |
2,679 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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05-10-2008 03:47 PM
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3 |
28 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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Yesterday 08:56 AM
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585 |
4,398 |
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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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Yesterday 10:14 AM
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110 |
721 |
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04-30-2008 03:39 PM
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218 |
1,961 |
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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 04:34 PM
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1,179 |
9,509 |
Pregnancy and Motherhood With Interstitial Cystitis
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05-07-2008 07:33 AM
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301 |
2,048 |
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Today 10:49 AM
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341 |
3,636 |
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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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05-06-2008 01:49 PM
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402 |
3,617 |
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If you are an IC patient struggling with fertility, share your thoughts here!
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Yesterday 10:32 PM
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42 |
267 |
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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05-11-2008 05:14 PM
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185 |
1,095 |
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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05-10-2008 10:19 AM
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37 |
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02-27-2008 11:27 PM
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Yesterday 08:34 PM
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12-03-2007 05:21 PM
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01-20-2008 11:47 AM
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3 |
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02-04-2008 02:07 PM
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02-18-2008 06:10 AM
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Family & Friends Of Patients With Interstitial Cystitis
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05-10-2008 10:41 PM
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367 |
3,428 |
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Discuss & Compare spouse/partner relations here
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Today 04:49 PM
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