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ICN - Interstitial cystitis information & support
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| What's Going On? |
Currently Active Users: 220 (24 members and 196 guests)
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Most users ever online was 1,029, 11-01-2006 at 10:18 AM.
amaranthe, amyg, AnaFreePorn, Angeles, aprilchen, bf17, bluetou, Briza, CindyLu, Drierbanecice, IC SARAH-CPP, kari1980, kat820, KuRoregioNka, littleQ, lmq78, pyrodruidess, RobinD, Sheila6830, sleekgirla, tango, Taramc, vickyvale, willow2389
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ICN - Interstitial cystitis information & support Statistics
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Threads: 46,117, Posts: 399,320, Members: 28,253
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Today's Birthdays
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DainaG, wci30, lisacar, wholebon (60), Eleanor (58), Becki (58), Smoke (52), Daina (50), Penobscot girl (49), missychan (45), TheresaK (45), jdogma (41), Acerda (40), Wegs93 (37), susanwelby (36), ace88 (36), labradorgirl (34), MeganAnne (27), green99 (24) |
| 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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08-25-2008 01:51 PM
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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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08-23-2008 07:40 AM
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Review recent recalls of products, drugs and related materials
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Today 09:03 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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08-25-2008 04:38 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 02:25 PM
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33,726 |
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Share your Interstitial Cystitis Success Story Here
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08-21-2008 03:21 PM
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6,174 |
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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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Yesterday 11:20 PM
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1,759 |
15,494 |
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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 11:21 AM
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2,149 |
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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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08-20-2008 09:49 PM
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6,200 |
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Yesterday 01:22 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 12:54 PM
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1,174 |
10,364 |
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Today 10:24 AM
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2,662 |
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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Today 03:47 PM
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9,859 |
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Today 03:50 PM
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17,487 |
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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08-25-2008 06:38 PM
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9,547 |
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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 03:30 PM
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409 |
3,147 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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Today 03:44 PM
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7,220 |
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Discuss the use of food supplements here!
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Today 03:42 PM
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196 |
1,418 |
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 11:42 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 03:55 PM
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3,106 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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08-25-2008 07:08 AM
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6,928 |
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08-19-2008 03:21 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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08-25-2008 08:48 PM
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2,363 |
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For patients currently undergoing trial or surgical procedures.
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08-08-2008 08:14 AM
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326 |
3,395 |
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Share your success stories here!
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08-09-2008 07:59 PM
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249 |
1,768 |
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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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08-10-2008 07:38 PM
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293 |
2,663 |
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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08-15-2008 12:45 PM
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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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08-10-2008 06:20 PM
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Yesterday 08:29 PM
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Learn more about treatments currently being studied.
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Today 01:28 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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Today 01:09 PM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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08-22-2008 06:03 AM
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4,299 |
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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06-24-2008 04:28 AM
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1,072 |
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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 09:05 PM
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5,437 |
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06-15-2008 10:59 AM
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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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Today 12:04 PM
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131 |
1,730 |
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 06:11 AM
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7,372 |
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Today 08:51 AM
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651 |
4,612 |
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Patients now struggle to afford many medications. Share your stories here.
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07-09-2008 09:37 PM
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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 03:54 PM
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3,343 |
25,309 |
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Share your favorite IC friendly recipes and menu ideas here!
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Today 01:25 PM
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387 |
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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 08:31 PM
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2,203 |
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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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Yesterday 06:23 PM
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40 |
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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 04:26 PM
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42 |
316 |
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Discuss your thoughts and concerns about depression and anxiety here.
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Yesterday 04:21 PM
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679 |
7,497 |
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Today 03:45 PM
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376 |
3,036 |
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Today 09:22 AM
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282 |
2,319 |
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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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08-25-2008 09:43 AM
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157 |
1,483 |
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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08-22-2008 11:50 PM
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635 |
4,625 |
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 12:47 PM
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1,880 |
17,540 |
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Are you in a flare? Need support? Post here!
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Today 08:23 AM
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2,099 |
17,578 |
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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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Today 09:22 AM
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545 |
4,841 |
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What gets you motivated? Share your ideas and your wisdoms with others.
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08-14-2008 10:23 AM
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283 |
1,523 |
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 04:37 PM
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417 |
2,842 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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08-20-2008 07:41 AM
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54 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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Today 03:17 PM
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616 |
4,649 |
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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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08-25-2008 09:43 PM
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116 |
751 |
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Yesterday 04:05 PM
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226 |
2,017 |
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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 04:34 PM
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1,268 |
10,147 |
Pregnancy and Motherhood With Interstitial Cystitis
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Today 01:43 PM
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322 |
2,185 |
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Today 09:35 AM
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375 |
3,966 |
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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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08-25-2008 01:42 PM
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411 |
3,711 |
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If you are an IC patient struggling with fertility, share your thoughts here!
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Yesterday 08:27 AM
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43 |
278 |
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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Today 02:54 PM
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193 |
1,159 |
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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Today 01:55 PM
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71 |
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08-04-2008 02:38 PM
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6 |
8 |
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08-20-2008 07:42 PM
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12-03-2007 05:21 PM
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