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ICN - Interstitial cystitis information & support
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| What's Going On? |
Currently Active Users: 175 (14 members and 161 guests)
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Most users ever online was 1,029, 11-01-2006 at 07:18 AM.
bigred, blondie_1147, Cillajane, GnevNaZhenu, Goldfinch, icgennifer, InpainwithIC, Kamazy, KarenAnne, Krisandra83, Madi's Granny, myriam21209, SELS71
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ICN - Interstitial cystitis information & support Statistics
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Threads: 48,793, Posts: 419,879, Members: 33,498
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Today's Birthdays
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2minds, Katrina Klein, gracielou (53), Rosalinda (51), dgrand (45), MEL W. (42), gloriabono (41), gloriabono68 (41), smcleary (41), danacook2 (40), sunnybowl2002 (40), ChristineM (39), Kelli (32), ICnIL (32), Ren.Thomp (30), Princess of I.C (30), Mandi_Dawn (26), SPOWALIE (26) |
| 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 12:42 PM
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3,099 |
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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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Yesterday 11:15 AM
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1,125 |
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Review recent recalls of products, drugs and related materials
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12-18-2008 09:38 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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12-29-2008 06:08 AM
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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 06:59 AM
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4,401 |
36,248 |
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Share your Interstitial Cystitis Success Story Here
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Yesterday 01:51 PM
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6,683 |
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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 02:52 AM
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16,050 |
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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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12-16-2008 06:26 PM
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2,273 |
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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 02:24 PM
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6,301 |
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12-26-2008 03:43 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 06:16 AM
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1,237 |
10,901 |
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12-27-2008 05:32 PM
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359 |
2,716 |
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Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
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01-04-2009 05:57 AM
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1,324 |
10,324 |
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Today 08:25 AM
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2,223 |
18,273 |
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 02:03 AM
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1,174 |
10,015 |
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Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
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01-04-2009 02:07 AM
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448 |
3,362 |
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Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
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Today 05:16 AM
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7,659 |
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Discuss the use of food supplements here!
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Yesterday 01:24 PM
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1,603 |
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 05:12 AM
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4,450 |
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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 06:14 AM
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378 |
3,426 |
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Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
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12-31-2008 09:59 AM
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7,060 |
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12-01-2008 07:12 AM
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173 |
1,051 |
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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12-31-2008 06:24 PM
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2,430 |
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For patients currently undergoing trial or surgical procedures.
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01-03-2009 01:54 PM
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3,464 |
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Share your success stories here!
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01-02-2009 04:19 AM
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253 |
1,801 |
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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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12-24-2008 12:24 PM
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300 |
2,708 |
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Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
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01-03-2009 01:57 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 03:20 PM
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Yesterday 09:06 AM
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Learn more about treatments currently being studied.
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12-30-2008 07:26 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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12-11-2008 05:55 AM
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One of the great controversies in IC treatment. Discuss antibiotics here!
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Yesterday 08:57 AM
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4,343 |
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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09-15-2008 03:00 PM
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1,085 |
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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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Today 01:29 AM
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5,563 |
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09-10-2008 10:36 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 05:59 AM
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1,932 |
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 02:38 AM
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966 |
7,671 |
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Yesterday 12:13 PM
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696 |
4,858 |
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Patients now struggle to afford many medications. Share your stories here.
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Today 08:31 AM
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134 |
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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 09:22 AM
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3,533 |
26,732 |
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Share your favorite IC friendly recipes and menu ideas here!
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01-04-2009 08:15 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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12-04-2008 09:52 AM
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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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01-03-2009 02:11 PM
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127 |
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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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12-30-2008 07:56 PM
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60 |
568 |
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Discuss your thoughts and concerns about depression and anxiety here.
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Yesterday 08:36 AM
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724 |
7,897 |
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Yesterday 12:51 PM
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395 |
3,151 |
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01-03-2009 06:33 PM
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302 |
2,426 |
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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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12-31-2008 11:58 AM
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161 |
1,552 |
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Are you considering applying disability insurance? In the Appeals process? Post your questions here.
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01-03-2009 08:58 AM
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658 |
4,777 |
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 AM
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1,968 |
18,331 |
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Are you in a flare? Need support? Post here!
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Today 09:27 AM
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2,204 |
18,392 |
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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 03:08 AM
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554 |
4,921 |
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What gets you motivated? Share your ideas and your wisdoms with others.
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Yesterday 01:40 PM
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294 |
1,568 |
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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01-02-2009 02:33 PM
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428 |
2,948 |
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Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
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Today 05:02 AM
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24 |
144 |
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Female IC patients often have vulvodynia problems. Discuss this here!
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01-04-2009 05:00 PM
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658 |
5,092 |
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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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11-13-2008 11:18 AM
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118 |
755 |
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Today 08:50 AM
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238 |
2,123 |
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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 06:02 AM
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1,336 |
10,637 |
Pregnancy and Motherhood With Interstitial Cystitis
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12-19-2008 12:13 PM
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332 |
2,262 |
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01-03-2009 04:13 PM
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428 |
4,455 |
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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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Today 07:39 AM
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