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What's Going On?
Currently Active Users: 226 (11 members and 215 guests)
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Most users ever online was 1,029, 11-01-2006 at 06:18 AM.
Interstitial Cystitis (ICN) Support Forum Statistics
Interstitial Cystitis (ICN) Support Forum Statistics
Threads: 59,459, Posts: 498,158, Members: 39,632
Welcome to our newest member, idreamelectric

Welcome to the Interstitial Cystitis (ICN) Support Forum.
If this is your first visit, be sure to check out the FAQ by clicking the link above. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below.
  Forum Last Post Threads Posts
ICN Special Projects
We're setting up a team of patients to help coordinate the October 2010 IC Awareness Month. What can we do in your state? Share your ideas and volunteer here!
Sub-Forums: Volunteers, Ideas
by moak771
Yesterday 02:31 AM Go to last post
12 61
We're looking for cool, refreshing IC friendly recipes to help satisfy our thirst during the hot summer months!
Yesterday 12:18 PM Go to last post
34 88
Interstitial Cystitis News & Updates
Read the latest interstitial cystitis news here!
ICN Announcements (2 Viewing)
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!
Yesterday 05:06 PM Go to last post
499 3,739
New announcements from the urology, medical and health care industry.
by Aglentz
07-23-2010 04:56 AM Go to last post
6 48
Read the latest research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction, prostatitis & overactive bladder here!
Yesterday 12:29 PM Go to last post
169 1,691
by Skyler
07-19-2010 07:49 AM Go to last post
7 10
Review recent recalls of products, drugs and related materials
07-24-2010 02:18 AM Go to last post
74 687
Help us raise awareness for IC!
07-28-2010 02:06 AM Go to last post
5 62
Jill's Journal (1 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
07-01-2010 02:23 AM Go to last post
232 3,265
Patient Stories
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
2,344 20,055
Introduce Yourself and share your interstitial cystitis story here!
5,537 44,720
Share your Interstitial Cystitis Success Story Here
by juliaCB
07-28-2010 11:13 AM Go to last post
726 7,931
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
by bubbe1
07-26-2010 02:31 PM Go to last post
225 2,782
Are you a newly diagnosed man? Meet others here!
by GEMINI
07-26-2010 05:45 AM Go to last post
238 1,565
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!
76 690
Just for high school students with IC
07-27-2010 03:43 PM Go to last post
80 667
Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
07-25-2010 04:35 PM Go to last post
191 1,456
Read more IC Patient Stories here! This links to another section of our website
- - -
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!
Yesterday 02:18 PM Go to last post
1,484 12,792
07-24-2010 04:46 AM Go to last post
415 3,117
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
by super
Yesterday 09:20 AM Go to last post
1,685 12,885
Symptoms of IC (16 Viewing)
2,790 22,637
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.
Elmiron, a protective bladder coating, is an oral medication that helps rebuild the bladder lining. Discuss it here!
by bubbe1
Today 01:25 AM Go to last post
1,433 12,047
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
Today 03:12 AM Go to last post
161 1,118
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
07-28-2010 05:01 PM Go to last post
552 4,157
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
07-25-2010 09:19 AM Go to last post
1,200 9,342
Discuss the use of food supplements here!
480 2,845
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.
07-28-2010 12:04 PM Go to last post
859 6,315
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
541 4,712
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
07-23-2010 11:08 AM Go to last post
1,077 8,272
T.E.N.S Therapy (3 Viewing)
Yesterday 02:35 PM Go to last post
192 1,205
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.
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!
07-25-2010 01:25 PM Go to last post
306 2,729
For patients currently undergoing trial or surgical procedures.
Yesterday 05:58 PM Go to last post
367 3,731
Share your success stories here!
07-25-2010 01:00 PM Go to last post
264 1,897
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
350 2,994
Nerve Blocks (1 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
07-10-2010 03:52 AM Go to last post
70 426
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.
Cyclosporine (1 Viewing)
06-13-2010 06:32 PM Go to last post
44 785
04-11-2010 10:43 PM Go to last post
46 664
Botox (1 Viewing)
Learn more about treatments currently being studied.
07-23-2010 09:49 AM Go to last post
208 1,747
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.
04-11-2010 03:16 PM Go to last post
70 1,169
One of the great controversies in IC treatment. Discuss antibiotics here!
07-24-2010 02:46 PM Go to last post
434 4,721
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!
Discuss augmentation, ostomies and related procedures here
by DebbieD
04-20-2010 08:13 AM Go to last post
127 1,146
Bladder Removal (3 Viewing)
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.
07-21-2010 05:03 PM Go to last post
511 6,473
Yesterday 07:04 PM Go to last post
20 222
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
202 2,499
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (7 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
07-25-2010 03:45 AM Go to last post
1,143 8,783
Other Treatments (1 Viewing)
800 5,451
Drug Costs & Expenses (1 Viewing)
Patients now struggle to afford many medications. Share your stories here.
by mary124
07-28-2010 06:29 AM Go to last post
144 1,116
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
4,501 33,503
IC Diet: Recipes (4 Viewing)
Share your favorite IC friendly recipes and menu ideas here!
Yesterday 06:09 AM Go to last post
481 2,821
07-07-2010 05:53 AM Go to last post
5 36
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!
Yesterday 07:06 PM Go to last post
360 2,502
Read columns on the IC diet by Bev Laumann, author of "A Taste of the Good Life: A Cookbook for an IC Diet."
- - -
Find recipes that IC patients have submitted that could add some diversity to your diet
- - -
- - -
Self-Help For Interstitial Cystitis
by Julie B
07-28-2010 04:15 PM Go to last post
63 367
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
by ceebee
07-25-2010 12:37 PM Go to last post
124 959
Depression & Anxiety (1 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
904 9,564
440 3,614
Exercise & Fitness (3 Viewing)
07-22-2010 12:04 PM Go to last post
358 2,821
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
07-23-2010 08:57 AM Go to last post
168 1,700
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
07-28-2010 12:09 PM Go to last post
714 5,300
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.
Discuss pain management strategies here!
Yesterday 03:41 AM Go to last post
2,256 20,551
Are you in a flare? Need support? Post here!
Yesterday 08:09 PM Go to last post
2,728 21,693
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!
07-26-2010 10:12 AM Go to last post
586 5,176
Let's Get Motivated (1 Viewing)
What gets you motivated? Share your ideas and your wisdoms with others.
by Kathi
06-21-2010 12:17 PM Go to last post
327 1,731
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
by GPat
07-28-2010 10:28 AM Go to last post
514 3,481
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
81 467
Discuss fibromyalgia here.
by duana
07-24-2010 03:49 PM Go to last post
32 235
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
07-28-2010 01:57 AM Go to last post
48 543
Vulvodynia (3 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
07-28-2010 05:02 PM Go to last post
810 6,180
Dry Eyes/Dry Mouth (2 Viewing)
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!
129 832
Yesterday 11:42 AM Go to last post
278 2,411
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
07-28-2010 12:04 PM Go to last post
1,594 12,203
Pregnancy and Motherhood With Interstitial Cystitis
07-28-2010 10:25 AM Go to last post
363 2,397
Children's Activities (1 Viewing)
Share your ideas for some child activities that you can do when your IC flaring.
15 43
I'm Pregnant! (1 Viewing)
07-26-2010 01:51 PM Go to last post
533 5,249
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
06-23-2010 02:12 PM Go to last post
449 3,967
If you are an IC patient struggling with fertility, share your thoughts here!
by Sassy1
04-29-2010 05:54 AM Go to last post
53 347
by kadi
Yesterday 05:26 PM Go to last post
17 198
Health Insurance Discussions
Are you struggling with health insurance? Don't have insurance?? Looking for drug assistance programs??
Is this a can of worms or what?? Ask questions or discuss any issues you might have with your health insurance coverage
by kadi
07-19-2010 09:42 AM Go to last post
1 9
Are you in the military and seeking care?
by nottoc4
05-10-2010 11:58 PM Go to last post
1 7
Some medications are available at no cost through pharmaceutical companies. Share your experiences or questions here!
07-21-2010 12:10 PM Go to last post
4 7
05-26-2010 04:14 AM Go to last post
252 1,518
Share your ideas with others on getting health care if you lack coverage. Free clinics?? Pay per visit?? How are you coping?
1 10
Social Life - Family, Friends, Dating
by kadi
Today 02:30 AM Go to last post
144 1,134
07-28-2010 10:30 AM Go to last post
1,221 11,432
GREAT DEBATES
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!
310 3,022
One of the long standing debates is the validity of the KCL test to diagnose IC rather than the more intensive hydrodistention. What do you think?
2 26
MEET OTHERS BY REGION
This section of the ICN Forum is dedicated to Michaeleen Franklin, the longest running IC support group leader in the USA. We honor her memory, her compassion, her wisdom and her support of patients in the Southwestern USA for more than twenty years.
US States (8 Viewing)
Find patients in your neck of the woods!
by Tura
Yesterday 01:39 PM Go to last post
1,812 8,643
Click here to view our database of support groups and medical care providers.
- - -
Meet others from Canada Here!
by pooby
Yesterday 09:59 AM Go to last post
140 978
10-21-2009 01:43 AM Go to last post
19 186
Australia (1 Viewing)
02-05-2010 11:21 AM Go to last post
197 2,013
SPIRITUALITY, FAITH & POSITIVITY
Prayer Requests (4 Viewing)
07-23-2010 09:02 AM Go to last post
1,289 18,933
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
by Kathi
06-21-2010 12:15 PM Go to last post
754 6,656
The Happiness Corner (2 Viewing)
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!
Yesterday 11:46 PM Go to last post
99 970
MISC.
Career Concerns & IC (2 Viewing)
07-09-2010 03:51 AM Go to last post
205 1,678
07-13-2010 12:27 PM Go to last post
137 7,073
Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
07-17-2010 10:20 AM Go to last post
67 272
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!
by Kathi
06-21-2010 12:14 PM Go to last post
127 600
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
07-23-2010 05:16 PM Go to last post
256 2,236
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
by Julie B
07-28-2010 04:10 PM Go to last post
641 4,367
Because IC is only a part of our lives.
Yesterday 06:07 PM Go to last post
1,868 18,376
Books & Magazines (1 Viewing)
A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
by mary124
07-12-2010 03:04 AM Go to last post
110 744
Pets Welcome (1 Viewing)
A "Spot" for sharing pet "tails"
by GPat
07-28-2010 10:35 AM Go to last post
487 4,865
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
06-17-2010 04:41 AM Go to last post
143 790
EOSINOPHILIC CYSTITIS
The ICN is proud to host the Eosinophilic Cystitis Resource Center!
by vjhjcjc
06-19-2010 08:01 AM Go to last post
45 263


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