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ICN - Interstitial cystitis information & support Statistics
ICN - Interstitial cystitis information & support Statistics
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Welcome to the ICN - Interstitial cystitis information & support.
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
Interstitial Cystitis News & Updates
Read the latest interstitial cystitis news here!
ICN Announcements (5 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!
319 2,823
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
05-05-2008 02:06 PM Go to last post
79 931
Review recent recalls of products, drugs and related materials
Yesterday 11:11 AM Go to last post
30 300
Jill's Journal (5 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
149 2,654
Read the ICN's Blog of the latest IC News!! This links to a seperate website for the blog!
- - -
Share Your Interstitial Cystitis Story
Introduce Yourself and share your interstitial cystitis story here!
3,828 31,561
Share your Interstitial Cystitis Success Story Here
by kathdog
Today 12:24 PM Go to last post
530 5,813
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
by stef000
Yesterday 11:44 PM Go to last post
1,682 14,854
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
Yesterday 08:44 AM Go to last post
164 2,094
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
Yesterday 05:56 AM Go to last post
663 5,989
220 1,175
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!
by mary124
Yesterday 10:42 AM Go to last post
1,102 9,873
Today 05:18 AM Go to last post
327 2,496
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
05-07-2008 06:43 AM Go to last post
1,161 9,157
Symptoms of IC (7 Viewing)
by maryla
Today 10:55 AM Go to last post
1,968 16,296
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!
Yesterday 06:53 PM Go to last post
1,049 9,180
Ask questions about diet and interstitial cystitis IC/PBS here!
by missusg
Today 11:56 AM Go to last post
3,197 24,146
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
Yesterday 05:09 PM Go to last post
386 2,990
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
Today 10:23 AM Go to last post
832 6,678
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!
by prbetty
Today 10:17 AM Go to last post
314 2,125
Algonot & Cystoprotek (2 Viewing)
The Algonot line of over the counter supplements include Algonot Plus 3, Cystoprotek & Prostaprotek.
by Katrina
05-07-2008 10:24 AM Go to last post
175 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.
by JenAZ07
Yesterday 03:45 PM Go to last post
489 3,615
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
by jen74
Today 09:08 AM Go to last post
304 2,827
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
Yesterday 06:50 PM Go to last post
874 6,750
T.E.N.S Therapy (2 Viewing)
04-10-2008 07:14 PM Go to last post
159 978
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!
Today 09:07 AM Go to last post
248 2,282
For patients currently undergoing trial or surgical procedures.
by work it
05-05-2008 05:56 PM Go to last post
320 3,320
Share your success stories here!
by maryla
04-28-2008 06:45 PM Go to last post
242 1,720
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
275 2,507
Nerve Blocks (2 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
33 224
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.
05-05-2008 06:43 PM Go to last post
39 751
Botox (3 Viewing)
Learn more about treatments currently being studied.
by jen74
05-07-2008 08:26 AM Go to last post
154 1,430
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.
by harleyk
03-27-2008 08:03 AM Go to last post
66 1,071
One of the great controversies in IC treatment. Discuss antibiotics here!
by MarthaF
05-07-2008 05:18 PM Go to last post
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!
Discuss augmentation, ostomies and related procedures here
by SharonA
02-25-2008 09:06 AM Go to last post
117 1,063
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.
04-27-2008 03:56 PM Go to last post
430 5,341
Nerve Ablation (1 Viewing)
05-07-2008 09:32 PM Go to last post
13 194
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
by MakinIT
04-30-2008 05:46 PM Go to last post
117 1,512
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.
by kathdog
Today 12:39 PM Go to last post
850 6,943
Other Treatments (4 Viewing)
by stef000
Yesterday 06:38 PM Go to last post
608 4,313
Patients now struggle to afford many medications. Share your stories here.
by hdb1982
05-07-2008 09:58 AM Go to last post
128 920
Self-Help For Interstitial Cystitis
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
by hdb1982
04-24-2008 10:42 AM Go to last post
14 88
Depression & Anxiety (7 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
640 7,120
by mayray
Yesterday 02:57 PM Go to last post
363 2,946
Exercise & Fitness (9 Viewing)
by Quinn24
Today 09:39 AM Go to last post
258 2,136
Stop Smoking! (1 Viewing)
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
Yesterday 11:27 AM Go to last post
152 1,402
Social Security Q&A (3 Viewing)
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
616 4,512
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!
Today 12:54 PM Go to last post
1,740 16,245
Are you in a flare? Need support? Post here!
by Briza
Yesterday 06:42 PM Go to last post
1,992 16,716
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!
by pratt
05-07-2008 05:09 PM Go to last post
541 4,810
What gets you motivated? Share your ideas and your wisdoms with others.
by Kathi
05-05-2008 04:04 PM Go to last post
275 1,448
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
394 2,675
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
by Kara29
05-06-2008 09:34 AM Go to last post
3 26
Vulvodynia (4 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
05-07-2008 09:20 AM Go to last post
584 4,393
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!
04-29-2008 07:30 AM Go to last post
108 715
by dminton
04-30-2008 03:39 PM Go to last post
218 1,961
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
Yesterday 05:54 AM Go to last post
1,173 9,485
Pregnancy and Motherhood With Interstitial Cystitis
05-07-2008 07:33 AM Go to last post
301 2,049
I'm Pregnant! (5 Viewing)
05-07-2008 08:40 AM Go to last post
340 3,632
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
05-06-2008 01:49 PM Go to last post
402 3,622
If you are an IC patient struggling with fertility, share your thoughts here!
by hdb1982
05-06-2008 09:47 PM Go to last post
42 265
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!
Are you a newly diagnosed man? Meet others here!
Yesterday 07:43 PM Go to last post
185 1,085
Single Life and IC
Here's a place to share your questions, ideas and strategies on dating with IC.
04-18-2008 02:38 PM Go to last post
6 36
02-27-2008 11:27 PM Go to last post
2 4
Twenty Somethings (3 Viewing)
04-16-2008 08:05 AM Go to last post
10 150
12-03-2007 05:21 PM Go to last post
3 30
Forties Are Fabulous (1 Viewing)
by yarnia
01-20-2008 11:47 AM Go to last post
3 41
02-04-2008 02:07 PM Go to last post
1 8
Savvy Sixties & Above (1 Viewing)
02-18-2008 06:10 AM Go to last post
2 25
Family & Friends Of Patients With Interstitial Cystitis
367 3,426
Discuss & Compare spouse/partner relations here
04-30-2008 10:26 AM Go to last post
207 2,773
by LuvMaui
04-27-2008 11:12 PM Go to last post