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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!
by ABliske
Yesterday 10:37 AM Go to last post
320 2,832
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
80 938
Review recent recalls of products, drugs and related materials
05-08-2008 11:11 AM Go to last post
30 300
Jill's Journal (1 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
149 2,655
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!
3,837 31,633
Share your Interstitial Cystitis Success Story Here
Yesterday 08:29 AM Go to last post
532 5,831
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
by cwood
05-10-2008 04:51 AM Go to last post
1,682 14,855
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
by BrieICN
05-10-2008 09:07 PM Go to last post
164 2,097
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
664 6,000
221 1,182
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!
1,104 9,880
05-11-2008 07:33 PM Go to last post
326 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 (13 Viewing)
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.
Elmiron, a protective bladder coating, is an oral medication that helps rebuild the bladder lining. Discuss it here!
1,050 9,192
Ask questions about diet and interstitial cystitis IC/PBS here!
3,199 24,163
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
Today 09:35 AM Go to last post
386 2,998
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
838 6,711
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 suzziy
Yesterday 05:09 AM Go to last post
314 2,126
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.
490 3,619
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
307 2,840
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
877 6,763
161 985
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!
05-09-2008 09:07 AM Go to last post
248 2,282
For patients currently undergoing trial or surgical procedures.
Today 06:07 PM Go to last post
321 3,331
Share your success stories here!
243 1,726
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
05-09-2008 10:21 AM Go to last post
275 2,507
Nerve Blocks (4 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.
Cyclosporine (2 Viewing)
40 753
Botox (1 Viewing)
Learn more about treatments currently being studied.
by bigred
Today 06:28 AM Go to last post
155 1,435
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 (1 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.
Yesterday 01:48 PM Go to last post
431 5,349
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 (16 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
852 6,966
Other Treatments (6 Viewing)
610 4,317
Drug Costs & Expenses (3 Viewing)
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 missusg
Yesterday 10:30 AM Go to last post
16 97
Depression & Anxiety (9 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
Today 04:14 PM Go to last post
641 7,147
by mayray
05-08-2008 02:57 PM Go to last post
363 2,946
Exercise & Fitness (7 Viewing)
by LIANA55
Yesterday 05:59 AM Go to last post
258 2,137
Stop Smoking! (3 Viewing)
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
152 1,413
Social Security Q&A (2 Viewing)
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
by TerriT
05-10-2008 07:30 PM Go to last post
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.
Discuss pain management strategies here!
by momw/ic
Today 06:26 PM Go to last post
1,743 16,267
Are you in a flare? Need support? Post here!
1,994 16,729
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 JanL
Yesterday 08:32 PM Go to last post
538 4,807
Let's Get Motivated (3 Viewing)
What gets you motivated? Share your ideas and your wisdoms with others.
275 1,452
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
by Tracie
Yesterday 08:51 AM Go to last post
394 2,679
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
by dminton
05-10-2008 03:47 PM Go to last post
3 28
Vulvodynia (8 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
Yesterday 08:56 AM Go to last post
585 4,398
Dry Eyes/Dry Mouth (1 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!
by NancyB
Yesterday 10:14 AM Go to last post
110 721
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!
Today 04:34 PM Go to last post
1,179 9,509
Pregnancy and Motherhood With Interstitial Cystitis
05-07-2008 07:33 AM Go to last post
301 2,048
I'm Pregnant! (1 Viewing)
341 3,636
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 3,617
Infertility (1 Viewing)
If you are an IC patient struggling with fertility, share your thoughts here!
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!
Newly Diagnosed Man? (2 Viewing)
Are you a newly diagnosed man? Meet others here!
by yvette
05-11-2008 05:14 PM Go to last post
185 1,095
Single Life and IC
Here's a place to share your questions, ideas and strategies on dating with IC.
by marsi4
05-10-2008 10:19 AM Go to last post
6 37
02-27-2008 11:27 PM Go to last post
2 4
Yesterday 08:34 PM Go to last post
10 154
12-03-2007 05:21 PM Go to last post
3 30
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
02-18-2008 06:10 AM Go to last post
2 25
Family & Friends Of Patients With Interstitial Cystitis
by stef000
05-10-2008 10:41 PM Go to last post
367 3,428
Discuss & Compare spouse/partner relations here